God Hath Not Promised
God hath not promised skies always blue,
Flower strewn pathways all our lives through;
God hath not promised sun without rain,
Joy without sorrow, peace without pain.
But God hath promised strength for the day,
Rest for the labor, light for the way,
Grace for the trials, help from above,
Unfailing sympathy, undying love.
Annie J. Flint
2-1-09
After months of doctor visits to our local family practitioner ( since November to be exact ) with NO success what so ever - ( how many times can you have your blood work done???! ) I was finally able to "drag" Mike into the emergency section of a local hospital. He felt ridiculous I am sure - telling of his symptoms...Severe headaches, being the major culprit, with sensitivity to the sun later on. They did some tests and found out he had swelling ( or inflammation - I forget how they worded it...) around the brain. Prednisone and Vitican were prescribed, a weeks worth. An appointment with a physician in the same hospital was made for the following week. Mike felt GREAT for the whole week, but as soon as the prescriptions ran out, he started backsliding. ( They cut him off cold turkey from the prednisone - isn't that dangerous?) The new doctor he saw did not explain any thing to Mike's understanding, and worse yet, did not give him any pain meds or prescriptions. A week later, after lots of restless night's sleep for us both, I had to call 911. My husband had been delirious every time I had tried to awake him that Sat.night - Sund. morning. By four - five-ish a.m. my husband did not know me, himself, what he was doing and could not speak a thing but gibberish. He was not verbalizing in a normal voice, he was shouting, as well as stumbling, and more scary behavior that I will keep to my self. Mike was taken to the same hospital that had diagnosed his brain swelling ( inflammation? ) about two weeks earlier. They were clueless and had him transferred to Aurora BayCare Medical Center in GreenBay. ( Thank you God for AURORA. ) Within 24 hours he was diagnosed with fungal meningitis. ( CRYPTOCOCCAL MENINGITIS ) My husband almost died. I spent the whole week in the hospital, next to Mikes side...he had intravenous tubes and a breathing tube and was "asleep" over three days. A few times his eyes would move around, though not open. I had his hand and asked him to squeeze if he loved me. He did! One of the doctors later said that it was probably just nerves, but I knew better.The next day, after briefing the nurse of my husbands character - she asked him to give her "the finger." ( Remember he was not awake yet - still three day's with eye's shut. ) He slowly raised his hand with index finger up!! I was never so happy to see that repulsive gesture!! A day or two later, his eyes were starting to open for brief moments. I asked him to blink if he loved me, he did, I got him to blink two more times. About the third day there, he started to come awake, off and on. I knew he was feeling better when he escavated the breathing tube, while still restrained. A few hours later he bolted upright and some of the iv's were yanked out. He was making the night crew hustle and work for their money. Mike is now awake, his restraints are off, he had his second meal this morning - which I was so happy to feed him. He also started therapy yesterday with walks and basic hygiene. ( Relearning how to wash him self, comb his hair, etc. ) I came home today, after spending over four days and five nights in the hospital by his side. It was so hard for me leave him, he is still confused because the disease is still in his body. He is making excellent progress though...which I am so very thankful to God for. I am also so very thankful for all of my friends who have been there for us and gone above and beyond...
2 - 8-09
I will try to make this a short update...Mike is home!! The doctors said they never saw some one, make such a fast recovery, from such a deadly infection. I am calling Mike "my miracle". After eight days at Aurora, I was able to bring him home last night. He still has the fungus in his spinal cord and brain. But home health care will be coming in every day to administer the antifungal meds. via the port in his arm. Eventually he will be able to take the meds. orally. It sounds like he will be taking these for a couple of months. He is on a host of other meds as well, but he is home and it is simply amazing. He has a way to go before his strength is back and he is back to his old self, understandably, and he will have his good days and his bad. But one day at a time! Thanks so much for all of your prayers every one, they meant more then you will ever know.
2-14-09
Woodlands Home Health Care was here this morning. I had a day off from work...Mike had a severe reaction to the amphoterisan , his temp. spiked to over 104 and his blood pressure sky rocketed. He was shaking uncontrollably, it is amazing he didn't bounce off of the recliner - seriously. 911 was called. He was taken to Oconto Falls Hospital, where he spent the whole day. I am very discusted with this hospital. They gave him another dose of the amphoterisan, even after knowing that he had - had a terrible reaction to it earlier. When I was there at seven p.m. to pick him up, they expected me to help him walk out. He could barely stand! Three "nurses" couldn't help him to walk - finally one young gal ran to get a wheel chair. Koodo's to her - but excuse me - isn't this standard procedure for a hospital discharge - much less an ER discharge ??? They got him in our car and I left. I kept looking at Mike as I was driving, he was hallucinating...looked like he was trying to smoke a cigarette...I wanted him to rest, so didn't try to talk to him for the first half of the way home. When I did start to ask him questions, he took a while to respond, when he did try to respond, he was not making sense - gibberish. I called back Oconto Falls Hospital to tell them, they put me on hold, when they got back on - I was told to NOT BRING HIM BACK. They told me to call Aurora or to call the disease specialist. I was beside myself - how in the h - - - was I going to get my husband out of the vehicle when I got home??? Thanks to my mom, my stepdaughter was waiting for me as soon as I pulled in. I pulled as close to the door as I could. Mike didn't seem know who we were ...He was combative and we both had to just force him out of the car. He was still fighting us - Kellie grabbed him from behind, underneath his arm pits and dragged him to the house. We made him as comfortable as we could, on the floor. Blankets, pillow's, ect. And 911 was called again - for the second time this day. I insisted that this time he be taken back down to Aurora.
2-17-09
I have been on the phone more in the last few weeks, then I have been in the last half year I bet. As of today, Mike will be going to a care facility for a short term stay. I was hoping to bring him home, with in home health care and therapy visits. As fast as I blink an eye, things change. The new plan is - is that my husband will be admitted to a local care facility, by Thursday. For short term care...
10:15 a.m.
I just got off the phone with Dr. Loomas, this man is AWESOME. Every time I talk with him, he makes me feel so much better, so more hope-full.I have never met this man, yet - the first time I called him - he gave me so much hope. Not only did he give me his HOME number, but also his WIFE'S cell number - so that I could get ahold of him - while he was on a twelve day vacation with his family! Dr. Loomas continually assures me that me my husband will get better one day ( but it will be a long haul... ) This man whom I have never met, has made this living nightmare - just a bit more bearable.
2-18-09
I spent the better part of the day, with my husband, at Aurora. He slept most of the time I was there, but that is ok, it is a good thing. I took tons of paper work along, to work on while I was there. I feel I made some headway. The guardianship that I need in order to get Mike into a rehab facility is under way. Tomorrow I will be down to Aurora again.
2-19-09
I didn't need to go to Aurora. My mom and I were on our way, when I got a call saying that Mike was going to be transported toWoodland Village Nursing Home today. He was transported by ambulance instead of the traditional medical transport. Only because they were concerned that with the hour drive, his impulsiveness to get up - would cause them trouble in route.
Ton's of paper work, not surprising though. And not finished yet by a long shot.
After my husband was settled in, I left for home. Thank goodness which is now - only a thirteen mile drive. Once home I grabbed pictures and anything I could think of, that would comfort him - at his temporary home away from home.
2-20-09
This morning one of my very good friends, her name is Lori also, came over to help me mend our horse fence. She brought every thing I needed. Then it was off to work. After work I came back home to do the p.m. chores. Then I headed to see my husband. He had a long day with visiters and so was very tired and cranky...I was able to be there when our doctor stopped in. He has a plan to try and get Mike back to eating. I was successful in getting him to eat a few pieces of apple for me...
2-21-09
I received an early phone call from Woodlands, they were not happy with my husbands condition and asked my permission to have him sent back to Aurora. I told them yes, of course. A couple of hours later I received a call from Aurora. The doctor who had been treating Mike said they could not help him any more. I could let him come back to the Nursing Home and hope he would start eating, or let him come home with the same hopes - or have him transferred to St. Luke's in Milwaukee. There they would be able to better aggressively treat this meningitis. Through his spinal cord. Of course I agreed, then I lost it. I was at work when I got this call, every one at my job has been so wonderful, willing to help me with anything and everything. I have such a wonderful support group of friends... One wonderful elder named Ella finally convinced me to leave work to go and be with Mike. She told me they all loved me. I broke down agian, but it does not take much anymore. I got home and called Aurora, good thing I did, Aurora is an hour away and we had bad roads today because of snow. Mike would be leaving for Milwaukee via ambulance in fifteen minutes. I will not see him after all. Now that I am home though, I am just going to stay here and work on the loads of paper work I need for medicaid...That appointment is this coming Tuesday. I am mentally exausted ...
2-22-09
I spoke to my husband a few times today. He always sounds better in the mornings. I asked him if he knew where he was. He said something I couldn't make out and then I told him "your in a hospital in Milwaukee." He then said "this is getting rediculous."
8:51 a.m.
Mike's new infectious disease doctor called me. He said Mike is better this morning then he was yesterday when he arrived. He is not going to pursue the spinal infusion of medicine, he said that has it's own host of side affects and he had never used that patecular treatment in over thirty years. He is going to try amphoterisan agian, but a different type, or dosage. He also told me that after hearing of Mike's results after his second spinal tap - that he was not happy that the disease had not detereorated at all. He said after a week of treatment with this latest plan, they will do another spinal tap. ( Apparently they should not be done more often then every couple of weeks. ) They should know more at that point. So Mike will be there for at least week. I hope they keep him longer...for his sake and ours.
6:49 a.m.
I got off the phone with Mike's nurse. She said they had gotten him to take a few bites of food today, but that then, he had thrown up. A whole green bean was in the mixture. They now believe that his brain is not getting the message through - to chew. So he has now been put on a pureed diet. This is a hard one for me to deal with...he is trying to eat which is a major improvement...but he cant seem to figure out that he has to chew...My husband never in a million years would have wanted to be like this. I feel so damned helpless. I have been going to bed at night with his clothes, to hug. So I can at least feel closer...
2-23-09
Dr. Loomas called me this morning at around 6.am. He apologized for calling so early from California, but said that they had a long night and his wife had just been checking their messages...He said he has known Dr. ----- for years and assured me he is an exelent desease specialist. Once again I am hopefull that every thing will be ok
2-24-09
St. Lukes called me and said that our insurance wont cover Mike. Why don't they find these things out first, before admitting a person...They asked my permission to transfer him to a different hospital in Milwaukee - Aurora Sinai Medical Center. Of course I agreed. He arrived there in the evening.
2-25-09
My brother in law took a few of us down to Milwaukee today, to see Mike and so that I could talk with his new doctor. ( Thanks so much Steve~ ) My in law's and my two step children also came. Mike looked so much better, then when he had been in the care facility. ( While there, he couldn't get up on his own, much less walk and could barely get the silver ware to his mouth. I really think Aurora jumped the gun, in sending him there. ) Mike was put back on a milder form of amphoterisan. Today he had already been taken on a good walk by therapy, and I saw him eat with much better ease. His new doctor told me his plan and barring any complications - Mike will be there for at least ten day's. He seems to be responding well to this new treatment ( that was started at St. Lukes. ) Family joked with him and got him to smile and laugh a bit. And he is getting cranky and demanding with me again - a good sign. ( He was asking me to get him cigarettes and was not happy when I didn't. ) Keep up the good work honey~
2-26-09
Mike sounded great when I talked to him today, other family members thought so as well~
2-27-09
Mike didn't sound so good when I called him this morning, very confused again and weak sounding...Mt. Sinai called me later in the morning. ( I was at work, have my cell phone with me 24-7 now. ) I was told they found fluid in his lung and wanted my permission to do a procedure to check it out. I said of course. I asked for them to call me when the procedure was over...I never received a call from any doctor. When I got home from work and finished chores outside, I called the hospital. I have learned by now that the attending nurse can't give you any thing but the basic information. Mike was coming "to" after his op and was trying to pull out the drainage tube that they had inserted into his lung. They had two choices, restraints or heavy sedation. I asked for the sedation...I would rather have him asleep, resting and peaceful - then awake, wondering where he is and restrained...
2-28-09
I went to Woodland Village to gather my husbands things. The bed hold is until the second, he will be in the hospital a long time after that. And even when he is released - I doubt he will be going back. ( To any care facility, around here anyway. Most nursing homes around here - will not eccept patients who require introvenious treatment...)
I called about 4:00 p.m. to see how Mikes day had went. They had let him come out of the anesthesia long enough to try and get him to eat, around lunch time. He would not. About the time I called, ( close to supper ) he was starting to come out of the anesthesia again. I asked if they would put the phone by his ear. I said hello hunny and a few other simple things, he said he loved me and to come get him. Then the nurse got on the phone and said he was getting rambunctious and that they were going to give him some more medicine to calm him down. I shouldn't have asked to talk to him, now he might miss any chance at supper. My poor husband - will this ever end?
3-01-09
Mike was taken off of the sedatives today, only because every time he was coming to - he was trying to rip out the drainage tube. He is now restrained...I was able to talk to Mike tonight. The nurse held the phone by his ear, I told him I loved him and I missed him and to listen to the doctors, so he could come home soon. He was very groggy and mumbled that he loved me to... I hate this terrible desease, my poor husband. Please lord, be there for my husband and help to make him better soon, we need him back home and we miss him terribly...
3-02-09
Mike's new doctor called me today, I was at work. It was very hard to understand what he was telling me, he had an accent. What I could make out, was that he wanted my permission to put Mike on introvenous supplaments ( because he has not been eating and has lost so much weight ). Once again I agreed. He wanted to insert the lines down his nose. They were not able to, Mike was not co-operating, even with sedatives. ( That's my Mike! ) The new plan is to run the supplements through the pick in his arm. They didn't want to do this because of mixing the meds with the supplements, but they think this will hopefully still be ok. I was not able to talk to Mike yet at all today. Every time I call, they are busy with him, or he is sleeping.
7:56 p.m.
I finally was able to talk with Mike. ( I have been lucky to talk with him at least three times every day, but not today. ) The nurse held the phone to his ear and I said the usual things to him. He sounded better, still weak and very groggy though. He told me he loved me and that he would be home soon. I gave him a smooch over the phone and he did the same. The nurse told me he had a big smile on his face! I feel so much better again.
3-03-09
Mike had another spinal tap today, so tomorrow I will know a lot more...I talked with Dr. Loomas tonight as well. Once again he assures me that every thing will be well. He has been corresponding with the other doctors which I was so happy and impressed - to hear.
3-04-09
The doctor called me this morning. He informed me that the spinal tap showed that Mike had not improved any, but has not gotten worse ether...They are going to add a third medicine, if I understood him correctly. And up the dosage of the others. I was also asked permission for them to give him a blood transfusion. He had lost blood, through the drainage tube. My stepson and I are leaving tomorrow morning to go down to see him, for the day. A dear friend of mine, whom I work with, offered to borrow me her car for the trip. Thank you so much Jenny!!
