Thursday, June 26, 2008

Home Again

Mike came home yesterday afternoon. So far so good. Of course, he seems to be coughing more than he did in the hospital, but then again, maybe that's a sign that the antibiotics are working?? His toe is still bandaged up, as I was told they took half the nail off. I wasn't given any special instructions on it's care, but hopefully our usual "visiting podiatrist" will be by in a few days to check it out. Mike will still be on the antiobiotic for another 7 days.

Last night he was very sleepy - could be the infection or just being "home". Who knows, hopefully he'll perk up. His back and bottom look HORRIBLE. The heat rash was SO unnecessary and it pains me when I look at it. Mike must be SO uncomfortable. We have the creams etc. to care for it, but I'm always concerned that the rash will open up, and another infection will occur. Beside the fact that it cannot be pleasant for Mike. He has been through hell and back and can never seem to get a break.

Beside all the upheaval at home, my office is moving. The last few days have been hectic and tomorrow we will be out of commission all day. Because of all the packing and dust, my allergies/sinus's are in full swing and I feel so sick. My head is congested, my nose running - I'M A MESS.

No rest for the weary...................

Tuesday, June 24, 2008

Not Home Yet

Sooooooooooooo, Mike is still in the hospital.

He was kept in yesterday because they had been waiting for the dermatologist to check the rash on his back. The doctor confirmed that it was in fact heat rash and gave me the required prescriptions of lotions. It still looks horrible, but we're taking more care in making sure his room REMAINS cool and that there's more sheets between him and the vinyl hospital mattress.

This morning something was done with his toe. I am hoping a podiatrist came in because as of last night, the nurse had absolutely no paperwork indicating that a podiatrist had looked at his toe. When I showed her that looked like someone had drained it, she said "it probably just opened up on it's own". All the more reason why I want a podiatrist to check it out. When Nathan got there this morning, he said it was bandaged up and it would only be coming off tomorrow. When I get there today (around 3:30) I will have to investigate as to what transpired.

While we are disappointed that Mike is not home, I am thankful that all this is being addressed while he's in the hospital, rather than having to run him to a doctor after he's home, or worse yet, back to the hospital. Everything happens for a reason, no matter how small or insignificant it seems.

Saturday, June 21, 2008

Energizer Bunny

Last night right before I left the hospital, I noticed that Mike's big toe was all red, swollen and green. I called the nurse in and she requested that the Resident come in. When I left, they had ordered a "podiatrist consult". This morning, the podiatrist had obviously been in because Mike's toe was cut open. Apparently, it was infected and they had to drain it. It appears the antibiotic he's on for the pneumonia is also good for soft tissue, so it will cover this toe infection.

After I tended to his toe, I went to give him a hug and noticed he was saturated in sweat. The air in his room had been shut off and he was hot. I requested the aid to change him and I helped her out. In doing so, I noticed a terrible rash on his back. It went down his side and even under his arm. The doctor prescribed hydrocortisone for "heat rash". If this is a heat rash, it's THE WORST rash I have ever seen. By the end of the night I requested that a dermotologist come in to check it out because it had gotten worse. It was so bad and so red, it almost looked purple. If it is a heat rash, maybe it's because someone turned the air off in his room. All totally unacceptable.

Once again, I feel so bad for Mike. Pneumonia, toe infection and heat rash. He's a mess, but in true Mike form, he's still smiling.

Friday, June 20, 2008

Give and Take

Throughout all the years of Mike's illness, I realize that it's been all about giving up one thing in order to get another.

Yesterday, Mike was moved to a different room. He's in a room by himself and there's plenty of room for all of us to visit. When he got into the room though, it took AN HOUR to get the nurse to come in - and that was after 3 requests. His room downstairs was near the nurses station and it very very noisy and busy. Alot of people were always around and we could always get someone to help us. In his new room, there's NO ONE around. It's almost like he's in a desserted part of the hospital. I had asked for the PCA's to get Mike out of his chair into the bed BEFORE they got busy with the food trays. After 1/2 hour and no one showing up, I decided to do it myself. I was just about to lift Mike in the hoyer when they came in. When they did come in, it was pathetic. They had NO IDEA how to use the hoyer. I had to show THEM. Mike's food try was delivered at 5:45 and when we left a little after 8pm, it was still in his room. No one had come back to take it away...In order to get a nicer room, we had to give up better care and more attentive aids/nurses. That wasn't a good trade off, but who knew. Hindsight is 20/20.

