Thursday, June 19, 2014

Day +19 & Day +20 Increasing counts & Imaginary Parasites

As far as pain goes, each day has been incrementally better for Ryan.  He hasn't had any Morphine or Oxycodone since yesterday morning and today he walked a little bit.  It was even his idea; he didn't have to be bribed or coaxed into it.

In addition, today was the first day that all three types of blood cells showed increases on his labs. Today's counts:

Platelets: 65,000
Hematocrit: 30.2
ANC: 1665

With his ANC being over 500 for several consecutive days, his ability to take pills, and the fact that he is able to eat and drink some, he would have met the criteria for hospital discharge this week, IF he didn't have acute GVHD. With the GVHD we are not going anywhere just yet. The steroids will continue for the next 9 days and then, if they think the GVHD is under control, they will start to wean him off. If it does not get under control, I have no idea how long we will be here. At a minimum, I think we probably have two more weeks inpatient.

However, I have been asked to get our housing arrangements in order because, at some point soon, they will probably start giving us "passes" for a few hours out of the hospital and we will need to have a non-public (germ and virus free) place to go.

Being that we do not live within 15-30 minutes of the hospital (I wish), we need to stay in Seattle. Luckily, some transplant apartments that are run by the Ronald McDonald House opened up and I was able to go select one. I am not sure why, but I was picturing in my mind that they would be kind of run down, outdated and smell bad.  I was surprised that it is actually a fairly new building (11 years old). Also, in the last few weeks, they have been in the process of updating the open units, so I was able to pick out a 2-bedroom with new flooring, paint, and all new furniture donated by Lazy Boy. I will be moving some of our stuff over there next week, which should also make our room at the hospital feel a little less crowded. And, my car will no longer look like a homeless person is living in it. It currently has folded clothes for both of us stacked along the back seat, and I have been keeping stuff like cases of bottled water, extra toys, even a small trampoline of Ryan's in the back. I go out to the parking lot occasionally and grab whatever we need.

With the discontinuation of the pain meds, I had hoped that some of Ryan's itching would stop. Not so. In fact, he is still taking regular doses of both oral and IV anti-itch meds.  He doesn't know it, but I am also putting Aveeno anti-itch lotion on him. When we first arrived, the hospital initially gave us Eucerine lotion. Ryan let me put it on him once, but he didn't like that it made his skin feel greasy. With the skin GVHD, the doctors recommend lotion so that it is not aggravated by dry skin. Ryan absolutely refused to even let me put the Aveeno lotion on a small test area, so I had to resort to tricking him. The hospital gives us little travel size bottles of Johnson & Johnson baby wash. I emptied one of them out and filled it with the Lotion. He sits on the shower seat while we first wash him with the baby wash. By then, he is so busy shivering and complaining about being cold, that I can quickly put the lotion on as if it were body wash.  I think he might be starting to catch on, because today he noticed that I didn't rinse it off and was complaining that he felt slimy.

Unfortunately, the anti-itch meds seem to be losing their effectiveness.  That, coupled with a serious bout of "roid rage" after tonight's steroids were administered, made for a pretty unpleasant evening. Ryan's behavior toward the nurses and CNA's was horrible. He wouldn't cooperate when they were trying to take vitals and he was making really rude comments.  It is so embarrassing when he gets that way. I feel like the worst parent ever with my out of control child.  However, the nurses keep telling me that they see it all the time with kids on steroids.  I haven't worked up the nerve yet to say "yeah, but isn't my kid the worst you have seen?.." I'm not sure I want to know the answer.

He had a really bad itching episode tonight and was really upset that he couldn't have anymore anti-itch meds because it was too soon after the last dose. He was rolling around in bed and screamed "I am so itchy! This room is full of parasites!!!" Thankfully, his Benedryl and Zofran kicked in shortly after that and made him tired enough to fall asleep.

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