3-05-09
I picked up Mikey at 8:10 ( Mikes' son ), he drove to Milwaukee and back. We got down there a little after 11:00, after stopping for breakfast. Mike was very lively and was awake for the three hours that we were there. He talked a lot, though not always making sense. The doctor and the neurologist both were there, so I was able to speak with them. They both think Mike is doing great, concidering he has such a bad case of this meningitis. I was also told that though Mike is not eating any where near a full meal, he has eaten more in the last two days - then he has in the last week. With his appetite slowly improving and with the introvenous suppliments he is now being given, I am hopeful that his weight will start to improve. Add in the therapy and his appatite is sure to kick in. I gave Mike lots of hugs and kisses and when it was time to go, he thought he should be coming too. Mikey and I made it home in about two and a half hours. I called my husband as soon as I got home. The nurse told me that he was very unhappy with me "leaving him" and that " I had never done that before." She said that was a great improvement with his memory, because last week - he wouldn't have even remembered us being there, much less leaving. She let him hold the phone, so that I could talk to him. He was not happy with me and hung up on me. He is getting his fiestyness and strenght back!!
3-06-09
Mike did not eat any thing today, according to the RN's I spoke with. He was taken on a long walk by therapy, and sat up in the reclyner for a while. I would think that after all of that he would have been really hungry...I haven't been able to talk to him today, he has been sleeping a lot. I am going to call now and hope that he is awake, so that I can speak with him.
8:45 p.m - a few minutes later...
He is still sleeping, the RN on duty would have woke him up, so that I could speak to him - I told her not too...
3-07-09
When I called this morning, they awoke Mike, before I had a chance to tell them not to. As much as I look forward to our daily "talks" I don't like it when they wake him. I doubt if he even knew it was me on the phone this morning. He did get out a vague "I love you" - when I asked to him too say that to me. The rest was random - didn't make sense. I learned later in the day that they had brought Mike out to sit in the reclyner, by the nurses station, he was out there for a good four hours if not more. He was trying to converse with the RN's, some of what he was saying they could make out, some not. He was still restrained, but was not fighting and was "playing" with the stuffed animal (dog ), that one of his sisters had brought him. They also gave him some crayons and so he was coloring - letters. I am so glad they had him out of that tiny room, he was able to interact and see different surroundings. He is sleeping now as I type this, I will call later and hope to talk to him then.
3-08-09
I was not able to talk to Mike last night. But I was able to talk to him this morning, and he sounded good I thought. I think though that when he is feeling better - he try's to sound strong for me. I asked the on duty nurse to look up his weight - I wanted to know if he had gained any, or remained the same. When I called later in the day, the nurse told me his weight as of today. One hundred and five. Good lord, my husband has lost another ten pounds, forty some pounds in the last month. I am sick to my stomach, I don't know how much longer he can go on like this. Or myself. Someone at worked asked me how my husband was doing today. I said he was stable, they said that was a good thing. I blew up at this poor RN who was just trying to show concern, she didn't even know that he was still hospitalized...I opologised twice to her, in the midst of tears...My job is my life line right now and I cant afford to loose it at work like this... I am starting to become hardened, I am not the same person any more...I am so scared.
3-09-09
Finally some good news! ( After yesterday, I really needed some. ) Mike's drainage tube in his lung was removed today as well as the catheter. He also ate most of his breakfast and lunch! When I talked to him tonight his voice sounded much stronger, much like his old self. ( Though still confusion. ) I will be able to sleep tonight.
3-10-09
When I called this a.m. for my usual "good morning honey" to Mike - all I got from him was yelling and shouting - he was having big time issues and the nurse had to take the phone from him - or he was going to throw it at her. I was not upset...I guess I know this was no more directed at her - then me. His mind was else where. After six weeks ( minus one, in between ) of him being hospitalized...this is almost starting to seem routine...Though that makes it easier on me at times...I always use to say to people " I don't know what I would do with out my husband - because he does every thing around here. "
I guess I said that one to many times, because now I am finding out. This road is a tough one, but I know that we are going through this for a reason. "Every thing happens for a reason." I have always applied that to my life and used it comfort others...Now I must continue to remind my self of my belief.
Mike had his ( fourth? ) spinal tap today. He ate good for breakfast and lunch again too. He also sounded good when I talked to him tonight.
3-11-09
I talked to Mike this morning and before noon, he sounded good. The doctor called me in the afternoon. He told me the disease specialist was not happy with the results of the spinal tap. ( AGAIN ) They want to continue on with the current treatment for another week and do another spinal tap at that time. I also talked to two other doctors while at work today. They want to insert a "feeding tube" into Mikes abdomen, instead of giving him the supplaments through the iv's. I was told there is to much danger for infection with the iv's. Once again, I agreed.
9:00 p.m.
I talked to the RN on duty, Mike has lost two more pounds...
3-12-09
I was not able to talk to Mike until tonight, both times that I called earlier in the day - he was sleeping. (When I tried to speak to him tonight, he did not make much sense, but then he was still very drugged up.) He had the feeding tube procedure done today, with no complications, thank God.
3-14-09
My mom and I went down to see Mike today. We were there from about 11:00 a.m. until 2:30 p.m. He was not having one of his better day's by any mean's, but he knew who we were and that we were there. He was not able to verbalize while we there - though he did get out a vague " I love you" to me. He slept most of the time we were there, but did awake for a few minutes about every ten minutes or so...I brought along ScoobieDo - his little dog. Scoobie gave him a kiss and Mike smiled. I let Scoobie give him a kiss a little later and Mike got a discusted look on his face - like " how many times are you going to put me through this?!!" I sat on the bed next to my husband, for most of the time there. We must have had a dozen or so smooches!
My mom got him to smile - she mentioned to the RN how he liked to "grab her" when he was not sick. Mike grinned! I asked for some nail clippers, so mom and I clipped my husbands ( now - very long ) nails. I am hoping to go down this next week again - and spend the night. They will move him to a bigger room for the "occasion" so that I can sleep next to him. Ok - I saved the best for the last! Dr. ----- told us in person today - that the desease specialist - Dr. ------ said that Mike's "numbers " are turning around...In other words - he is slowly getting better. ( It was hard for me to believe this - being with my husband today.) But I will continue to THINK POSITIVE.
3-15-09
I was not able to hear Mike's voice today, he was sleeping every time I called. When I talked to his nurse tonight, she said that he had some "residuals" in his stomach. Meaning that his nutrition supplements that are being administered - are "sitting" there. She said he also has a gurgly sound to his breathing. I was told he might have to be moved to ICU.
3-16-09
Mike was moved to the ICU unit today, they did more tests, one for Pneumonia. I asked why this had happened and was told they were not sure - what had happened up on fourth floor. But he had vomited and the stuff and gone into his lungs. ( Aspiration ) He is now totally incoherent I was told. His mom, dad and some siblings visited him today. They saw a very sick man, with eyes rolled back in his head. When I called and talked to the nurse, I was told that I can not spend the night in his room when I come...Why is this happening - when will this end??? My husband does not deserve this...
3-18-09
I received a phone call Tuesday morning - 3-17-09, at around 5:00 a.m. give or take ten minutes. The RN ( or on duty doctor - I cant remember who), wanted my permission to insert a breathing tube down my husbands throat - he was having trouble breathing. I said yes, then proceeded to make phone calls - to arrange that I could have off of work for the next couple day's...I was in a panic. Later in the day I received another phone call from the hospital asking my permission to insert more "ports", encase they would have to start dialysis...Good lord. I spent the night in near by Waukesha, at my uncle's. I got a much better night's sleep then I would, if I would have slept in the hospital waiting room. I don't think my husband knew I was there yesterday ( Tuesday. ) But today I got him to squeeze my hand a half dozen times or so. He was so sedated, that he was in a sleeping state, but I know he knew I was there. I talked to his ICU doctor, the disease specialist and of course his nurse, they all said he was much better then yesterday. A Chaplin came in the room and asked if she could sit and talk with me. She was so nice and made me feel much better...Once again it was so hard to leave my husband...
3-19-09
They slowly started to ease Mike off of the breathing tube today... he is doing o k with that... But the supplements that they have been giving him - via the feeding tube, have been sitting in his stomach and not moving through the body they way should be. This has been going on - almost since they started feeding him, through the tube...They ex-raid his stomach today and found nothing unusual, thank God. The nurse's held the phone for him, ( for me) a few times today, so that I could talk to him. He raised his eyebrow's, so he recognized my voice. You''ll have that breathing tube out of your mouth soon honey...
3-20-09
I was told tonight that my husband has been in "Isolation" since yesterday. HELLO - WHY AM I JUST NOW FINDING OUT??? An over site I was told. Any one now entering his room has to gown up. I was told he has "MRSA." in the sputum. http://www.mayoclinic.com/health/mrsa/DS00735 Through out the day today - I was also told - that he was not responding to the RN'S or doctors. Though he is now awake, his eyes are not "tracking." And he is not responding to any questions, etc...If this continues, the doctors will be talking to me about doing a tracheotomy...The breathing tube can only stay in for so long - then the risk of infection is too great...You are strong sweetheart - you have been through so much already - you can pull through this...I KNOW YOU CAN!!!
3-22-09
The last two day's have not been encouraging, to say the least. The RN who works the day shift on the weekend - was not very positive or encouraging at all. I felt like I was being a nuisance - every time I called to check on my husband. I "reported" her, to the nurse - who followed her shift. Today she was nicer to me, but there still was that attitude...In all the weeks that my husband has been in this hospital - this is the first time I have encountered a nurse who makes me cringe..
8:55 P.M.
I just talked to a new nurse. She has never had my Mike to care for and had just gotten out of a meeting, to fill her in on his condition...She was VERY NICE and I asked her to go in to his room, hold his hand and hold the phone to his ear. He was awake, I told him we need to know that he is getting better - and to squeeze the nurses hand if he understood...I told him to squeeze tight - and he did - a couple of times!! The nurse said he was looking right at her when he responded. I LOVE YOU HONEY...
3-23-09
Seven of us went down to visit Mike today. He was awake and when he saw me, Mikey and his mom - his eyes opened up in surprise and he even had a little smile!! ( As best a person can smile - with a breathing apparatus down there throat...) His ICU doctor was very encouraging and said Mike is doing much better. We all thought he looked much better as well. A another lumbar puncture was done while we there, the results will be in tomorrow. After we all left, they excavated the breathing apparatus. They were also going to remove the ports in his neck - that they had put in, in case of having to do dialysis. I am going back down tomorrow, by myself, to be with him. It is a long haul back and forth in one day, but it is worth every minute of it. Mike is getting better, please keep him in your prayers!!!
3-24-09
I got down to Milwaukee at 11:00, my friend Jenny borrowed me her car again - god bless you Jenny. I was able to sit with Mike for three hours. ( I have been leaving by 2:00 p.m. so that I can get home in time to do chores - while it is still light. ) I am sure Mike knew it was me, if he didn't - I would like to know- who he thought he was smooching!! I was not suppose to be giving him kisses, because of the "MRSA." But that was not about to stop me, they were just pecks on the lips after all. I sat with him for the three hours and I talked, while he listened. I had him smiling and laughing a bit, at times - reminding him of private jokes that only the two of us and a couple of close friends know about. He is not able to talk yet, he tried, but it was just a soft mumble. I am sure his throat is still sore from the breathing tube...He had a lovely nurse today, she was just a sweetheart. He was unrestrained while I was there and was moving his feet around and putting his arms up in the air, I am sure it felt great to him. My husband, who would never sit down - from the time he arose at 6:00 a.m - until two hours before bedtime - 8:00 or 9:00 p.m. - has now been in a bed for the better part of seven weeks...The doctors gave me the results from his latest lumbar puncture, they were great. To sum it up in lay mans terms - the disease has decreased by half. I am so very happy and so thankful to God!!!
3-25-09
Mike was not very responsive at all today, I talked to him a couple of times while the nurse held the phone. Nothing but breathing. His nurse today was a man who has been in his profession for over thirty years. He was wonderful and gave me lots of suggestions - like bringing Mikes favorite music on c.d.'s or cassettes, the next time I come. Any thing to remind Mike of " his world " he said. He gently reminded me that Mike will have good day's and bad. And that it will take month's upon month's, for him to get better...He told me gently also that - my husband may never get back to his "old self." Something that I have been trying to prepare myself for - for a long time now - it is a very hard and bitter pill to swallow.
7:38 P.M.
I just got off the phone with the hospital, my husband was put back on the breathing tube this afternoon at 4:00 p.m. They had him sitting up in a chair for a few hours, which I thought was a great thing. But when they put him back to bed, they figure he was too weak to breath on his own...My poor, poor husband, how much more can he take???? Sweet Jesus~ please help the doctors and nurses - to take care of my husband. You are stronger then you know Mike - we all love you so very much!!!!!! Kellie and I need you back home, it is so lonely here with out you! I have all of your garden seeds ready for you to plant - they are the special kind - not hybrid! So you can harvest the seeds each year - they will last a life time and then some. Over three acres worth of seeds! Please get well soon Mike - I need you to help me with your garden - I have no clue! I love you sweetheart.
3-26-09
I talked to the resident intern this afternoon, he is a very nice man, he has talked to me a few times in person as well. Very reassuring and pleasant. I had some questions for him of course. He told me that after Mike was put to bed yesterday, that he was not coughing up the stuff in his throat, which is why he had trouble breathing and his heart rate went up. There are two reason's they said - why he was not able to cough.
1. The meningitis was confusing his mind and he didn't know how to cough.
2. He was simply to weak to cough.
He is heavily sedated again today, but is doing well otherwise. He is doing most of the breathing on his own, and I was told that a tracheotomy again - is the direction this is heading. Once again I gave my OK. Then, he will be able to talk and the trach wont have to be a permanent thing. They will also be able to suction out his lungs much easier - then how they are doing it now. After talking to the intern today, I feel so much better then I did last night. I try to remain positive for my kids and everyone else in the family. It is a struggle though, so many ups and downs. I wonder what tomorrow will bring. Sleep well sweetheart.
3-27-09
Mike was stable, no changes for the better, or otherwise - when I called this morning and again this after noon. The doctor whom I spoke with later in the day, asked my permission to do the tracheotomy this coming Monday. He of course explained the risks - every procedure has it's risks, don't they...
6:56 P.M.
The nurse I just spoke to asked "when was the last time I had spoken to anyone today." ( My mental alarm hardly needs to be jump started any more... ) Mike had a seizure this early afternoon she said. Once again I asked - "why wasn't I informed??" As I type this - he is probably having the cat scan done. A doctor will be calling me when the results are in. Life is nothing like it was a few month's ago. Every thing is so surreal...I cant even bare to look at photo's of my Mike and I - the man he use to be. The way we use to be.
Just before midnight-
I was awakened by the bedside phone. The good news is - there is no blood clot. But - Mike had another seizure...they are not sure why. The meningitis possibly - that would be my guess. I figure that I can guess as well as the doctors - by now. My Mike is now on seizure meds as well. Please hang in there sweetheart...
3-28-09
Nothing has changed, Mike is still stable, sedated and sleeping...