The last few days, I was upset/concerned about Mike's tremors/shakes. Three days later his neurologist called back and I had asked if they could give Mike something to "supplement" his other medication. When I got there yesterday, it was apparent that they had given him something. He was totally out of it. Instead of the 1/4 miligram the doctor said he would give, he gave 1/2. I wonder why and who knows if I will be able to reach him today to ask. Will that be a compromise we will have to make??? Will we have to deal with Mike shaking - OR - Mike being totally out of it? When he's out of it, he doesn't eat. Even though he was shaking those few days, at least he was eating. But then we take the chance of him choking if he has something in his mouth and he starts shaking....So the trade off was constant shaking with fear of him choking to heavily medicated with no chance of him eating.

This whole process has been giving up one thing for another. What makes it so hard, is that each thing to be considered is SO important. I am working with his neurologist on a combination of medicine that will let him be more awake, yet not shake so much.

Tuesday, June 17, 2008


Mike did well today..BUT he has had such bad tremors/shakes, that at time his arms almost hit the bed rails. He did NOT have these before he went into the hospital. They can be caused by a change in his medication (2 very strong antibiotics) or the infection itself. Whatever is causing it, needs to be addressed because Mike is basically non-stop all afternoon. He does not have the "one on one" this time, so I have no idea if he's like this at night. Is he sleeping OK or does he shake all night? He was breathing heavy again today but that's probably because he's been moving so much. His legs must hurt from the clots because he's also moving them. He was supposed to be put in the Geri Chair like he is at home, but he was not put in it today. They offered at 4pm, but that was too late for him. He's been eating/drinking so well that his nurse was even amazed.

A big problem we have this time is his room. Our "angel" Jean, in patient relations always tried to get him in a room by himself, mainly because he always has someone with him. This time it didn't happen and he has a roommate. That doesn't matter to us, but his side of the room is only about 10x5. In order to get next to his bed you have to "shimmy" by sideways. There's hardly any room for chairs. It's difficult to visit him and not a very easy situation. Now I know why the previous patient in this space always sat out in the hallway. I have NO IDEA how they plan on using the hoyer and geri chair in this room tomorrow. It's impossible at best.

I have a feeling the doctor will try to release Mike tomorrow. I know he knows that I like Mike to be at home. He should also know by now that I don't want to bring Mike home prematurely, and then have to bring him back AGAIN. If he does mention him going home, I will inidcate that I am not comfortable with that until the neurologist can figure out what's causing his tremors and how he can fix them. I want to bring Mike home when he's fully healed, not partially. It's not fair to him or to us.

The kids took their last final today and they are now finished for the summer. I went to a focus meeting at the JCC for their "Let's Do.." series for EOAD families. They are trying to get spouses together so we can go out to dinner once a month and for the kids to get together at their facility for pizza and swimming. It will be a way for us to get away from the stresses for a few hours. Sounds like a plan for me..........

Monday, June 16, 2008


In the ER yesterday I noticed that Mike would flinch each time I touched his left foot. I mentioned it to the Resident and she suggested that they take a sonogram to check for blot clots. Lo and behold, Mike has multiple blot clots in BOTH legs. So on top of dealing with the pneumonia, he has the pain of the blood clots. I can't stress enough how bad I feel for him. It seems to be one thing after another.

Today he was also shaking ALOT. I requested they call his neurologist because I was concerned he may have another "S". When he was in for the UTI they had to add another medication because between the fever and infection, it had a negative affect on the anti-"S" medication. While I don't want him to be sedated, I also don't want him to have another S". He was allowed to have liquids today and he did well. As usual, they were concerned that he would aspirate.

Tomorrow is another day.

Sunday, June 15, 2008

He's got pneumonia

We had to bring Mike back to the hospital last night. The week seemed to be going well, but yesterday, he was not himself. Around 8pm last night, he started breathing heavy and he had a low grade fever. My first thought was that the UTI came back. Courtney was concerned because he sounded like he did when his lung collapsed. We called an ambulance and we were on our way. By the time he got to the hospital, his fever was 104.1 and he was coughing. It seemed to come from nowhere. Of course, his chest x-ray showed something in his "lower left lung", the same spot that always shows a concern. But this time, they also saw something on the right side. He is really out of it, as expected.

