positives for my hospital stay

So I spent the last week or so in the icu at HCMC. I didnt really expect to enjoy my stay, yet there were definate pluses to it.
1.Being naked- so while i did have a gown on i was totally going commando.  oh the joy of not being tied into clothes that don't fit or just being free  ...well you get the idea.  Just so you know Anne makes me wear clothes almost every day. But I think a little naked time is important for every one.  Just keep it private.
2. Catheter- Okay two big minuses. One for going in and one for coming out.  The positive is not having to get up and go to the bathroom. Not that I could actually get up.
3. Food- Let me say hospital food overall is tasteless and cold. However a big thumbs up to my dietician who put a vanilla shake for every meal. That and fresh strawberries with pudding really kept me going.
4.Pain meds- If the definition of an addict is someone who asks for pain meds when he just wants to sleep or when he doesn't want to be part of the conversation, then I am an addict. Big plus for pain meds especially the IV ones.

So I have to say thanks to all my friends and family.  I appreciate all the thoughts and prayers and also ensuring that my family was properly fed and watered.

Your reward is to not have to wipe my rear.  Unless you really want to. I have very little modesty left.  It's like being on a OB ward except I'm not giving birth.

Getting Worse Before Getting Better

I am so glad that I can report that Jon seems to be doing a little better this evening (Monday), after a bad night and morning. I'm afraid time is a haze. Did I let you know that the drain for his gallbladder worked beautifully? It immediately relieved his pain, and his white blood cell count is back to normal.

However, being in bed for days is doing a number on his respiratory system. He has had some crud in his lungs and he spent most of the day yesterday trying to cough and use suction to get it out. He was very uncomfortable and during most of this time he was using the BiPap (breathing) machine he uses at home. He didn't use the BiPap at all while he was up in his wheelchair for a few hours.

After I got back to the hospital last night (Sunday), Jon was still pretty uncomfortable and a bit distressed. Then at about 11:00 last night he had a significant event. His vitals crashed and he wasn't able to breathe. It was quite serious, but getting him on a hospital BiPap machine with a full face mask brought him around. 

He was quite uncomfortable all night and had a hard time getting used to that mask. This morning he tried using his own bipap machine again because it is much more comfortable. After not too long, he had another episode. This time all of the equipment was already in the room and he recovered quickly. 

The Drs really don't know why these episodes happened, but they are speculating that the crud in his lungs created a plug and prevented him from breathing. He has now been on the mask all day and is doing much better. His vital signs look better than they have looked in days, and he isn't coughing like he was before. I don't know if the crud is going away, or if he just isn't getting it up, but he really does seem a lot better this evening. They are still hearing decreased breathing activity on his right side.

The real concern is that if he can't get rid of the crud in his lungs on his own, eventually they will have to intubate him to help him breathe and suction his lungs. I've spoken to the attending pulmonologist as well as the pulmonologist from the ALS clinic and they agree that even if they intubate him, he may be able to come of the ventilator with a little time. Our fear, of course, is that due to the ALS, once he goes on a ventilator he won't be able to come off. I was relieved to hear that might not be the case.

We are still praying that his lungs will clear, and this afternoon and evening seem promising.

** Note from Tuesday morning... The Drs were just in and really do believe he is on the mend! Over the next few days they will wean Jon back to his home BiPap machine, and hopefully he will even wean back to just using the machine at night. Very good news!!

Seriously?!?!?

Jon officially has the WORST luck when it comes to health issues. As it turns out, when you have ALS other normal medical problems don't stop. (This is from the email update I sent to family, so it may be more detailed than you are interested in! I decided not to edit, so this was his status as of Friday morning)

For the past few months, Jon has had intermittent stomach aches. They have lasted 2-3 hours and then he's been fine. He had a kidney stone a few weeks ago, and we assumed that explained the pain. He's had 2 more bouts of the pain since then.

Wednesday night he started hurting again. The pain was manageable through the night, but did continue into the morning. We still went to his ALS appointment, and he got increasingly uncomfortable throughout the day. They decided that they needed an internist to look at him, as the pain was clearly not ALS related so they made an appointment for him in urgent care. 

Around 2:00 the pain got intense, just as he was heading to urgent care. They were a bit slow, so I asked if the ER could deal with his pain better (imagine a lot of moaning and writhing...totally not Jon), and they did transfer him. After taking much too long getting the IV in, I asked them to just give him a shot in the meantime. They did and then got IV pain meds going as well. They diagnosed relatively quickly that he has sludge/stones/infection in his gallbladder...normal gallbladder problems for those who have them.

The trick is managing the gallbladder with the ALS. At the moment they are managing the pain meds with the fact that they depress his already weak diaphragm. So managing his pain is making his O2 fall. For now they seem to have found a good balance, but if his saturation drops below 90% consistently, they are discussing intubating him. The concern, of course, is that he would never come off. I will encourage them to let him feel a little more pain before that happens.

Surgery is scheduled for 2:00, but they are putting in a tube to drain the gallbladder, rather than remove it. I'm glad the surgeons (who of course know Jon) are being cautious. An otherwise healthy adult could handle simple complications, but again, they don't want Jon to end up on a ventilator already. The drain may actually solve the problem, but it will definitely make the surgery to remove the gallbladder safer if it is necessary in a few weeks. That and the antibiotics he is on to manage the infection.

When Jon had his feeding tube placed, recovery was definitely a little difficult for him. I am anticipating Jon being at the hospital through the weekend. Since he has a BiPap machine for breathing while he's laying down, they have him in the ICU, which I'm so grateful for. I think he is probably getting more attention because of that.

To be continued...