3-29-08
Mike is starting to come around, he is opening his eyes for longer periods and starting to respond again. This morning while the nurse was washing his hands, he was pulling them away. I had her hold the phone to his ear so that I could talk to him. He opened his eyes...COME ON HONEY - FIGHT!!!
3-30-09
WONDERFUL WONDERFUL WONDERFUL NEWS!!! Mike's tracheotomy procedure was successful - no complications! I talked to him this afternoon - his nurse for the day said he smiled big time! He is not on sedatives now and they even had him sitting up in a chair for about three hours - UNRESTRAINED!!! He "let them know" when he was tired and wanted to go back to bed - by pointing to his bed, then shaking his head yes - when asked if he was tired...He didn't try to yank the iv's etc.out - like he has in the past...I can hardly believe it! The nurses all say is doing great, very responsive - giving them the thumbs up and reacting appropriate for the most part...You have made great strides in just one day honey - we will keep praying for you - there are people praying for you that have never even met you and more then likely - never will. We LOVE YOU Mike!!!
3-31-09
Mikes mom, dad and some sisters and brothers - went down to visit him today. The guys had him laughing and smiling! They brought him a c.d. player with some of his favorite c.d.s...He pointed to the c.d. player - he wanted to hear music!! His son and I will be going down tomorrow to see him - I cant wait!
4-01-09
Not only did Mikey go down today - but Kellie came too! She has not seen her dad for WELL over six weeks, if not longer. This has been so hard on the kids. Kellie's way of dealing with her dad's illness is to not ask questions and stick her head in the sand, so to speak. Mikey has been dealing with it differently, in a way he has been trying to take over his dad's role I believe....Coming over to snow blow and shovel - vacuum, take care of the horses - even do our laundry!! And this kid has his own family to take care of!!
My Mike is doing so much better. He smiled when he saw the three of us walk in the room. It was very frustrating for him, as well as us - not to mention heart wrenching - because he couldn't talk to us. But he did do a wonderful job of lip sinking his wants to us. Some we understood...The speech therapist was there while we were, she pointed to each one of us and asked who we were. Mike lipped sinked appropriately - " my boy," "Kellie," "Lori." He was so thirsty, he kept pointing to - what Kellie later figured out - was a can of his Mountain Dew. ( We later moved it out of his line of sight... ) I wanted to help him so - give him something to drink, but I couldn't. How helpless I felt, seeing my once strong, strong husband - lip sinking "please - thirsty." I went to his nurse and told him that my husband was thirsty. I knew that Mike was getting most every thing he needed via the IV'S and the feeding tube...But still, his mouth must have been so parched. The nurse gave us a glass of water and a stick with a sponge. Kellie dipped the sponge in the water and then put it in her dad's mouth. I wanted to take care of him - but Kellie needed to do this and did such a wonderful job.When Mike had to cough, she told him " come on dad - cough - you can do it!" Then when he coughed, she knew to take a tissue and sop up the Flem that had came out of the trach... She was so caring and gentle with her dad, it was so hard for me not to cry. I am so proud of these kids...It so damn hard to see my once strong husband, now so weak and helpless...It is horrible, but I keep telling my self - HE IS GETTING BETTER!!!!!!!!!!!
4-2-09
Mike was moved out of ICU today! The first time I called to talk to him - when the nurse told him I was on the phone - he reached to take it from her and held the phone by himself!! When I told him "I love him" and "good bye sweetheart" and gave him smooches over the phone - I could hear him give me smooches back! I cried in happiness, as I hung up the phone. We smooched this way a couple more times through out the day and even if it was for just brief moments - I was able to feel a tad closer to my Mike...
4-3-09
Mike was very rambunctious today, they had to keep him restrained of course. He is getting back to his old ornery self! We smooched again today, a couple of times...His niece Jessie and a good friend - Tommy, are in Milwaukee now. Jess will be visiting her Uncle Mike tomorrow.
4-4-09
When I called the hospital this morning, Mike's nurse told me that he pulled out his pick line yesterday. He is getting so strong that he is loosening his restraints. He is back to keeping the nurses on their toes!
4-5-09
Mike had a very busy day today with therapy etc. I am so glad, he needs that interaction and exercise. I talked to him a couple of times today and we exchanged our smooches. I look forward to our "talks" and hearing the sound of his lips smooching me, it's the only sound I can hear from him now. And I cherish every second...
Tomorrow he will be having his ( sixth? ) lumbar puncture. ( PLEASE everyone - pray for wonderful results...if they are not what the doctors are hoping for - then the next step is to infuse the medicine into his spinal cord - Mike has been through to much, please continue your prayers for my Mike!
4-6-09
Mike's mom, dad, Bernie and Steve went down to see Mike today. ( Steve is Mike's older brother, he has been so wonderful to take family down just about every week. ) Mike had a very busy day, his lumbar punctar, an ultra sound of his abdomen and I forget what else...So family was only able to see him for a few short minutes here and there....
4-7-09
My mom and I went down to see Mike today. I was told he had an active morning - moving his legs and arms about. He was asleep for most of the time that we there - waking only when he had to cough up the Flem. Mom helped with the suction tube, when he had to cough - and no nurse was available...I know he knew we were there. I talked with two different doctors before we left. I started to cry, when I was told that the disease specialist, was not happy with the results from the lumbar test yesterday - the numbers had only decreased slightly. This was not the news I was expecting to hear. They are going to start a fourth medicine and increase the amphoterisan dosage - if I understood them correctly...They also took a culture and should have the results of that in a day or two...Hopefully those results will be good, other wise - the next step in treatment is going to be something that is rarely done - infusing the meds. into his spinal cord. My Mike has been to through much already!!! Please lord, I know you have a purpose...But please don't put Mike through this!!!
4-8-09
No change this morning, with the exception that Mike is running a temp. An almost on going thing since he has been sick...He still is not responsive, sleeping most of the time. I don't understand, he was doing so well when the kids and I visited him last week. This mental roller coaster ride is wearing me out...
9:11 P.M.
The nurse held the phone to Mikes' ear, I told my husband how much I love him - and how much the kids loved him...I gave him kisses - nothing back. I asked the nurse if he responded at all to my voice - NOTHING. I HATE THIS TERRIBLE, ROTTEN DISEASE - TORTURE - FOR MY MIKE, for all of us...
2-14-09
Woodlands Home Health Care was here this morning. I had a day off from work...Mike had a severe reaction to the amphoterisan , his temp. spiked to over 104 and his blood pressure sky rocketed. He was shaking uncontrollably, it is amazing he didn't bounce off of the recliner - seriously. 911 was called. He was taken to Oconto Falls Hospital, where he spent the whole day. I am very discusted with this hospital. They gave him another dose of the amphoterisan, even after knowing that he had - had a terrible reaction to it earlier. When I was there at seven p.m. to pick him up, they expected me to help him walk out. He could barely stand! Three "nurses" couldn't help him to walk - finally one young gal ran to get a wheel chair. Koodo's to her - but excuse me - isn't this standard procedure for a hospital discharge - much less an ER discharge ??? They got him in our car and I left. I kept looking at Mike as I was driving, he was hallucinating...looked like he was trying to smoke a cigarette...I wanted him to rest, so didn't try to talk to him for the first half of the way home. When I did start to ask him questions, he took a while to respond, when he did try to respond, he was not making sense - gibberish. I called back Oconto Falls Hospital to tell them, they put me on hold, when they got back on - I was told to NOT BRING HIM BACK. They told me to call Aurora or to call the disease specialist. I was beside myself - how in the h - - - was I going to get my husband out of the vehicle when I got home??? Thanks to my mom, my stepdaughter was waiting for me as soon as I pulled in. I pulled as close to the door as I could. Mike didn't seem know who we were ...He was combative and we both had to just force him out of the car. He was still fighting us - Kellie grabbed him from behind, underneath his arm pits and dragged him to the house. We made him as comfortable as we could, on the floor. Blankets, pillow's, ect. And 911 was called again - for the second time this day. I insisted that this time he be taken back down to Aurora.
2-17-09
I have been on the phone more in the last few weeks, then I have been in the last half year I bet. As of today, Mike will be going to a care facility for a short term stay. I was hoping to bring him home, with in home health care and therapy visits. As fast as I blink an eye, things change. The new plan is - is that my husband will be admitted to a local care facility, by Thursday. For short term care...
10:15 a.m.
I just got off the phone with Dr. Loomas, this man is AWESOME. Every time I talk with him, he makes me feel so much better, so more hope-full.I have never met this man, yet - the first time I called him - he gave me so much hope. Not only did he give me his HOME number, but also his WIFE'S cell number - so that I could get ahold of him - while he was on a twelve day vacation with his family! Dr. Loomas continually assures me that me my husband will get better one day ( but it will be a long haul... ) This man whom I have never met, has made this living nightmare - just a bit more bearable.
2-18-09
I spent the better part of the day, with my husband, at Aurora. He slept most of the time I was there, but that is ok, it is a good thing. I took tons of paper work along, to work on while I was there. I feel I made some headway. The guardianship that I need in order to get Mike into a rehab facility is under way. Tomorrow I will be down to Aurora again.
2-19-09
I didn't need to go to Aurora. My mom and I were on our way, when I got a call saying that Mike was going to be transported toWoodland Village Nursing Home today. He was transported by ambulance instead of the traditional medical transport. Only because they were concerned that with the hour drive, his impulsiveness to get up - would cause them trouble in route.
Ton's of paper work, not surprising though. And not finished yet by a long shot.
After my husband was settled in, I left for home. Thank goodness which is now - only a thirteen mile drive. Once home I grabbed pictures and anything I could think of, that would comfort him - at his temporary home away from home.
2-20-09
This morning one of my very good friends, her name is Lori also, came over to help me mend our horse fence. She brought every thing I needed. Then it was off to work. After work I came back home to do the p.m. chores. Then I headed to see my husband. He had a long day with visiters and so was very tired and cranky...I was able to be there when our doctor stopped in. He has a plan to try and get Mike back to eating. I was successful in getting him to eat a few pieces of apple for me...
2-21-09
I received an early phone call from Woodlands, they were not happy with my husbands condition and asked my permission to have him sent back to Aurora. I told them yes, of course. A couple of hours later I received a call from Aurora. The doctor who had been treating Mike said they could not help him any more. I could let him come back to the Nursing Home and hope he would start eating, or let him come home with the same hopes - or have him transferred to St. Luke's in Milwaukee. There they would be able to better aggressively treat this meningitis. Through his spinal cord. Of course I agreed, then I lost it. I was at work when I got this call, every one at my job has been so wonderful, willing to help me with anything and everything. I have such a wonderful support group of friends... One wonderful elder named Ella finally convinced me to leave work to go and be with Mike. She told me they all loved me. I broke down agian, but it does not take much anymore. I got home and called Aurora, good thing I did, Aurora is an hour away and we had bad roads today because of snow. Mike would be leaving for Milwaukee via ambulance in fifteen minutes. I will not see him after all. Now that I am home though, I am just going to stay here and work on the loads of paper work I need for medicaid...That appointment is this coming Tuesday. I am mentally exausted ...
2-22-09
I spoke to my husband a few times today. He always sounds better in the mornings. I asked him if he knew where he was. He said something I couldn't make out and then I told him "your in a hospital in Milwaukee." He then said "this is getting rediculous."
8:51 a.m.
Mike's new infectious disease doctor called me. He said Mike is better this morning then he was yesterday when he arrived. He is not going to pursue the spinal infusion of medicine, he said that has it's own host of side affects and he had never used that patecular treatment in over thirty years. He is going to try amphoterisan agian, but a different type, or dosage. He also told me that after hearing of Mike's results after his second spinal tap - that he was not happy that the disease had not detereorated at all. He said after a week of treatment with this latest plan, they will do another spinal tap. ( Apparently they should not be done more often then every couple of weeks. ) They should know more at that point. So Mike will be there for at least week. I hope they keep him longer...for his sake and ours.
6:49 a.m.
I got off the phone with Mike's nurse. She said they had gotten him to take a few bites of food today, but that then, he had thrown up. A whole green bean was in the mixture. They now believe that his brain is not getting the message through - to chew. So he has now been put on a pureed diet. This is a hard one for me to deal with...he is trying to eat which is a major improvement...but he cant seem to figure out that he has to chew...My husband never in a million years would have wanted to be like this. I feel so damned helpless. I have been going to bed at night with his clothes, to hug. So I can at least feel closer...
2-23-09
Dr. Loomas called me this morning at around 6.am. He apologized for calling so early from California, but said that they had a long night and his wife had just been checking their messages...He said he has known Dr. ----- for years and assured me he is an exelent desease specialist. Once again I am hopefull that every thing will be ok
2-24-09
St. Lukes called me and said that our insurance wont cover Mike. Why don't they find these things out first, before admitting a person...They asked my permission to transfer him to a different hospital in Milwaukee - Aurora Sinai Medical Center. Of course I agreed. He arrived there in the evening.
2-25-09
My brother in law took a few of us down to Milwaukee today, to see Mike and so that I could talk with his new doctor. ( Thanks so much Steve~ ) My in law's and my two step children also came. Mike looked so much better, then when he had been in the care facility. ( While there, he couldn't get up on his own, much less walk and could barely get the silver ware to his mouth. I really think Aurora jumped the gun, in sending him there. ) Mike was put back on a milder form of amphoterisan. Today he had already been taken on a good walk by therapy, and I saw him eat with much better ease. His new doctor told me his plan and barring any complications - Mike will be there for at least ten day's. He seems to be responding well to this new treatment ( that was started at St. Lukes. ) Family joked with him and got him to smile and laugh a bit. And he is getting cranky and demanding with me again - a good sign. ( He was asking me to get him cigarettes and was not happy when I didn't. ) Keep up the good work honey~
2-26-09
Mike sounded great when I talked to him today, other family members thought so as well~
2-27-09
Mike didn't sound so good when I called him this morning, very confused again and weak sounding...Mt. Sinai called me later in the morning. ( I was at work, have my cell phone with me 24-7 now. ) I was told they found fluid in his lung and wanted my permission to do a procedure to check it out. I said of course. I asked for them to call me when the procedure was over...I never received a call from any doctor. When I got home from work and finished chores outside, I called the hospital. I have learned by now that the attending nurse can't give you any thing but the basic information. Mike was coming "to" after his op and was trying to pull out the drainage tube that they had inserted into his lung. They had two choices, restraints or heavy sedation. I asked for the sedation...I would rather have him asleep, resting and peaceful - then awake, wondering where he is and restrained...
2-28-09
I went to Woodland Village to gather my husbands things. The bed hold is until the second, he will be in the hospital a long time after that. And even when he is released - I doubt he will be going back. ( To any care facility, around here anyway. Most nursing homes around here - will not eccept patients who require introvenious treatment...)
I called about 4:00 p.m. to see how Mikes day had went. They had let him come out of the anesthesia long enough to try and get him to eat, around lunch time. He would not. About the time I called, ( close to supper ) he was starting to come out of the anesthesia again. I asked if they would put the phone by his ear. I said hello hunny and a few other simple things, he said he loved me and to come get him. Then the nurse got on the phone and said he was getting rambunctious and that they were going to give him some more medicine to calm him down. I shouldn't have asked to talk to him, now he might miss any chance at supper. My poor husband - will this ever end?