I have no idea where this will all lead, but this "Energizer Bunny" of ours is a fighter. My heart breaks when I think of all that Mike has gone through throughout these years. There is ALWAYS someone by his side letting him know that he is not alone.

Courtney and I were up for 24 hours straight. My mom and Walter got up there around 7am to relieve us so that we could go home and sleep a while. We each got about 4 hours - not bad for 24 hour period :( I came home to take a shower, update this blog, make some calls and then I will be on my way back to the hospital.

As always, please send your prayers. Thank you.

Friday, June 13, 2008

Oh, Those Dimples

Mike is doing well. Last night he surprised us. Right before it was time to get him ready for bed, he lifted up his head when he heard Courtney talk and looked right at her. I was sitting on the other side and when he heard my voice, he turned his head to look at me. When my brother was going up to bed, I asked Mike to give him a smile, and he looked right at my brother. He had a REALLY good day yesterday, therefore, so did I. Now more than ever, his mood will definitely determine my state of mind.

The kids are winding down on their finals. Today was Courtney's toughest. She had a REALLY BAD history teacher this year and we all found it appropriate that her final was on Friday the 13th. Brandon seems to be taking his tests in stride, although at the beginning of the week, he was REALLY on edge. The teachers put so much pressure on them. Tuesday will be their last test and then they're off for the summer. They plan on working at their middle school camp again this year. They enjoyed it the last few years and getting paid was a bonus.

(Picture was taken today. Gotta love that smile.)

Wednesday, June 11, 2008

Slowing Down

Mike is doing "OK". He's eating and drinking, just not as much as he used to. I'm not sure if this is only temporary, or if he's just slowing down. Only time will tell. We can still get him to laugh, sometimes very strongly. We live to see his dimples. His smile could light up the room.

(This picture was taken tonight around 6:30 p.m. Gizmo climbs on Mike's lap and "stands guard". Very cute)

Tuesday, June 10, 2008

Mike is Home

We brought Mike home yesterday in 103 degree temperature. He seemed to do well, actually better than all of us :). Of course my main concern was hydration and he seemed to do OK. Although around 4-5pm, he seemed to be completely "out of it" again, just like when he was in the hospital. It took quite some time to get his medicine in him, but we did it. He went to bed a little earlier, but looked oh so comofrtable in his own bed all snuggled up. It was nice to have him back. He slept good through the night - I'm sure he didn't miss the hospital noise and interruptions. I will be waking him up in a few minutes and hopefully today will go well.

The kids have their finals this week and are on edge. Brandon had somewhat of a breakdown last night, Courtney's had her turn this morning. They take these tests VERY seriously and even though they each have an approx. 95 overall average, the still fear that they will bomb the tests. They put so much pressure on themselves. I will be happy for both of them when they finish their last test next Monday.

Sunday, June 8, 2008

Time Will Tell

We're at a standstill now and all we can do is wait and see.
At least three times that Mike had been hospitalized, it was actually said to us (or inferred) "this is the beginning of the end". While in the hospital, Mike has always been truly sick, his schedule was thrown off and he's not in his own environment.
Each time he would come home (especially after the comments we received), we expected the worst. Each time he came home though, he rallied and wound up being stronger than ever. He's our "Energizer Bunny".
We can only wonder when that rallying will stop. We've been told to expect the worst so many times, when will it actually happen?
Mike's eating has slowed down tremendously. Right now, I'm not sure it's enough for him to thrive. Mike's strict instructions to me right after he was diagnosed, was no feeding tubes of any kind. It was his decision. As difficult as it is for me, I KNOW it was what he wanted. We will continue to nourish him as much as we can and hope for the best. If all goes well tonight, Mike will be coming home tomorrow.

Could all this be a result of the UTI? Yes. Could it be the progression of the disease? Yes.
Only time will tell.

(This picture was taken today at the hospital while Mike was resting)

Friday, June 6, 2008

On his way

Mike seemed better yesterday. They followed my suggestion (will find out if it is good or bad) and are giving Mike his additional medication only at night. Because of this, Mike was MUCH more awake today. He ate half his breakfast, a little lunch and a little dinner. We are starting off slow, considering his stomach has been empty for so long. I don't want to overload him because of his stomach issues. He smiled and even tried to laugh a few times. When we left the hospital last night, I noticed that his left arm was swollen. He's had the IV in that location since Sunday and I think it became compromised. They shut off the IV and had called the special "IV Team" to try to find another vein for Mike. He always has the same problem after being on the hospital for a while. If they can't locate a vein, they will not be able to hydrate him or give him his one medication that is administered through IV. I will be calling this morning to find out what happened with that.

