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...................

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.

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.

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.

Shaking

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..........

Update

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.

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.