3-01-09
Mike was taken off of the sedatives today, only because every time he was coming to - he was trying to rip out the drainage tube. He is now restrained...I was able to talk to Mike tonight. The nurse held the phone by his ear, I told him I loved him and I missed him and to listen to the doctors, so he could come home soon. He was very groggy and mumbled that he loved me to... I hate this terrible desease, my poor husband. Please lord, be there for my husband and help to make him better soon, we need him back home and we miss him terribly...
3-02-09
Mike's new doctor called me today, I was at work. It was very hard to understand what he was telling me, he had an accent. What I could make out, was that he wanted my permission to put Mike on introvenous supplaments ( because he has not been eating and has lost so much weight ). Once again I agreed. He wanted to insert the lines down his nose. They were not able to, Mike was not co-operating, even with sedatives. ( That's my Mike! ) The new plan is to run the supplements through the pick in his arm. They didn't want to do this because of mixing the meds with the supplements, but they think this will hopefully still be ok. I was not able to talk to Mike yet at all today. Every time I call, they are busy with him, or he is sleeping.
7:56 p.m.
I finally was able to talk with Mike. ( I have been lucky to talk with him at least three times every day, but not today. ) The nurse held the phone to his ear and I said the usual things to him. He sounded better, still weak and very groggy though. He told me he loved me and that he would be home soon. I gave him a smooch over the phone and he did the same. The nurse told me he had a big smile on his face! I feel so much better again.
3-03-09
Mike had another spinal tap today, so tomorrow I will know a lot more...I talked with Dr. Loomas tonight as well. Once again he assures me that every thing will be well. He has been corresponding with the other doctors which I was so happy and impressed - to hear.
3-04-09
The doctor called me this morning. He informed me that the spinal tap showed that Mike had not improved any, but has not gotten worse ether...They are going to add a third medicine, if I understood him correctly. And up the dosage of the others. I was also asked permission for them to give him a blood transfusion. He had lost blood, through the drainage tube. My stepson and I are leaving tomorrow morning to go down to see him, for the day. A dear friend of mine, whom I work with, offered to borrow me her car for the trip. Thank you so much Jenny!!
3-05-09
I picked up Mikey at 8:10 ( Mikes' son ), he drove to Milwaukee and back. We got down there a little after 11:00, after stopping for breakfast. Mike was very lively and was awake for the three hours that we were there. He talked a lot, though not always making sense. The doctor and the neurologist both were there, so I was able to speak with them. They both think Mike is doing great, concidering he has such a bad case of this meningitis. I was also told that though Mike is not eating any where near a full meal, he has eaten more in the last two days - then he has in the last week. With his appetite slowly improving and with the introvenous suppliments he is now being given, I am hopeful that his weight will start to improve. Add in the therapy and his appatite is sure to kick in. I gave Mike lots of hugs and kisses and when it was time to go, he thought he should be coming too. Mikey and I made it home in about two and a half hours. I called my husband as soon as I got home. The nurse told me that he was very unhappy with me "leaving him" and that " I had never done that before." She said that was a great improvement with his memory, because last week - he wouldn't have even remembered us being there, much less leaving. She let him hold the phone, so that I could talk to him. He was not happy with me and hung up on me. He is getting his fiestyness and strenght back!!
3-06-09
Mike did not eat any thing today, according to the RN's I spoke with. He was taken on a long walk by therapy, and sat up in the reclyner for a while. I would think that after all of that he would have been really hungry...I haven't been able to talk to him today, he has been sleeping a lot. I am going to call now and hope that he is awake, so that I can speak with him.
8:45 p.m - a few minutes later...
He is still sleeping, the RN on duty would have woke him up, so that I could speak to him - I told her not too...
3-07-09
When I called this morning, they awoke Mike, before I had a chance to tell them not to. As much as I look forward to our daily "talks" I don't like it when they wake him. I doubt if he even knew it was me on the phone this morning. He did get out a vague "I love you" - when I asked to him too say that to me. The rest was random - didn't make sense. I learned later in the day that they had brought Mike out to sit in the reclyner, by the nurses station, he was out there for a good four hours if not more. He was trying to converse with the RN's, some of what he was saying they could make out, some not. He was still restrained, but was not fighting and was "playing" with the stuffed animal (dog ), that one of his sisters had brought him. They also gave him some crayons and so he was coloring - letters. I am so glad they had him out of that tiny room, he was able to interact and see different surroundings. He is sleeping now as I type this, I will call later and hope to talk to him then.
3-08-09
I was not able to talk to Mike last night. But I was able to talk to him this morning, and he sounded good I thought. I think though that when he is feeling better - he try's to sound strong for me. I asked the on duty nurse to look up his weight - I wanted to know if he had gained any, or remained the same. When I called later in the day, the nurse told me his weight as of today. One hundred and five. Good lord, my husband has lost another ten pounds, forty some pounds in the last month. I am sick to my stomach, I don't know how much longer he can go on like this. Or myself. Someone at worked asked me how my husband was doing today. I said he was stable, they said that was a good thing. I blew up at this poor RN who was just trying to show concern, she didn't even know that he was still hospitalized...I opologised twice to her, in the midst of tears...My job is my life line right now and I cant afford to loose it at work like this... I am starting to become hardened, I am not the same person any more...I am so scared.
3-09-09
Finally some good news! ( After yesterday, I really needed some. ) Mike's drainage tube in his lung was removed today as well as the catheter. He also ate most of his breakfast and lunch! When I talked to him tonight his voice sounded much stronger, much like his old self. ( Though still confusion. ) I will be able to sleep tonight.
3-10-09
When I called this a.m. for my usual "good morning honey" to Mike - all I got from him was yelling and shouting - he was having big time issues and the nurse had to take the phone from him - or he was going to throw it at her. I was not upset...I guess I know this was no more directed at her - then me. His mind was else where. After six weeks ( minus one, in between ) of him being hospitalized...this is almost starting to seem routine...Though that makes it easier on me at times...I always use to say to people " I don't know what I would do with out my husband - because he does every thing around here. "
I guess I said that one to many times, because now I am finding out. This road is a tough one, but I know that we are going through this for a reason. "Every thing happens for a reason." I have always applied that to my life and used it comfort others...Now I must continue to remind my self of my belief.
Mike had his ( fourth? ) spinal tap today. He ate good for breakfast and lunch again too. He also sounded good when I talked to him tonight.
3-11-09
I talked to Mike this morning and before noon, he sounded good. The doctor called me in the afternoon. He told me the disease specialist was not happy with the results of the spinal tap. ( AGAIN ) They want to continue on with the current treatment for another week and do another spinal tap at that time. I also talked to two other doctors while at work today. They want to insert a "feeding tube" into Mikes abdomen, instead of giving him the supplaments through the iv's. I was told there is to much danger for infection with the iv's. Once again, I agreed.
9:00 p.m.
I talked to the RN on duty, Mike has lost two more pounds...
3-12-09
I was not able to talk to Mike until tonight, both times that I called earlier in the day - he was sleeping. (When I tried to speak to him tonight, he did not make much sense, but then he was still very drugged up.) He had the feeding tube procedure done today, with no complications, thank God.
3-14-09
My mom and I went down to see Mike today. We were there from about 11:00 a.m. until 2:30 p.m. He was not having one of his better day's by any mean's, but he knew who we were and that we were there. He was not able to verbalize while we there - though he did get out a vague " I love you" to me. He slept most of the time we were there, but did awake for a few minutes about every ten minutes or so...I brought along ScoobieDo - his little dog. Scoobie gave him a kiss and Mike smiled. I let Scoobie give him a kiss a little later and Mike got a discusted look on his face - like " how many times are you going to put me through this?!!" I sat on the bed next to my husband, for most of the time there. We must have had a dozen or so smooches!
My mom got him to smile - she mentioned to the RN how he liked to "grab her" when he was not sick. Mike grinned! I asked for some nail clippers, so mom and I clipped my husbands ( now - very long ) nails. I am hoping to go down this next week again - and spend the night. They will move him to a bigger room for the "occasion" so that I can sleep next to him. Ok - I saved the best for the last! Dr. ----- told us in person today - that the desease specialist - Dr. ------ said that Mike's "numbers " are turning around...In other words - he is slowly getting better. ( It was hard for me to believe this - being with my husband today.) But I will continue to THINK POSITIVE.
3-15-09
I was not able to hear Mike's voice today, he was sleeping every time I called. When I talked to his nurse tonight, she said that he had some "residuals" in his stomach. Meaning that his nutrition supplements that are being administered - are "sitting" there. She said he also has a gurgly sound to his breathing. I was told he might have to be moved to ICU.
3-16-09
Mike was moved to the ICU unit today, they did more tests, one for Pneumonia. I asked why this had happened and was told they were not sure - what had happened up on fourth floor. But he had vomited and the stuff and gone into his lungs. ( Aspiration ) He is now totally incoherent I was told. His mom, dad and some siblings visited him today. They saw a very sick man, with eyes rolled back in his head. When I called and talked to the nurse, I was told that I can not spend the night in his room when I come...Why is this happening - when will this end??? My husband does not deserve this...
3-18-09
I received a phone call Tuesday morning - 3-17-09, at around 5:00 a.m. give or take ten minutes. The RN ( or on duty doctor - I cant remember who), wanted my permission to insert a breathing tube down my husbands throat - he was having trouble breathing. I said yes, then proceeded to make phone calls - to arrange that I could have off of work for the next couple day's...I was in a panic. Later in the day I received another phone call from the hospital asking my permission to insert more "ports", encase they would have to start dialysis...Good lord. I spent the night in near by Waukesha, at my uncle's. I got a much better night's sleep then I would, if I would have slept in the hospital waiting room. I don't think my husband knew I was there yesterday ( Tuesday. ) But today I got him to squeeze my hand a half dozen times or so. He was so sedated, that he was in a sleeping state, but I know he knew I was there. I talked to his ICU doctor, the disease specialist and of course his nurse, they all said he was much better then yesterday. A Chaplin came in the room and asked if she could sit and talk with me. She was so nice and made me feel much better...Once again it was so hard to leave my husband...
3-19-09
They slowly started to ease Mike off of the breathing tube today... he is doing o k with that... But the supplements that they have been giving him - via the feeding tube, have been sitting in his stomach and not moving through the body they way should be. This has been going on - almost since they started feeding him, through the tube...They ex-raid his stomach today and found nothing unusual, thank God. The nurse's held the phone for him, ( for me) a few times today, so that I could talk to him. He raised his eyebrow's, so he recognized my voice. You''ll have that breathing tube out of your mouth soon honey...
3-20-09
I was told tonight that my husband has been in "Isolation" since yesterday. HELLO - WHY AM I JUST NOW FINDING OUT??? An over site I was told. Any one now entering his room has to gown up. I was told he has "MRSA." in the sputum. http://www.mayoclinic.com/health/mrsa/DS00735 Through out the day today - I was also told - that he was not responding to the RN'S or doctors. Though he is now awake, his eyes are not "tracking." And he is not responding to any questions, etc...If this continues, the doctors will be talking to me about doing a tracheotomy...The breathing tube can only stay in for so long - then the risk of infection is too great...You are strong sweetheart - you have been through so much already - you can pull through this...I KNOW YOU CAN!!!
3-22-09
The last two day's have not been encouraging, to say the least. The RN who works the day shift on the weekend - was not very positive or encouraging at all. I felt like I was being a nuisance - every time I called to check on my husband. I "reported" her, to the nurse - who followed her shift. Today she was nicer to me, but there still was that attitude...In all the weeks that my husband has been in this hospital - this is the first time I have encountered a nurse who makes me cringe..
8:55 P.M.
I just talked to a new nurse. She has never had my Mike to care for and had just gotten out of a meeting, to fill her in on his condition...She was VERY NICE and I asked her to go in to his room, hold his hand and hold the phone to his ear. He was awake, I told him we need to know that he is getting better - and to squeeze the nurses hand if he understood...I told him to squeeze tight - and he did - a couple of times!! The nurse said he was looking right at her when he responded. I LOVE YOU HONEY...
3-23-09
Seven of us went down to visit Mike today. He was awake and when he saw me, Mikey and his mom - his eyes opened up in surprise and he even had a little smile!! ( As best a person can smile - with a breathing apparatus down there throat...) His ICU doctor was very encouraging and said Mike is doing much better. We all thought he looked much better as well. A another lumbar puncture was done while we there, the results will be in tomorrow. After we all left, they excavated the breathing apparatus. They were also going to remove the ports in his neck - that they had put in, in case of having to do dialysis. I am going back down tomorrow, by myself, to be with him. It is a long haul back and forth in one day, but it is worth every minute of it. Mike is getting better, please keep him in your prayers!!!
3-24-09
I got down to Milwaukee at 11:00, my friend Jenny borrowed me her car again - god bless you Jenny. I was able to sit with Mike for three hours. ( I have been leaving by 2:00 p.m. so that I can get home in time to do chores - while it is still light. ) I am sure Mike knew it was me, if he didn't - I would like to know- who he thought he was smooching!! I was not suppose to be giving him kisses, because of the "MRSA." But that was not about to stop me, they were just pecks on the lips after all. I sat with him for the three hours and I talked, while he listened. I had him smiling and laughing a bit, at times - reminding him of private jokes that only the two of us and a couple of close friends know about. He is not able to talk yet, he tried, but it was just a soft mumble. I am sure his throat is still sore from the breathing tube...He had a lovely nurse today, she was just a sweetheart. He was unrestrained while I was there and was moving his feet around and putting his arms up in the air, I am sure it felt great to him. My husband, who would never sit down - from the time he arose at 6:00 a.m - until two hours before bedtime - 8:00 or 9:00 p.m. - has now been in a bed for the better part of seven weeks...The doctors gave me the results from his latest lumbar puncture, they were great. To sum it up in lay mans terms - the disease has decreased by half. I am so very happy and so thankful to God!!!
3-25-09
Mike was not very responsive at all today, I talked to him a couple of times while the nurse held the phone. Nothing but breathing. His nurse today was a man who has been in his profession for over thirty years. He was wonderful and gave me lots of suggestions - like bringing Mikes favorite music on c.d.'s or cassettes, the next time I come. Any thing to remind Mike of " his world " he said. He gently reminded me that Mike will have good day's and bad. And that it will take month's upon month's, for him to get better...He told me gently also that - my husband may never get back to his "old self." Something that I have been trying to prepare myself for - for a long time now - it is a very hard and bitter pill to swallow.
7:38 P.M.
