Saturday, March 12, 2011: Day 24

Saturday, March 12: Day +23

The best thing about the weekends here at Egleston? No doctor parade!! We can actually sleep in and that's exactly what we did.  I was up late writing and posting to Chase's blog until about 3:00 am, so I didn't actually get out of bed until well after noon.  Trust me, it's not like sleeping in at home.  There are still nurses, doctors, and others coming in and out of the room plus his pumps beeping, but overall last night was probably the best sleep I've gotten in a while.  

Chase woke up on his own not long after I did.  He was very bright-eyed for a change and asked me to turn on the TV almost immediately.  I was pleasantly surprised.  If he's showing interest in watching TV, that's yet another sign he's getting back to himself. 

Although he isn't eating solid food quite yet, he did attempt today to eat some yogurt for the first time and finished almost all of a small cup!  I was really thrilled, but was also praying he would keep it down.  That mucositis is still causing him to have an awful bronchitis-like cough and he is bringing up "gunk".  It is no where as severe as it was before, but the drainage can still make him sick.  So, when he tries to eat, he has to do so in very small amounts and slowly.

Rebecca is here today and doing her best to try and goad Chase.  It isn't working out too well though.  Yes, he's feeling better, but not enough to be snarky or poke back at her like I'm used to seeing between the two of them.  I have a feeling it won't be long though.

And a day with Chase wouldn't be the same if he didn't try to talk me out of walking or some other chore! He asked if he could just do his bed exercises.  No. So up we got with his walker and me pushing his pole.  He did 5 laps without resting though!! I was so proud of him.  His bones are still achy from the Neupogen stimulating his marrow, but hopefully that will pass in a few days since those doses are over.  I'm sure he would have walked further had it not been for that. 

Oh, and since it's Saturday, this is his CVL dressing change day.  His most favorite day of the week - not!  Rebecca is training a nurse to work on the BMT side, and she brought in the kit.  She asked him if he was ready to do it now.  I just waited for what I knew his response was going to be and I wasn't wrong.  He asked her what time it was and then said he's prefer to do it a little later.  She started laughing, then told him, "Rebecca said you would say that."  

I could tell he was less than thrilled with the idea of her doing his dressing change.  He is highly sensitive about this procedure probably more than anything other than having to get an IV put in.  After she left the room, we started doing his laps.  He muttered something about wanting Rebecca to do it.  I told him  he should ask. Well, while we were out, he ran into Rebecca and sure enough he did ask, referring to the nurse as "that other girl."   She hesitated, then told him if he could get his laps done quickly she'd do it. "Only for you Chase."

He completed those laps in no time, too!

I don't know if I have mentioned it yet or not, but Chase has these bumps all over his body, which appeared after he went through those really high fevers.  They are small, raised, and look almost like dew drops on his skin, but the doctors aren't calling them blisters although if they were lanced, some liquid would come out of them.   They haven't bothered him at all, but he also did not get a good look at them until Rebecca was changing his dressing.   They are on his neck and torso mainly, and he started picking at them. I wasn't in the room at the time but she ratted him out as I walked back in, telling me she warned him not to pick at them because he could open himself up to infection. He insisted he wasn't, but I made he put his shirt back on just to shield himself from the temptation.  That would be all we'd need is for him to get an infection because he's picking at his own bumps!

Oh, and she left Chase a little heart on his dressing when she changed it. I had to snap a pic since he's such a heart and flowers kind of guy (said with sarcasm). Had I thought about it, I would've suggested a flower or something. She's been trying to harass him for the past few days but he just hasn't felt up to getting back at her. If he's still here when she works her next shift, he may be more back to his normal self. 

As she left, he did brag to her that she couldn't write or draw anything "smart" on his door because she would have to rip down or erase what I have put up there. He seemed fairly smug about it, but she replied, "Oh, I have my ways." He didn't seem to believe her though. Her answer? "Post it notes."

Right at shift change tonight, Rebecca asked me if I still had the pictures of Chase's lips, which of course I do.  Amy, our nurse for tonight, did not see them when they were as bad as they were.  I really didn't think anything about the request.  I figured nurses may want to share things like what Chase has gone through since it was kind of uncommon.  

It turned out Amy has a brother who had AML and was transplanted here 5 years ago.  She had only been working here for 6 months and was newly graduated from nursing school when he was diagnosed.  Plus, she was his donor.  Rebecca had me show her the pictures of Chase's lips because her brother went through the same thing but worse.  The dead skin and clotted blood in his mouth started to block his airway and the oral surgeon had to cut it out.  Chase kind of cringed at that, thinking it would be painful, but she said since all of the skin was dead, he didn't feel it.  She was amazed at the pictures.  Her brother had taken some of his own mouth to "gross out" his friends.  She didn't have any with her tonight, but I hope she brings some in.  I would be very interested in seeing them. 

Everything was going really well up until Chase started getting warm around 6:45.  He spiked a fever again, but only 38.5, which is the minimal temperature.  I was still worried it would persist after the Tylenol wore off, but it didn't.  This spike was just like the one he had before where it comes in low and then goes away after the Tylenol.  Weird.

In spite of once this, he was still was feeling better than I would've expected, especially once the Tylenol took effect. He fought me on the bath, which wasn't unexpected though. He ended up getting a chair bath since he was shivering so much, but it is preferable to no bath at all. The bathroom is far warmer than the room itself, so we did his lotion in there and he didn't complain about it. Why we didn't start doing this from the beginning I don't know.

It was a good thing I was able to give him a good coat of it because his skin gets horribly dry very easily. Also, because of all these fevers those clear bumps give his skin a rough texture.  I don't know if the lotion helps or not but overall the texture improved afterward.

He thanked me afterward for letting him get the chair bath, and I thanked him for not being too terribly stubborn. After he was dressed and back in his bed, he wanted to watch a movie.  I didn't have anything in the room he was interested in watching, so I logged into Netflix and we found a couple of Adam Sandler movies he hasn't seen.   The first was over at about 12:30. He insisted on watching another, so we were up until around 3:45 am.  I swore I wasn't going to let him stay up to watch the second one, but before I knew it the movie was over.

Overall, I am very happy to see Chase's progress.  The fevers are disappointing because it further delays his discharge, but I can still see improvement, which is the most important thing of all!

Thank you for all the prayers and support!!  He's on the path leading out of here.

- God Bless :)