I pray that the infection is slowly going away and the medication is being given correctly. I hope that today will be as good as yesterday and that Mike is on his way to getting strong so that he can come home.

Thursday, June 5, 2008


Today is a better day. It took me until 5:30 last night to get a call back from Mike's neurologist, but after speaking to him, I can better understand his reasoning. I only wish I had known earlier exactly what had happened and what his feelings were.

After all the times Mike has been hospitalized, I am programmed, through experience, to think that all doctors etc. look at Mike with those sad eyes and think, "there's nothing we can do" or "why bother". I immediately think that's what they're thinking - only because it has actually been said to me on numerous occasions. So of course, when something happens like it did on Monday, I immediately think the doctors are giving up. That was not the case here and I feel better. I will not go into the lengthy explanation as to why his neurologist did what he did, but now I understand and it all makes sense. I hope to have Mike removed from this extra anti-seizure medication (at least one dose) today. Mike DID wake up a little yesterday and we actually got a big smile from him. THAT was all I needed to prove to myself that I am doing the right thing. It's just exhausting in trying to figure out everything with Mike (because he cannot express himself) and then on top of that to meet with professionals who just don't get it. Hopefully, we're back on track and all I can do is keep praying.

As a side note, today is my niece Kristin's 23rd birthday. I can't believe how time flies. She was the first - granddaughter/niece - and she has brought such joy into our lives. I remember her birth just as clearly as my own children's. She is also my Goddaughter and she is very special to me. I can remember some wonderful times that Mike and I took care of her and most of them put a HUGE smile on my face. She has a special place in Uncle Mike's heart and I wish her the best today and always!!!!!! Kristin, don't EVER change, you are VERY special. We love you and HAPPY BIRTHDAY.

Wednesday, June 4, 2008

And so we fight

I feel "beaten". I go through this stage with each hospitalization. I feel like I am fighting a losing battle with the doctors, nurses etc. I'm not sure if it's the rainy day here, but today is not a good day for me.

Mike slept ALL day and night yesterday. Apparently, the other night, after the "seizure-like activity", he was given yet another anti-seizure medication. Now he just sleeps. What EXACTLY happened the other night to warrant an additional medication? Can't the antibiotic he be one for the UTI be interferring with his anti-seizure medication? Could tremors be a side effect of the antibiotic? Could Mike be having these tremors because his body is fighting an infection? Why does the hospital rush to judgment and immediately sedate him?

I will be calling his neurologist today to ask all these questions. I have expressed my concern with him in the past about over-medicating Mike. His primary care physician even asked me today about feeding tubes. WHAT???? I need to stay focused and remember that these issues were raised with Mike 4 years ago!!!!! Last year he was given Last Rites. Mike has overcome all these problems in the past and that was because WE BELIEVE IN HIM. Had we given up and given in, each time all the so called "professionals" did, where would Mike be today?

And so we fight. Mike is still very strong. He still laughs, sometimes so hard that his arms and legs go flying and kicking. He has THE best dimples. He would fight for me, I KNOW that and I will do the same for him. I guess the "professionals" find it easier to throw up their hands and give up. We will not. I will not give up on Mike until I know it's his time to go. I will wait for his UTI to be completely treated so I can evaluate the "real" Mike, not the sick Mike. And I will continue to fight for him, no matter how hard it gets.

Tuesday, June 3, 2008


I called the hospital this morning, as usual, to talk to Nathan and see how Mike was doing. Nathan advised that Mike was "NPO" (this means "nothing by mouth"). He got the nurse on the phone for me and she told me that Mike had some "seizure-like tremors" last night and the doctor decided to do this as a precaution.

If I didn't give Mike food every time he "trembled", the guy would never eat. They are SO concerned with liability that I am crazed. Last week when we questioned them 2-3 times about the blood in Mike's urine, they couldn't be bothered. We were told it was "sediment" or that it happens sometimes when a catheter is in. That to me was much more serious, yet they blew us off. Last night he shook a little and today they won't let him eat. I don't get the logic there and I can't wait to go up to the hospital to talk to the Resident.

My heart breaks for Mike as I wonder just how much he knows. He's allowed to eat one day, not allowed the next. He did so well last night with his food that I was looking forward to him eating today. He needs to get stronger so he can come home. Just because he cannot communicate, doesn't mean he doesn't know. I hope he doesn't think we're starving him. I'm afraid once they finally let him eat, he won't remember how.