I just got off the phone with the hospital, my husband was put back on the breathing tube this afternoon at 4:00 p.m. They had him sitting up in a chair for a few hours, which I thought was a great thing. But when they put him back to bed, they figure he was too weak to breath on his own...My poor, poor husband, how much more can he take???? Sweet Jesus~ please help the doctors and nurses - to take care of my husband. You are stronger then you know Mike - we all love you so very much!!!!!! Kellie and I need you back home, it is so lonely here with out you! I have all of your garden seeds ready for you to plant - they are the special kind - not hybrid! So you can harvest the seeds each year - they will last a life time and then some. Over three acres worth of seeds! Please get well soon Mike - I need you to help me with your garden - I have no clue! I love you sweetheart.
3-26-09
I talked to the resident intern this afternoon, he is a very nice man, he has talked to me a few times in person as well. Very reassuring and pleasant. I had some questions for him of course. He told me that after Mike was put to bed yesterday, that he was not coughing up the stuff in his throat, which is why he had trouble breathing and his heart rate went up. There are two reason's they said - why he was not able to cough.
1. The meningitis was confusing his mind and he didn't know how to cough.
2. He was simply to weak to cough.
He is heavily sedated again today, but is doing well otherwise. He is doing most of the breathing on his own, and I was told that a tracheotomy again - is the direction this is heading. Once again I gave my OK. Then, he will be able to talk and the trach wont have to be a permanent thing. They will also be able to suction out his lungs much easier - then how they are doing it now. After talking to the intern today, I feel so much better then I did last night. I try to remain positive for my kids and everyone else in the family. It is a struggle though, so many ups and downs. I wonder what tomorrow will bring. Sleep well sweetheart.
3-27-09
Mike was stable, no changes for the better, or otherwise - when I called this morning and again this after noon. The doctor whom I spoke with later in the day, asked my permission to do the tracheotomy this coming Monday. He of course explained the risks - every procedure has it's risks, don't they...
6:56 P.M.
The nurse I just spoke to asked "when was the last time I had spoken to anyone today." ( My mental alarm hardly needs to be jump started any more... ) Mike had a seizure this early afternoon she said. Once again I asked - "why wasn't I informed??" As I type this - he is probably having the cat scan done. A doctor will be calling me when the results are in. Life is nothing like it was a few month's ago. Every thing is so surreal...I cant even bare to look at photo's of my Mike and I - the man he use to be. The way we use to be.
Just before midnight-
I was awakened by the bedside phone. The good news is - there is no blood clot. But - Mike had another seizure...they are not sure why. The meningitis possibly - that would be my guess. I figure that I can guess as well as the doctors - by now. My Mike is now on seizure meds as well. Please hang in there sweetheart...
3-28-09
Nothing has changed, Mike is still stable, sedated and sleeping...
3-29-08
Mike is starting to come around, he is opening his eyes for longer periods and starting to respond again. This morning while the nurse was washing his hands, he was pulling them away. I had her hold the phone to his ear so that I could talk to him. He opened his eyes...COME ON HONEY - FIGHT!!!
3-30-09
WONDERFUL WONDERFUL WONDERFUL NEWS!!! Mike's tracheotomy procedure was successful - no complications! I talked to him this afternoon - his nurse for the day said he smiled big time! He is not on sedatives now and they even had him sitting up in a chair for about three hours - UNRESTRAINED!!! He "let them know" when he was tired and wanted to go back to bed - by pointing to his bed, then shaking his head yes - when asked if he was tired...He didn't try to yank the iv's etc.out - like he has in the past...I can hardly believe it! The nurses all say is doing great, very responsive - giving them the thumbs up and reacting appropriate for the most part...You have made great strides in just one day honey - we will keep praying for you - there are people praying for you that have never even met you and more then likely - never will. We LOVE YOU Mike!!!
3-31-09
Mikes mom, dad and some sisters and brothers - went down to visit him today. The guys had him laughing and smiling! They brought him a c.d. player with some of his favorite c.d.s...He pointed to the c.d. player - he wanted to hear music!! His son and I will be going down tomorrow to see him - I cant wait!
4-01-09
Not only did Mikey go down today - but Kellie came too! She has not seen her dad for WELL over six weeks, if not longer. This has been so hard on the kids. Kellie's way of dealing with her dad's illness is to not ask questions and stick her head in the sand, so to speak. Mikey has been dealing with it differently, in a way he has been trying to take over his dad's role I believe....Coming over to snow blow and shovel - vacuum, take care of the horses - even do our laundry!! And this kid has his own family to take care of!!
My Mike is doing so much better. He smiled when he saw the three of us walk in the room. It was very frustrating for him, as well as us - not to mention heart wrenching - because he couldn't talk to us. But he did do a wonderful job of lip sinking his wants to us. Some we understood...The speech therapist was there while we were, she pointed to each one of us and asked who we were. Mike lipped sinked appropriately - " my boy," "Kellie," "Lori." He was so thirsty, he kept pointing to - what Kellie later figured out - was a can of his Mountain Dew. ( We later moved it out of his line of sight... ) I wanted to help him so - give him something to drink, but I couldn't. How helpless I felt, seeing my once strong, strong husband - lip sinking "please - thirsty." I went to his nurse and told him that my husband was thirsty. I knew that Mike was getting most every thing he needed via the IV'S and the feeding tube...But still, his mouth must have been so parched. The nurse gave us a glass of water and a stick with a sponge. Kellie dipped the sponge in the water and then put it in her dad's mouth. I wanted to take care of him - but Kellie needed to do this and did such a wonderful job.When Mike had to cough, she told him " come on dad - cough - you can do it!" Then when he coughed, she knew to take a tissue and sop up the Flem that had came out of the trach... She was so caring and gentle with her dad, it was so hard for me not to cry. I am so proud of these kids...It so damn hard to see my once strong husband, now so weak and helpless...It is horrible, but I keep telling my self - HE IS GETTING BETTER!!!!!!!!!!!
4-2-09
Mike was moved out of ICU today! The first time I called to talk to him - when the nurse told him I was on the phone - he reached to take it from her and held the phone by himself!! When I told him "I love him" and "good bye sweetheart" and gave him smooches over the phone - I could hear him give me smooches back! I cried in happiness, as I hung up the phone. We smooched this way a couple more times through out the day and even if it was for just brief moments - I was able to feel a tad closer to my Mike...
4-3-09
Mike was very rambunctious today, they had to keep him restrained of course. He is getting back to his old ornery self! We smooched again today, a couple of times...His niece Jessie and a good friend - Tommy, are in Milwaukee now. Jess will be visiting her Uncle Mike tomorrow.
4-4-09
When I called the hospital this morning, Mike's nurse told me that he pulled out his pick line yesterday. He is getting so strong that he is loosening his restraints. He is back to keeping the nurses on their toes!
4-5-09
Mike had a very busy day today with therapy etc. I am so glad, he needs that interaction and exercise. I talked to him a couple of times today and we exchanged our smooches. I look forward to our "talks" and hearing the sound of his lips smooching me, it's the only sound I can hear from him now. And I cherish every second...
Tomorrow he will be having his ( sixth? ) lumbar puncture. ( PLEASE everyone - pray for wonderful results...if they are not what the doctors are hoping for - then the next step is to infuse the medicine into his spinal cord - Mike has been through to much, please continue your prayers for my Mike!
4-6-09
Mike's mom, dad, Bernie and Steve went down to see Mike today. ( Steve is Mike's older brother, he has been so wonderful to take family down just about every week. ) Mike had a very busy day, his lumbar punctar, an ultra sound of his abdomen and I forget what else...So family was only able to see him for a few short minutes here and there....
4-7-09
My mom and I went down to see Mike today. I was told he had an active morning - moving his legs and arms about. He was asleep for most of the time that we there - waking only when he had to cough up the Flem. Mom helped with the suction tube, when he had to cough - and no nurse was available...I know he knew we were there. I talked with two different doctors before we left. I started to cry, when I was told that the disease specialist, was not happy with the results from the lumbar test yesterday - the numbers had only decreased slightly. This was not the news I was expecting to hear. They are going to start a fourth medicine and increase the amphoterisan dosage - if I understood them correctly...They also took a culture and should have the results of that in a day or two...Hopefully those results will be good, other wise - the next step in treatment is going to be something that is rarely done - infusing the meds. into his spinal cord. My Mike has been to through much already!!! Please lord, I know you have a purpose...But please don't put Mike through this!!!
4-8-09
No change this morning, with the exception that Mike is running a temp. An almost on going thing since he has been sick...He still is not responsive, sleeping most of the time. I don't understand, he was doing so well when the kids and I visited him last week. This mental roller coaster ride is wearing me out...
9:11 P.M.
The nurse held the phone to Mikes' ear, I told my husband how much I love him - and how much the kids loved him...I gave him kisses - nothing back. I asked the nurse if he responded at all to my voice - NOTHING. I HATE THIS TERRIBLE, ROTTEN DISEASE - TORTURE - FOR MY MIKE, for all of us...
4-11-09
No changes at all for the last three days. Mike is still asleep most of the time, only to awaken briefly when they turn him every two hours, or to suction the flem from his lungs. I try to speak to him over the phone at least three times a day...I hear him breathing...
I asked for one of the doctors to call me yesterday, but didnt get a call. Today I finally recieved a call, from Dr. ----. I wanted to know why Mike has been sleeping so much - was it because of the new medication??That is not the case, he is not even on any sedatives right now. He is asleep so much I was told, because the desease has not declined much at all, since the fifth lumbar punctar. I asked how many different meds. he is on now. I stopped counting after ten. The desease specialist for the Milwaukee erea, is trying to get ahold of the big honcho - the top desease specialist in the U.S. Dear God.
4-12-09
9:49 P.M.
I just said goodnight to Mike - I love you honey, please hang in there and stay strong - like the strong man I know that you are...
4-13-09
Mike had yet another lumbar punctar today. ( His seventh? ) When I said goodnight to him tonight, the nurse told me that his eyes were moving ( closed though. ) I will take any bit of hope that is thrown my way. I love you so much sweetheart.
4-14-09
Not a good day today - but then - that is a crazy statement... Our lives have been totally dumped upside down, why? Why is my husband going through this? He was always there to help ANYONE who needed help. He didnt care who, he was there for them. He didnt even ask friendship in return - but that sure would have been nice. One of the desease specialists called me, I happened to be at work at the time. The results from Mike's latest lumbar punctar were not incouraging. The cryptococcas has not gotten any worse, but it hasnt declined any eather... I was told that the treatments are failing and Dr. ----- wants to try something that has been mentioned to me a couple of times in the past weeks. Basically, they want to have the antifungal medicine administered into his brain. Good lord. It has been done before with success I was assured, but not something they jump into doing. Simply because of the fact that is not good having something foren in one's brain. Later, another one of Mike's doctors called me. He spoke to me for a good long time. He told me that with Mike's heart not doing well lately, he wanted me to think about something. He wanted to know what they should do - if Mike's heart fails. Do I want him revived? If this would happen, they can not gaurintee the qualitee of life that he would have. I cryed. I cryed so much today at work. I called my stepson Mikey and asked him to come over tomorrow night. I cant make this ungodly desision on my own, the kids and I will talk and decide. I know what my Mike would want done, that is what is tearing me up...I am so mentally exausted. I just dont understand.
4-15-09
Today was a better day. The desease specialist called me and said that she had finally gotten ahold of the top desease specialist for the U.S. ( US - - Centers for Disease Control and Prevention (CDC) ) He is in his seventy's and has seen many, many cases of meninigitis over the years. He recommended not to do the infusion of meds. into the brain. He had some other alternatives. THANK YOU GOD!!! They have now added another medicine and increased the dosages of the others. The risk of one of the meds. is that he could have problems with his kidneys...But if that would happen, they could alwalys do dialisis or a transplant...Mike was a little more alert today. They had his country music playing and one of the nurses was dancing around in his room and Mike got a goofy grin on his face! Me and Mikey will see you tomorrow sweetheart...
4-16-09
Mikey and I had an encouraging vistit with Mike today. It took him about fourty five minutes or so to come around, but when he did, he was awake for most of our visit! He smiled a big grin, a couple different times at things Mikey told him. And he finally puckered his lips again, so that I could give him a kiss! I had to turn my head so he wouldnt see the tears of happiness. He puckered for me two more times, not very much but I know he was trying. Just before we were getting ready to say our good byes, the lung specialist came into the room and knocked us to our knees. Right in front of my poor husband, who has always been SUCH A PROUD MAN, he went on and on about if Mikes heart should stop, he does not think we should have him revived. ( Then said how this was only his oppinion. YOU MORON!!! ) Next he mentioned how he has been seeing my Mike for seven weeks now and that he has not shown any signs of improvement. ( EXUSE ME - YOUR TALKING IN FRONT OF MY HUSBAND HERE, HE MAY NOT BE ABLE TO TALK, BUT HE CAN CERTAINLY HEAR YOU IDIOT!!! ) That is what I would have said, had I not been so shocked. Picture his son and I - with that wide eyed "deer in the headlights" look... What does he expect, he see's husband MAYBE once a day for a few minutes, does he think my husband is going to respond to his lovely bedside manner??? I think NOT. But Mike certainly responded to Mikey and I so I know he must be getting better!! The new med. and the increased dosages of the others are already helping my Mike. I know they are. I reported this Doctor and also requested a different lung specialist if possible. I hope he never hurts any other patients or family with his horrible bedside manner...
4-17-09
I talked to Mike this morning and noon as usuall and will call to say goodnight after I get done with this update...Tommy and Mikey were here today to help with stuff around here. Tommy brought his rototiller ( his lawn mower and trailer are also here ) so that we can get my Mike's garden started. He will have his garden here when he gets home and I know he will be so happy! I love you sweetheart.
4-18-09
After I talked to Mike this morning, the nurse told me that he was trying to pucker his lips for me - when I kissed him over the phone and had asked for one in return. She also said he appeared to be trying to say something to me. He was awake for most of the day again. GOOD JOB HONEY! I tell him every time I talk to him - how proud I am of him and how much better he is getting. He is such a fighter, I love you honey, sweet dreams...
4-19-09
The Passy-Muir Speaking Valve was put on Mikes trach tube today and the therapist tried working with him to talk. They didnt get any co-opperation from him, so decided to try another day. Physical therapists were in to work with him as well, but also, no co-opperation...I am going down to see my husband tomorrow and will ask for therapists to come and work with him while I am there. I just know he will respond. I will talk to you tonight at 10:00 to say goodnight sweetheart, would love to talk sooner, but your nurse is very busy, so that is the time we have set up. I love you so much my Mike.
4-20-09
Mike's mom ( Ma ) and Tommy came down with me today to visit Mike. ( Tommy wont meet Mike until he is much better though, just came along for support. ) We had such a nice visit with Mike! I asked for the speach therapist to come in while we there. What a pleasent gal. I kept teasing Mike that he prefurs his pretty nurses and therapists over me and so no wonder he is always smiling at them! And yes, then he smiled. Speech, physical and occupational therapy are all getting on the ball and working with Mike this week. YES!! It's about time honey - their gonna where you out - but you work with them, we want you home already!!! I brought along Mike's little dog Scoobie, pets are allowed in the hospital, but not with people like my Mike, who have MRSA...I spoke with his nurse about sneeking in Scoobie - ( he is only six pounds ). She said basically "out of sight - out of mind." Your way to cool lady... So Tommy stuffed Scoobie into his coat and was waiting in the waiting room. Tommy asked me if I wanted to take some pictures, I said sure, so he showed me how to use his camera. We got some pictures of today's visit. Thank you Tommy, you are such a godsend to me and my Mike~
4-21-09
Therapists were all busy with Mike today. Speech therapy put on the Passy Muir Valve, pointed to a picture of me and asked who I was. He said "Lori." The first time he has been able to speak in weeks, I wonder how that felt for him...I wish I could have been there to hear him. I wish I could be there now.
4-22-09
I was able to speak to Mike only twice so far today. I will call you tonight before I get some shut eye sweetheart. I love you.
4-23-09
The world wide web can be a wonderful thing. But it can also really hurt people...I have read some upsetting stuff in the last few days...I have so much on my plate, I dont need to hear the things I have read... So with out going into detail, I just want to say - that I know better THEN ANYONE - what my husband is going through. I drive down to visit him at least once a week, more
when I can. I call the hospital every day, at least six times if not more, and try to talk to him as much as I can. I want to get his garden started for him, even if I dont know what THE H---I am doing. My Mike will not see his garden this year - I am pretty sure of that - but I have to try and stay possitive for Mike and for me...It will be therapy for me and will give me and my Mike something to talk about once he starts to get better. ( Why do I feel the need to oppologize?? ) You know who you are, I hope you are happy with your self for making my torment even worse...is that even possible??! Get a life and Shame on you.
P.S...It was so nice as always "talking to you tonight honey..." I could tell you were really trying to speak to me over the phone. I know it is so hard for you sweet heart, but I am here for you. I LOVE YOU MY MIKE. I AM HERE FOR YOU AND ALWAYS WILL BE, I LOVE YOU SO MUCH. Sweet dreams sweetheart.
4-24-09
Awesome, awesome news! Mike's speach therapist called me this morning ( she is the one who took the pictures above. ) They had Mike sitting up in a reclyner this morning for a good hour! And he was talking a bit, apparently he thought one of the nurses was Kellie ( his daughter ) and kept saying Kellie's name. He even had some applesauce - his first of food in in I dont know how long. Weeks for sure, or over a month? I am so proud of you honey! Mike is zonked out big time after his busy morning, I will call you later sweetheart. I love you!
4-26-09
Mikey and I visited with my Mike today...Mike was awake but not very co-operative...He did know that it was Mikey and me, but he was just so lathargic. As always, I asked for all of the therapists to come by, while I was there. Mike responds so much better, when I am there, or any family members for that matter... I have had much better visits with Mike, then today - but much worse as well...I will continue to try and stay possitive. I did hear Mike say one thing... OUCH. The speech therapist was brushing his teeth, and My Mike doesnt have many teeth...So the brushing hurt his gums I am sure. The first thing I have heard come out of his mouth in weeks...or monthes?? I love you sweetheart.
4-28- 29-09
Mikes mom, dad, sister Debbie and brother Steve ( of course Steve, he has been taking every one down, every week, since Mike has been in the hospital...Thank you Steve. ) went down to see Mike today. He was asleep the whole time...Tommy told me that is bull shi--. He said they were probably keeping my Mike sedated, so that he wouldnt pull out his I'V's again, like he did the other day. My husband cant get better, if he is sleeping all day, the therapists come in and cant work with him because he is asleep... I called the hospital right away after Tommy told me that - he should know better then anyone. I told them in know uncertain terms that I DO NOT WANT MY HUSBAND SEDATED. The nurses are NOT GOING TO BE USING THAT AS A BABYSITTING MEASURE ANY MORE. I made that clear, and will remind them of that everday, from now on, when I call. After my phone call, Mike was taken off of both sedatives, and today he was more alert. Therapists were able to get him up and sitting in a chair and fussed with other stuff with him. When I called and talked to him earlyer, I was giving him smooches like we use to do over the phone...And of course asking for them back. When his nurse got back on the phone, I asked her if was puckering his lips. She said yes he was and she was wondering why! I told her why and I was so happy, he is better agian already after being takin off those sedatives...THANK YOU ANGEL.
4-30-9
I tilled part of your garden by hand today Mike, cuz I dont know how to use your rototiller and even if I did, I am sure I wouldnt be strong enough to use it. So anyway, I got in your onions, radishes, lettuce, peas -
and spinach and carrots for me. ( Well the carrots - if they come up that is - will probably be for the horses...
) I tried to get the rows nice and strait the way you like them. SHEESH, what hard work and I only planted five rows of things I think. But I also cleaned out the pond, weeded all my flower beds, cleaned out Nakota's paddock, and what all else I dont remember. Half ziemers is setting in...I love you my Mike
) I tried to get the rows nice and strait the way you like them. SHEESH, what hard work and I only planted five rows of things I think. But I also cleaned out the pond, weeded all my flower beds, cleaned out Nakota's paddock, and what all else I dont remember. Half ziemers is setting in...I love you my Mike 5-1-09
I heard my husbands voice tonight! For the first time in weeks and weeks and weeks!!! OH MY GOD, I had to hold the phone away, so that he wouldnt hear me cry....What a wonderful thing - to hear my husband say a few words to me, sweet music to my ears. I talked to my Mike a good five minutes or so, before I could finally get him to talk to me. I got him to say "I love you" and "yes" when I asked him if he wanted me to tell his family how much he loves them, and finally "goodbye. " GOOD JOB SWEETHEART!!! I LOVE YOU SO VERY MUCH!!!
5-5-09
Me, Mikes mom and Mikes sister BillieJo, went down to see Mike today. BillieJo and Ma rode together, I rode with Tommy. He had family and friends to visit in Milwaukee, while I visited with my Mike. I was also able to visit Mike longer, because Ma and BillieJo had to get back up to GreenBay, to visit one of Ma's sister's, who is also in the hospital. We had such a great visit with Mike, he talked non-stop for a good hour and a half I bet!! Every thing that was coming through his mind he was saying, some of it inappropriate, but that's bound to happen. It was so good to see him talking and smiling!! I asked therapy to come by to work with him while we there. ( As I always do. ) They got Mike up off the bed and walking a bit. He said he wanted to hug his wife, ( that would be me - hah hah!! ) and so the two therapists steadied him as he stood, and we hugged! He also hugged his mom and his sister BillieJo. How wonderful! They then helped to walk him over to the easy chair and sit down, then did exercises with him. He did so well and even joked a bit by doing way more repititions then the therapist asked him to do, that's my Mike! After Mike's mom and sister left, Scoobie and I just sat by Mike's side and visited. He told me a couple of times how hungry he was and that he would like two hamburgers with katchup and mustard and "was the kitchen open?" and " could I order them for him??" I tried to dance around his questions, because there was no way he was going to have that kind of food, he hasent eaten food by mouth in monthes and has to learn how to swallow and every thing else - all over again. The exelent knews of the day was - is that his "swallowing evaluation" which was done just before I got there - turned out good. So tonight my Mike will have his first meal in over monthes! Enjoy sweetheart!
5-6-09
Mike had breakfast, but wasnt to interested...he never was a morning eater...He ate well for lunch and also well for supper tonight. EXELENT JOB HONEY!!!
5-7-09
When I talked to Mike this morning he was talking up a storm again! :) He wanted me ''to tell them that they should untie him...he told me he would not pull at stuff..." Well later in the day they did leave the restraints off and for the rest of the day and he didnt try yanking the iv's out. ( I can hardly believe it. ) He also was taken up to the fourth floor to the therapy room and really did great. It must have been wonderful for him to get out of that tiny room, which I am sure must seem like a prison cell to him. I am so proud of all of your hard work Mike, you are getting better and are making great strides. I love you!
5-11-09
My husband had another lumbar punctar today, and even with trying so hard to document every thing here, I think I have lost track of how many he has had...The lumbar punctars are pushing two handfuls, I know that...I talked to my Mike a couple times already today of course, he is looking forward to his mom, dad, brother Steve and sister Billie Jo visiting tomorrow. He kept asking if I was coming to see him, and I tearfully had to explain that no sweetheart - I have to work, but I will come agian soon...and I call you every day and I LOVE YOU SO MUCH. Shame on you though for pulling out your trach tube today - you stubborn man!! Mike is getting so much strenght back - that those restraints are not doing much at all any more. He has ripped out IV'S, his breathing apperatis monthes ago and now his trach today, and of course has tried to pull out the catheter. They have their hands full once agian with my Mike. This is GOOD, it all meens he is getting better and so quickly now, compared to the last monthes upon monthes! I have been in contact with the social workers and I am hoping to have arrangements made soon, for my Mike to be able to come to a hospital or a nursing home - close to home - soon. It will be so wonderful, to be able to take a half hour drive, or even an hour drive to see my Mike. I will be able to do it every day...Talk to you soon sweetheart...
5-12-09
The results of yesterday's lumbar punctar are still encouraging, the numbers of the meningitis are still dropping, if even by only a little bit. My Mike still has namonia, they are treating that of course. When I talked to him earlier today, I told him that his garden is coming up. ( I have to admitt that I am amazed and yes - proud of myself. ) I could just HEAR the happiness and spark in his voice!! When I talked to him later on, he was asking "how long before I get there - to pick him up?" When I told him that I wouldnt be able to today, he said that I should have his mom and dad come and get him... Oh my Mike, hang in there honey, I am working on springing you out of that place and bringing you closer to home. It will happen before you know it, I love you Mike. I will never leave you, every thing will be ok!
5-13-09
I called so many times today to the hospital, as usuall, but I wasnt able to talk to my Mike untill about 6:30. tonight. He was so very confused and dissorianted... it does not help at all, with me and the rest of the family visiting - only once or twice a week... but we are all doing are best, concidering the distance...three hours one way is so hard... I need to get him closer to home already, he needs to have his family around him, he will get so much better - so much faster..... Tommy tells me, and he knows better then ANYONE. It so hard for me, to take care of everything around here, but I am doing it....Mike would tell me to quit my whineing already, he always did everything - so why cant I..... I am though ...with the help of a couple of a few close friends....Josh and Tommy. Thank you so much guys...I dont know what I would do with out you. Me and my Mike
5-15-09
I was up by five to feed the horses and Tommy picked me up by 6:30. Mike was so happy to see his kids. Kellie fed him his breakfast and lunch tray. You are such a good care taker and daddies giri! I asked for the doctors, thereapy and social workers to meet with me as soon as I had arrived. Which they did...I explained that there was NO REASON why my Mike could not be moved to a hospital closer to home - now that the meningitis seemed to be ( for lack of better words..."declining." ) After my three hour visit with my Mike, I left. Five or so miles down the road, I was talking with the doctors on my cell and they informed me that Mike would be being transported to the the hospital in GreenBay tonight!!! ( Where he had been monthes ago and where I had been hoping to have him return too. Only one hour away, verses three!!! ) They needed me to sign release papers...So around we went, back to the hospital. I was a nervous wreck, I could hardly sign the papers and I really felt like I was going to drop right there...Three different hospital personal asked if I was ok. I really wasnt...anxiouty, shock, happiness -- you name it.... I was experiancing it. For over four monthes I have been going weekly to visit my Mike. I could drive there and back blindfolded I swear. After signing the release papers, I was in such a mess, I could barely think strait and could not remember how to get out of the hospital... A pastor kindly showed me the way. They asked if I was driving...H--- no! Thanks Tommy for being there once again for me and my husband. If it wasnt for you and all of your advice, all of these monthes...well there is no telling where, or even what kind of ( worse ) mental state - my Mike would be in right now...
5-16-09
I talked to Mikes nurse this morning and she was very, very nice. When I called his room a few minutes later - he had answered the phone all by his self - a HUGE achievement as far as I am concerned...Something I am sure he would have been able to do monthes ago - had he not been RESTRAINED... I found out this morning that Mike will have a constant "sitter" in his room...though who will leave - when visotors arrive. How wonderful is that... When I think of my poor Mike being all alone, for the last four monthes, staring at those four walls and restrained....it makes me physically ill.... My self and Mikes parents ( with Mikes oldest brother Steve to help out, by driving them down ) did get down to see him every week - but you are still talking a total of only a six hour visit every week. Nothing, when compared to the hours upon hours, weeks upon weeks, monthes upon monthes that he has been imprissoned in the hospital...this is such a huge change, and so AWESOME FOR HIM. Love you sweetheart and you are really going to get sick of me now, your gonna see my ugly mug more then ever, I garantee you that. Love you so much sweety...
5-18-09
I had an awesome visit with my Mike today, he is doing so much better and talking up a storm. He asked me how long he had been sick, when I told him...his eyes got huge. He asked me if he was getting better and I told him "yes honey, your making huge strides!" He told me how he met the devil and God, and how they both wanted him to go with them...he knew to go with God and he and God flew through heaven really fast. But he wasnt ready to stay in heaven....
5-20-09
My Mike is making amazing progress since he has come back to Aurora, unbelievable!!! His mind is really clearing and he has his appatite back, along with getting stronger every day. ( He has also been moved up to a mechanical diet, verses the pureed. ) Therapy is working with him every day and today his trach is being removed!!! I asked him if he was exited about that and he said "well it is really no big deal. " The social worker called me yesterday and wanted to discuss discharging plans...After monthes of stalemates, every thing seems to be happening so fast now. I want to make sure that they dont push Mike out of the hospital though, untill it is safe for him to leave...I talked to the doctors today, inbetween my job at work...thank God for my wonderful boss Joanne, who nevers say's a word, with all of the time I have spent on the phone, these past monthes...
I had another nice visit with my Mike tonight, he is so sweet and loving and his understanding of his situation ( for lack of better words ) is unreal...I got him a soda and he has been having a craving for potato chips, since he has been able to eat again...So I got him a little bag of chips and he said how "they" will not let him have them...I told him not to worry, I would take of it. I told him to just make sure he sucked on the chips good, before swallowing. He still hid them under his bedding.... Tomorrow, if all goes well, my husband will be transported to a specialized nursing home in Shawano, for a therapy stay...He was dissapointed to learn that he was not coming strait home. But I assured him that at this rate, he will be home in no time and will be able to watch his garden grow. He said "then I can tell you what needs to be done and boss you around!! " That's right sweetheart~ any thing for you, any thing to get you back home, healthy and happy...
5-23-09
Sorry for the lack of updates...My Mike is now at " Manor Care" in Shawano - a specialized nursing facilaty...He has been there since 5-21-09 and is doing so awesome! I visited with my special myracle man tonight and just hated leaving him...I bought him his own cell phone today - so that he can now call his family and friends and ME ( LOL ). I showed him how to use it and had him call his kids and some other people for practice. He did very well and is so proud that he has his own phone now! 
I made sure to tell him - that if he forgets how to use it, just ask one of the cna's...they will be sure to help him. Every one loves my Mike, they all cater to him and he deserves it!! My very special myracle man!