I hope he knows how much we love him and are fighting for him on a daily basis.

Stolen Moments

I guess if you've been reading my posts, you have been able to see how crazy things are when Mike is in the hospital. Tomorrow will be 2 weeks. Our schedule is hectic and we always seem to be re-arranging our schedule to make sure the kids have a ride back and forth to the hospital. We get home each night between 8-9pm and then we eat dinner. We may watch one of our favorite TV shows, and then we go to bed. We are all usually exhausted.

One of my favorite times of the day has been the mornings. Since Mike has been hospitalized, Brandon has been sleeping down here with me. The kids get up about 6am and start getting ready for school. They have breakfast, get changed and then they come back into the bedroom with me. For about 15-20 minutes each morning, I am lying in bed with my arms around my 16 and 15 year old. How many other parents can say they are blessed with special time like that - especially with teenagers? I know when Mike comes home, we will no longer have those "stolen moments", but for now, I savour each and every one of them. Our lives may not be "normal", but they are certainly special. I am truly blessed to have Courtney and Brandon in my life and I thank God for mornings like these.

Monday, June 2, 2008

And the answer is........UTI

Yesterday morning I got up at 6am, took a shower and got Courtney to her driving class by 8am. From there, I went straight to the hospital and met my brother and Walter (8:15). They stayed with Mike while I left to go to the special mass wherein Courtney was appointed to the first diocesan council. But first I had to leave at 9:30 to pick Courtney up from her driving class, and then we headed back home to pick up my mom and Brandon. At 10:15 we left to go out to Rockville Centre for the mass at St. Agnes Cathedral. The mass was televised on TeleCare and said by Bishop Murphy. It was beautiful. The mass ended around Noon and I took Brandon and my mother back home. I got back to the hospital around 1:00 and relieved my brother and Walter. They went back home. At 2:30 Walter, my mom and Brandon left to pick Courtney back up (she had to stay for lunch and their first meeting). When they got back, Courtney stopped home to change, Brandon was dropped off at his friend's house and then my mom, Walter and Courtney headed back up to the hospital. They got there about 4pm. What a morning............

Mike had been really out of it all weekend, not eating or drinking. I was concerned that after 3 days on an antibiotic, he was not getting better. Then around 3pm, the resident came in and gave me the news. Mike has a urinary track infection (UTI). Apparently, the bacteria he was tested postive for, is not killed by the antibiotic he was on, so last night he got his first dose of the new antiobotic. We hope that he begins to show improvement over the next couple of days. I have a feeling Mike has been suffering from this for the last few weeks. About 3 weeks ago, he had a low grade fever, then he had another one about a week later. The ironic thing about this is that we had mentioned seeing blood in his urine TWICE last week, and each nurse blew if off as something else. It was only after I mentioned it to Mike's primary doctor that he called in a urologist and tested his urine further. It took three days for the cultures to come back, but at least we have an answer.

I hate seeing Mike so out of it. We can get him to laugh a few times a day, but he just wants to sleep. The doctor said this is QUITE common for a UTI, so we'll see what happens after a few days on the new antibiotic.

Before I left, I also noticed a red line running up Mike's calf. Since he's prone to clots, I mentioned it to the nurse. He's already on heparin as a precaution and he has a filter in his groin to prevent any clots from travelling, so there's really nothing they can do. Just something else to watch.

I promised Mike again last night that I would continue to fight for him and be his voice for as long as I can. We knew there was something wrong with him, and as difficult as it was, we ignored the way the doctors and nurses blew us off. I was not giving up until I found out was was wrong. When the resident came in to give me the news, he seemed VERY different, almost humbled. I think he FINALLY got it. We didn't bring Mike into the hospital for nothing. We KNOW him and we knew there was a problem. We were right and they were wrong. It's a hard pill to swallow.

I finally headed back home around 8:30 pm. You would think my day would be done, right? Wrong. ....My lawn desperately needed to be cut, so there I was, at 8:45 pm cutting my lawn. Yes, I got strange looks, as I was still dressed up from Mass that morning, but it was the ONLY time I had. No one else was going to do it for me, and it had to get done. I did leave the backyard for now, maybe I will do that tonight. I was running out of daylight and at least it's hidden behind our fence. :(.