I made sure to tell him - that if he forgets how to use it, just ask one of the cna's...they will be sure to help him. Every one loves my Mike, they all cater to him and he deserves it!! My very special myracle man!5-24-09
Tommy had to go to Shawano today to grocery shop for his son's graduation party. He picked me up and we went to see my Mike. ( I am tapped out until next payday and had no money for gas, so it was SO AWESOME for Tommy to offer to take me to see my Mike. ) Tommy and my Mike finally met after all these monthes and got along great! Mike wanted to go rumaging...I got a kick out of that - the old Mike hated rumage sales and would never stop for me, if I pointed one out. Tommy and a cna helped my Mike into the truck and we drove around town. Tommy asked my Mike if he wanted a burger and of course Mike said that would be nice. So Tommy gave me money to go into a fast food joint ( remember - I was broke. ) Tommy also bought Mike at least three Mountain Dew's, a real treat for my hubby. Mike was so happy to just be out and about, after monthes of being indoors. Tommy parked and took a walk so that my Mike and I could be alone to visit. My hubby said "he seems like a nice guy." I said "I told you so~" Tommy and my Mike talked about everything and my hubby was laughing and really having a good time. When we brought Mike back to Manor Care, Tommy sat out in his truck while I wheeled my hubby back inside. We visited for a awhile, just the two of us. One of the last things my Mike said was "maybe Tommy will go bow hunting with me..." They are going to be great friends, I am so relieved and greatful that my Mike and Tommy hit it off. My husband is getting better so quickly now, and he and Tommy will be great buds -What more could I ask for?? God is great and I am so fricken fortunate. Now to just get my Mike home, I LOVE YOU SWEETHEART....I LOVE U SO MUCH and I am so PROUD OF U!!!
5-25-09
My Mike had a wonderful day, lots of visotors and two different "outings!" My mom was there to visit him this morning and help him get dressed. Then his son, his girlfriend and our grand daughter stopped by to visit. They took Mike to the park and for a nice long ride. Mikey even stopped at Walmart so that he could wheel his dad in to look at cross bows. My Mike will not be strong enough to use a regular bow this year, if ever... Mikes sister Susie and her husband Francis stopped by to visit with Mike some time during the day also, that was nice of them. An old friend and his wife stopped by too...but Mike was gone with Mikey. Same thing when his daughter stopped by to see him....he was gone galavanting! I went to see my very special man after I was done with work and chores at home. We went for a ride of course and had such a nice visit. I fell asleep on his bed with him and Scoobie for a bit, I was so tired. Love you sweety!
5-27-09
I have been working so hard to get my Mike into the nursing home where I work and it almost happened...When I went to the office this afternoon, to see what was what... ( as Mike would always say... ) I could just tell by the look in her eyes, that my Mike was not coming here...I couldnt help it and I started to cry. Then I had to call and tell my husband the news, and I know he cryed too, after we hung up. The home where I work will exept him, they just want to know that he will only need a week or less of the introvenous treatments, and at this point, we dont know yet.. I went to see my Mike tonight, after work and chores. I brought him some grapes and cheese, a real treat for him, especially since he hates the food where he is at! All of my Mikes visotors have been bringing him food - every one knows he hates the nursing home food~ but the main thing is he is eating up a storm and has gained ten pounds to date!!! We had another awesome visit tonight...My Mike is a changed man, BIG TIME. I said to him "you know you are a different man honey? He said yes I know, it is because of God." He told me how Mikey acts like he has a new dad, then my Mike got tears in his eyes...I told him that it was ok, and I told him in a way - Mikey does have a new dad, and I have a new husband...And he knew that...he keeps telling me how God has a plan for him, and how he was so different before... a hard ass basically...My Mike met God twice, and he loves to tell about it, he is so different now, so humble, so in love with God. He even told me that he has no hate for anyone...My old Mike did have hate... I LOVE MY VERY SPECIAL MYRACLE MAN!! SO VERY MUCH, MORE THEN EVER~
5-29-09
First of all, Mikes very last IV treatment was administerd yesterday - a HUGE DEAL! After over four monthes of three treatments daily at around five grand a treatment...my Mike is DONE WITH THEM. This is awesome stuff, he will now only have to take oral meds for the meningitis...Tomorrow or the next day they will also be removing the pic line...This all meens that my Mike is that much closer to coming to Woodlands in Suring...( where I work. ) ONLY THREE MILES FROM HOME.
The last two days have been busy and trying to keep my Mike happy. I have had off of work, so was able to spend lots of time with him. Yesterday we spent the afternoon together and I took him out to lunch, wheel chair in tow. Then we went to the pet store ( gee, who's idea do you think that was? ) We had a lovely afternoon, what more can I say...My Mike is being treated like royalty at the facilaty where he is staying, they all seem to love and cater to him, I am so glad. ( One special lady comes to mind, her name is Mickey and I hope she doesnt mind me mentioning her name here... Thank you again Mickey for taking such good care of my Mike and I am sorry if I am spelling your name wrong... hugs, Lori ) Today Mikes mom went to visit him, I asked her to bring him back with her and drop him off here at home. He was so happy and got to see his garden and of course every thing else. He asked me if I missed how the place use to look and I told him yes, but I have been trying my best - to keep the place up for him. With the exeption of the long grass and the house needing to be vacumed...I really didnt think things looked bad around here...but then it has been most of the year that my Mike has not been home, I guess I forgot how really anel he can be!
His brother Steve came by, those two are like new brothers to each other, my Mike is so happy that Steve is there for him and really cares. Those two are becoming so close, after all these years, I am so happy for both of them. Thank you Steve for helping me with that couch today, I finally can see out of the back of the truck, and we have a nice couch in the house, all ready for my Mike when he comes home to stay!
His brother Steve came by, those two are like new brothers to each other, my Mike is so happy that Steve is there for him and really cares. Those two are becoming so close, after all these years, I am so happy for both of them. Thank you Steve for helping me with that couch today, I finally can see out of the back of the truck, and we have a nice couch in the house, all ready for my Mike when he comes home to stay! Oh and by the way...MIKE SAW HIS GARDEN TODAY, and I know he will be home SOON, with in the next week or two...any one want to bet? You will loose, my myracle man is coming home very, VERY SOON!!!
5-30-09
Mikey picked up his dad this morning and brought him home here. Mikey mowed the lawn and weed eated and saved me some money...thanks Mikey. Mike spent most of the day in the house, he gets cold really easily, so that's best that he was inside. Still, he had to be working...He is getting along pretty lickaty split with his walker now, but still unsteady on his feet. I was at work today so am only relating what my Mike told me about his day at home. He and Mikey fixed the vacuume and then Mike proceeded to vacuume two rooms. And yes, he fell. When I told my mother-in-law this, she said "what is wrong with him?!" I told her that he is her son and takes after her and that's what's wrong! Of course I told her this in a loving way. U REAP WHAT U SOW MA! 
6-02-09
Mike has visited home every day since Sat. He even attended a picnic at his mom and dad's on Sat. and was able to visit with family~ I slept over night with him at Manor Care Sunday night and we left in the morning after breakfast, to head back home for the day. My Mike is tooling around pretty darn good now with his walker, unbelievable! Later today I am attending a meeting at Manor Care to discuss discharging plans...Maybe he will be able to come to Woodlands where I work in Suring? A few more hours and I will be finding out...
10:45 P.M.
So happy that my Mike is making huge strides on his road to recovery...just wish peaple would at least call to visit with him now. His cell is 9205902621. We have had him home every day since Friday, but he is still getting depressed having to go back to the nursing home. If u cant visit him in Shawano, please at least call and talk with him, it would meen so much!! Lori
6-07-09
The last five days have been ....crazy, for lack of better words. Manor Care had to take my Mike to the E R in Shawano, he had a fever and diarea. I was in a panick and thinking " he we go agian..." Thankgod he was diagnosed with "only" a bowel infection, he is back on introvenious antibiotics for the next ten days. He has the treatments three times per day. I had off yesterday and today, so picked my Mike up both days and brought him home. I made sure to have him back in time for his treatments in the late afternoon. Tommy came by to visit my Mike yesterday~ while he was home here. He brought Mike a six pack of Mountain Dew ( his favorite soda ) and a deer hunting magazine....Mike was smileing so much, while he and Tommy visited, I was so happy and had to leave the room because I was starting to cry, happy tears...for my Mike. I know he is so happy to be with me, but he was REALLY HAPPY, to have a mans company, Tommy's company...After Tommy left, it saddened me, realising that after spending the whole day with my Mike, that his cell phone never even rang once...There are so many that could give him a call...but he never complains, my sweet myracle man. Today his friend Susan came to visit him here at home, Mike use to take care of her home and help her out. She loves my Mike, she is a big pain in his a--, but he loves her too...all family and friends make a difference and meen so much ...especially now. We stopped at Mike's mom and dad's today and his sister Bernie was there....THANK YOU SO MUCH BERNIE - YOU KNOW WHAT YOU DID, WE LOVE YOU AND NOT just because of what you did~
My Mike is eating like a pig and those are his words! He is starting to feel better, but even so, has to take his naps once home. I love you sweety and I so am proud of all of your hard work, you will be home soon, I PROMISE!!
6-09-09
My Mike was so understanding again tonight...when I asked if it would be ok...if I came tomorrow night after work. Even though he is only twenty five minutes or so away now, it still costs me fifteen bucks one way per trip. We are down to one vehicle and that is my Mikes truck. Which I love driving by the way, but it is a gas hog, and it doesnt help when I dont know what gear I am driving in...
Kellie went to Shawano yesterday to visit her dad, she took him out to eat at a buffett place...how cool is that? I know my Mike was so happy, especially to spend time with his "Kellbells", whom he hadnt seen in a long time...
Kellie went to Shawano yesterday to visit her dad, she took him out to eat at a buffett place...how cool is that? I know my Mike was so happy, especially to spend time with his "Kellbells", whom he hadnt seen in a long time...6-10-09
After work and chores, I went to vistit Mike. He was not happy that I arrived so late, but as always, I explained that I dont get done with work untill after 6:00...We went for a ride around town, then came back to Manor Care. My Mike is getting very depressed, he wants to come home, and I am going to do my best as always - to do what is best for my Mike.
Around 10:00 P.M. or so...
I paged Dr. Loomas, the desease specialalist for this erea, he got back in touch with me pretty much right away. I hadnt talked to him in monthes. I had questions about Mikes care...and when could I bring him home...He said there was no reason why I couldnt bring him home now. NOW!!! But I would have to check with Dr. -------- first. Which I will be doing in the morning ASAP!!! It was so wonderful talking to Dr. Loomas and I even talked to his wife, what a nice lady. She called me and Mike family and we have never even met! She invited Mike and I over for dinner when he is feeling up to it, how nice that?!
6-11-09
MY MIKE IS COMING HOME TODAY!!!!!!!!!!!!!!!! I can hardly believe it! My special myracle man is coming home!!!!!!!!!!!!!!!!!!!!!!!!
6-17-09
Mike did ok his first few days home, he was bound and determined to be doing things to help. My poor Mike can hardly get around with his walker, but he still managed to vacume one day and NOT WITH MY OK. I happened to be at work and his son was here with him, but he ( his son ) was outside mowing lawn...There was only one day that I was unable to have someone here with him, so far. I found out yesterday from our niebhor that on that day, my Mike was out on the lawn mower and ran into one of the yard decorations...Geepers creepers, how in the h-ll he even got out side is behond me....For the last few days he has been very sick, hardly able to make it to the porta potty, throwing up his meds, not being able to eat...I had a bowel movement sample taken to his doctor yesterday...I am sure he just has a reacurrance of the infection he had,while in the nursing home in Shawano...But still, that takes alot out of a person, as we all know. ( Especialy when we are healthy, which my Mike is not... ) I think as of yesterday, he is finally starting to feel a little better - he ate some jello and some fruit and had plenty of liquids yesterday...And he didnt seem to have quite as many bathroom episodes. My poor Mike, will this ever end for him??
6-18-09
On the phone all day again today, before I got to work, while at work, and after work. Good God man...My Mike has cedif again, I was ''hopeing" it was just a normal diareah episode. Not so...and then to learn that it is highly contagious...I should have known this, since he had this at the nursing home in Shawano...It so hard to keep up with all of this, unfrickin real...Tomorrow will be the THIRD DAY in a row, running to Oconto Falls for meds. for my Mike. Thanks to Kellie, she picked up the meds today, and thanks to Mikes mom, she will be able to pick them up tomorrow...It is so hard with my hours and every thing else that needs to be done around here...to do what needs to be done...But I am managing... thanks to a couple of family members and a few friends. God is looking out for me and my Mike.
6-19-09
My Mike was so totally confused today, it is so scary, his mom came to stay with him untill Tommy got here...Thanks to both of you, especially Tommy, who stayed for a good four hours...Ma was a big help to, but has her own life to take care of right now, scary stuff going on for my mother in law...And my own mother as well...she is having kidney issues...so many people to pray for...
11:17 P.M.
I paged doctor Loomans, ( Henry as I now call him ) and he called me right back. I explained every thing to him, my worrys ect. and he and his wife are coming here tomorrow, by noon. I have never met eather of them...And Henry is not my Mike's doctor...because of insurance reasons...but he is coming over to try and help. He will look at all the prescriptions ect...I am so THANKFUL AND RELIEVED! Even as I type this at this late hour...my Mike is in bed talking nonsense, I am so damned scared. My poor Mike, I am worried that I am not taking care of him properly...Maybe I should not have brought him home?? What am I doing wrong?? I am trying so hard to do every thing right for my Mike. If I thought things were hard before...that was nothing to how things are now that my Mike is home. I know I havent been praying enough Lord, I just dont have the time and I know that is not exeptable...please continue to be there for me and my Mike.
Midnight...
I had to call doctor Loomans back, Mike was getting worse with his halucanations... Henry said to take him in to Oconto Falls Hospital, he would call them and let them know Mike would be arriving, he set up every thing and filled them in as best he could. THANKYOU HENRY Kellie and I were unable to even get Mike out of bed, he was very combative, so - once agian, I called 911 and the ambulance and peramedics arrived to take my Mike to the hospital. AGAIN. I am a basket case, I feel like I am not doing the right things for my Mike.
6-20-09
My Mike is back on the introvenous amphoterisan treatment today. When I came in to his room I started crying all over agian. I am so sick and tired of crying, so sick and tired period.
If any one had a case of "feeling sorry for their self " - that would be me today." I was so looking forward to having this weekend off and being able to take care of and spend time with my Mike. Today was our eleventh anniversary, which I wouldnt even had realised...had it not been for getting a card from my inlaws. After the usual chores, I went to spend the afternoon with my Mike at the hospital. He slept most of the time I was there, so I just layed next to him on his bed. I fed him his supper...as much as I could get him to eat...My oldest and dearest friend said it best when I talked her today..."You are in an awake nightmare. " But this is not about me, it is all about my Mike, my sweet myracle man.
6-21-09
I was not able to visit my Mike today. I called a few times, he was always sleeping. I guess that is best, he is sleeping, resting, and doesnt realise he is back in the hospital....His son Mikey did visit him, thanks Mikey, your dad loves you very much...My Mike was put back on the feeding tube supplements today, at my suggestion. He is still be offered three meals per day as well. But he is having big time issues with his mouth now. He can hardly open his mouth to eat, I am addressing this to his doctor in the morning, I am sure it has to do with the poor quality of his teeth ect. especially after all these monthes. ( Thanks Bernie for the tip. )
6-22-09
My Mike sounded a tad better when I talked to him this morning. I talked to him again tonight, after getting home from work, he sounded better yet agian. Still having trouble talking, but making more sense. I wasnt able to talk to any doctors today, my hours make that difficult. I have off tomorrow though and will as usual...be spending more time on the phone then I wish.
Good news! Myt mother-in-laws surgery went well today and she is home safe and sound. Thank you God!! Now if only my mom's surgery tomorrow will go as well...Thank you Lord for all of your blessings so far...We love you...
6-23-09
I went to visit my Mike this afternoon, my very special myracle man. His new doctor told me over the phone...that my Mike's progress didnt look good. HOW DARE YOU TELL ME THIS SHI- OVER THE PHONE...What the fricken he...... What is it with the bedside manner of some these doctors!!! I called doctor Loomans, he made me feel better, of course. I almost stopped at their home on the way home...He is one awesome doctor, all these monthes keeping tabs on my Mike. He stopped to seem him again this morning. He has been doing alot to help my Mike and he is not even his doctor, because of insurance reasons...Dont know if I ever mentioned this...( And he never new my Mike before he got sick! ) All this year, he has been coaching Mikes doctors in his care ect. This man goes ABOVE AND BEHOND~
6-24-09
I found out today that my Mike has been diagnosed with another very rare disease. Basically it is an amume defieciency desease, so rare they dont know much about it. http://search.mywebsearch.com/mywebsearch/redirect.jhtml?qid=74c1b73b5c160340b9057b4128eaae9f&searchfor=idiopathic+cd4&action=pick&pn=1&si=&ptnrS=ZKxdm021YYUS&ss=sub&st=hp&cb=ZK&pg=GGmain&ord=0&tpr=&redirect=mPWsrdz9heamc8iHEhldEd22SD5orK42o8T3xuDzRhYaNWtIcPXuHCcEy5/Oao08f1l0CYef3VHWUjtjIQff4jKbgxr0I4juXQXzcQEcxOc=&ct=AR
The doctors figure this is why my Mike got fungal meningitis in the first place...The hospital he is at is talking about discharging him already - I cant bring him home, not until he gets stronger and can be left alone. I recieved yet more upsetting news today...The DON and social worker, at Woodland Village Nursing Home where I work, told me my Mike will not be able to come there, at least until he is better...They feel he is to much of a handful, with all of his "one step forward and two steps back." I know they didnt want to tell me this news. I am very hopeful though that Mike will be able to go back to Manor Care in Shawano. They all loved him there and they are a specialalized nursing facilaty after all. That will be the best place for my special myracle man...For now. My moms exploratory surgery yesterday went well. But she had some other issues and they would not let her leave today. She is hoping to come home tomorrow...Thankyou for all of your blessings Lord.
6-25-09
Where do I start....I called the hospital today from work, to check on my Mike. They said his white blood cell count was down and he needed a transfusion, but he refused. I flew off the handle...I told the nurse that I am his legal gardian...he is not capable of making desicions for himself...She said " well can you bring in the paper work so we can make copy's?" I went balistic and told her I had brought in the paper work the other day, the nurses station made copy's - YOU HAVE THE PAPER WORK!!! TALK ABOUT LACK OF COMMUNICATION. I have never liked this hospital...I told her that if my husband needed this done, to have it done asap. Good God man...This phone communication all went on while I was at work... OF COURSE. This is not the end of my day today - by any meens. I got a call from my mom, who has been in the hospital for the last three days...she had to have exploratory surgury...They said she would be able to go home the next day...She is still there. I found out today why...I had posted the link here...mom asked me to remove it. Of course with respect to her, I did. I always ask EVERY ONE for their permission to post pictures, ect...But neglected to ask my mom for her permission...SORRY MOM. I cryed so much today at work, what the hell man...I came home for break as usual, to let the dogs out ect. I got my change of clothes, so that I could leave strait from my shift, to go and visit my Mike. I was able to get him to eat about half of his mashed potatoes. But then he started complaing of a stomach ache. I went to the nurses station at least four different times in the three hours I was there. The nurse finally came and did all kinds of tests. I told her right away my Mike had a fever, she did a temp. in his mouth "ok" later did a temp. under his arm pit. Fever...I knew he had one by just putting my hand to his head!!!!!!!!!!!! I dont know what to think any more, I know God has a plan for all of us...but this year has been hell, this last week even worse, if that is even possible. My Mike is so depressed, I asked for them to put him on a low dose of antidepressents. I hate for him to be on yet another pill...but he needs help mentally. I am starting to get really afraid. My Mike is so weak and so depressed, it seems like he is giving up. My Mike does not deserve this, why is this happening...I LOVE YOU SO MUCH MY MIKE.
6-26-09
I found out today that my Mike is being discharged tomorrow around ten or so. Woodlands transport service will be picking him up and transporting him to Shawano. He called me tonight and sounded so good and so happy...I knew why. The hospital staff told him he would be coming home tomorrow...what the hell. You dont lie to people...I work in a nursing home and KNOW BETTER. I went to see him tonight and brought along a few sets of clothes, his shoes and his hat. He is all set to go tomorrow. I love you honey, Shawano isnt that far away and they will take could care of you. They will help you to get better and stronger - so you can come home FOR GOOD.I love you so much my special myracle man!
6-28-09
My Mike is not happy and of course lonely...His cell phone is dead...with all of his being shifted around, I ended up with his cell phone charger here at home...So he has not been able to make any calls or recieve any...I called Manor Care again today and asked them to take a portable phone down to my Mikes room, so that I could talk to him. He wanted me to come to visit in the worst way, and I wanted to be able to go and visit him as well - in the WORST WAY. I just have so much to do around here, there are not enough hours in the day...I will come tomorrow night sweetheart, I PROMISE.
6-29-09
Kellie and l left strait from work tonight, to go and visit Mike. We had a nice visit, Kellie clipped her dad's toenails...I rubbed lotion on his dry skin. He has the same room as last time, all to himself. He was in ok spirits, but almost seemed resigned to being where he is...Still confused at times, but then at other moments, really with it...It is so sad, I am so sad...I will be able to come and visit you tomorrow my Mike...
6-30-09
I spent about three hours this afternoon with my sweet Mike. It really hurts me to see him being so resigned - for lack of better words...at "living at the nursing home." I cleaned up his room and then went to a fast food joint to get him a cheeseburger, fries and drink. Anything for my Mike~ I love you sweetheart, I hate leaving you...dont worry my Mike. I will never leave you...EVER
7-04-09
I could not sleep the other night ( what else is new ) so at 11:30 P.M. Scoobie and I left for Shawano. I didnt tell my Mike I was coming, I figured he would be sleeping. When I walked in his room, I was so glad that I had came. He was wide awake staring at the cieling...I layed with him until morning, then had to say goodbye once again. Chores to do before work...I love you my special myracle man.
After work today and after chores tonight, all I wanted to do was lay down and sleep. But I had promised my Mike that I would come to spend the night with him. When I got there around nine-ish, one of the cna's ( Mickey ) told me he was sitting on the edge of his bed, looking out the window, watching for me at 3:00 P.M. already. I talked to my Mike at least half a dozen times today and let him know I wouldnt be able to come until tonight...My poor special myracle man, I love you honey.
7-08-09
I am so happy to report that my special man has made awesome strides and I KNOW A BIG PART OF IT IS - BECAUSE HE HAS HAD FAMILY VISITING EVERY DAY...He is so happy and cheerful now and making great progress...Thanks every one, just an hour or so out of your week or even out of your month, meens so much to my special myracle man and TO ME...
7-15-09
Two weekends ago...I thought I was going to loose my Mike, as did the doctors and nursing home personal...He was taken to the hospital twice in one weekend. I was - needless to say, a basket case. My Mike has been diagnosed with two more illnesses, believe it or not. The good news is that his new doctor of only a month or so, diagnosed and emediatly began treating the one illness. My Mike began making huge strides. With in hours he was able to talk so that we could understand him, and he started eating again. Since he has got back on the road to recovery - he has gained ten pounds in TWO WEEKS!! I brought him home for an over night stay the other evening and was that nice, for both of us. My heart melted as I watched my Mike tool around with his walker, looking at his yard, his garden, his animals...He told me how proud he was of me ( I am constantly telling him, how proud I am of him...) It was so nice to have my husband in bed with me, to snuggle with. My special myracle man...
Better news yet!! If all goes as planned, I will bringing my Mike home for good, this weekend!!! I have been of course, keeping in close contact with his doctors, therapists ect...and they all seem to agree that my Mike is ready to come home. He dresses himself now, gets him self to the bathroom, and is getting around with with his walker big time. None of this he could even attempt two weeks ago...And if for some reason my Mike cant come home for good just yet, I will still be bringing him home for an over nighter Sat. Tommy is having a get to gether at his place for the parade, and a cookout after words. My Mike desearves to be around friends and hopefull some family and to finally have some fun! It has been a long six monthes, a long year.
7-29-09
My Mike has been home now since now since the 16 and he is doing awesomely well!!! He gave up the walker right away and has been getting around with just a cane. He is eating three meals a day and as of today started taking his pills orally, all on his own. ( Other wise I had been crushing them, mixing them in water, and was administering them via the feeding tube in his tummy...) Tomorrow we have a doctors fallow up appointment and ofcourse have lots of questions for our doctor~
A friend of ours, actually a friend of my stepsons, is organizing a benifit for my Mike. She was here today and wow does she have big plans. She has done this for other people and all I have to say is YOU ROCK NICKY, THANK YOU SO VERY MUCH..............
1:30 P.M.
While I am at, I must say THANKYOU to every one who has been there for me and my Mike all of these monthes - all of this year. He wanted me to put this thankyou on here, and we will be taking it a step further, sending out thankyou's via snail mail, to all of the many people that have been supporting us, all of these monthes....So many, many people, hundreds actually....that we dont even know and never will...God is good and that is an understatement.
8-04-09
My Mike is more of a special myracle man then any of us WILL EVER KNOW...He continually tells of his relationship with His God and how they are best buds. I am glad, becuase that meens my Mike will be with me the rest of my life, to grow old with me. ( I sure hope God will let him stay with me anyway, my Mike is not so sure, all he knows is that he has a big job to do here, and he is not sure what...) He is truly a different person, for the better. Where before I had to keep him in line...now after over half a year - he will be keeping me in line and I am just fine with him and God on my side.
I LOVE YOU MY MIKE...
I love my special myracle man, SO, VERY, VERY, MUCH.
8-19-09
Mike didnt have one of his better days today. When I got home from work tonight, he told me his balance was off all day, and that he fell down twice...
11-17-09
Dr Loomans called Mike Lazarus...
Lazarus
Lazarus is a name found in two separate contexts in the New Testament. Lazarus of Bethany is the subject of a miracle recounted only in the Gospel of John,[1] in which Jesus restores him to life four days after his death. Another Lazarus appears as a character in Jesus' parable of Lazarus and Dives, or Lazarus and the Rich Man, recorded in the Gospel of Luke.[2]
The English variant of the name comes directly from the Latin, itself derived from the Greek Lazaros, which in turn came from the Aramaic Lazar. The ultimate origin is the Hebrew name Eleazar (אלעזר, Elʿāzār), meaning "God's assistance" or "God (has) helped".
11-17-09
The English variant of the name comes directly from the Latin, itself derived from the Greek Lazaros, which in turn came from the Aramaic Lazar. The ultimate origin is the Hebrew name Eleazar (אלעזר, Elʿāzār), meaning "God's assistance" or "God (has) helped".
11-17-09
My Mike has been having severe chest, arm pains for weeks now...I finally got him to agree to go in to see a doctor...
8-13-09
My Mikes benifit is this Saturday, we were at Nickey's tonight,. She is SUCH A GENEROUS GAL, we are so fortuate to have her in our lives, U ROCK LADY. I can never thank you enough for every thing you have been doing for my Mike and I...We are so looking forward to the benifit and being around family and friends, my Mike deserves this so much...THANK YOU NICKEY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
9-1-09
My Mikes feeding tube was finally removed after all these monthes! It has to be pretty awesome for him, no more tube hanging from his tummy...No sedatives though, and the doctor literally yanked it out...YIKES.....My Myracle Man is TOUGHER THEN NAILS~
9-4-09
My Mike spent the day depressed...I didnt know until I got home tonight after work. My poor miracle man was so depressed today, he had dreams last night, or flash backs rather, of being in the hospitals.Things he didnt remember until he dreampt them...My special man feels useless and just did not have a good day. Kellie and I did our best to cheer him up tonight, our sweet Mike...We LOVE YOU SO MUCH HONEY!!!
10-19-09
Finally, Dr. Henry Loomans has an office just twenty miles from home here...I found out the details and made an appointment for my Mike today. I am so exited and RELIEVED. I will finally meet the doctor who was there BIG TIME FOR MY MIKE AND I THIS YEAR. NEVER GETTING PAID A PENNY, because of insurance reasons...Yet he took it upon himself, to be there for me and my husband. And old time doctor for sure, wonderful bedside manner ( from what my Mike recalls. :) Talk about a man who acts like the old time doctors of yester year, making bedside visits. ( Please remember...he was doing this all on his time and not getting a penny. I called him so many times in tears and feeling helpless. ) I cant wait to meet this man and his wife one day. We are looking forward to exepting their dinner invatation...WE ARE SO FORTUNATE.
10-20-09
Now if only my mom's recent major health issues will get resolved...This is a whole new nightmare, but out of respect to my mom, will not go into details. WE LOVE YOU MOM. I am so glad that you can be where you are, I just wish I could be there for you as well...
10-24-09
My Mikes appointment with Dr. Loomans went great, he was amazed at Mikes appearance and how far he has come. It was so AWESOME to finally meet this man, he helped me keep my sanity all those monthes Mike was hospitalized. He laughed and joked with Mike, when we left I gave him a big hug. He is now finally getting paid for being Mikes doctor. Dr. Loomans upon looking at my Mike and after talking to him for a bit...called him Lazaras.
Lazarus
From Wikipedia, the free encyclopedia
For other uses, see Lazarus (disambiguation).
Lazarus is a name found in two separate contexts in the New Testament. Lazarus of Bethany is the subject of a miracle recounted only in the Gospel of John,[1] in which Jesus restores him to life four days after his death. Another Lazarus appears as a character in Jesus' parable of Lazarus and Dives, or Lazarus and the Rich Man, recorded in the Gospel of Luke.[2]The English variant of the name comes directly from the Latin, itself derived from the Greek Lazaros, which in turn came from the Aramaic Lazar. The ultimate origin is the Hebrew name Eleazar (אלעזר, Elʿāzār), meaning "God's assistance" or "God (has) helped".
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