Transplant Day +12

Wednesday, February 5th

Avery was still pretty restless last night. We had to get up around 3am due to diarrhea, but luckily she went back to sleep pretty quickly. She slept until a little after 8am.

Her ANC was 2210 this morning. This was her 3rd consecutive day over 500, so she is officially considered engrafted. They gave her one last dose of Neupogen today, but they will stop it for the next few days to see what happens with her counts. They stopped the Gentamicin yesterday, the Vancomycin today, and plan to stop the Cefapime tomorrow since she has been fever free for 48hrs. Hopefully being off all of the antibiotics will help her stomach.

They are continuing with the twice a day Lasix , and her weight is down to 22.5kg. They will slowly wean her down to once a day and then off completely soon. We have been decreasing her Benadryl/Ativan drip a little each day for the past few days. They will continue to slowly wean her off and then just use "as needed" doses. Her morphine drip is still the same, but since she hasn't been requiring extra boluses, I suspect they will slowly start weaning her tomorrow. They increased her feeds to 10mL per hour today.

Her mouth is still pretty swollen, but the pain is much better. controlled She talked more today than she has in a while, but it was still pretty hard to understand her. She took another very long nap from about 11 to 4 today which she really needed.

Thiotepa tanned her from the inside out. You can see the contrast where her skin is fresh from having a dressing.

Today was the day to change her central line dressing. Her skin looked much better than it did last week although it is still pretty tender. As usual, we had to work hard to restrain her. She got so worked up that she vomited.

She perked up a little this evening. She and I did some Legos together., and she and Shon played a game on the iPad together. Although it was only for a few minutes, it did our hearts so much good for her to feel well enough to participate.

And then it all went to hell...

I got Avery up and ready for bath as usual. She started complaining of stomach pain. I was questioning whether she needed to vomit or poop when she started throwing up violently. In a split second she had thrown up her NG tube. The part that goes in her nose was still there(and taped to her face), but the part that goes in her stomach was sticking out her mouth. I was paralyzed in disbelief and disgust for about 2 seconds. My instincts finally kicked in, and I pulled the tube out of her nose and throat. We then had to take the new(extra adhesive) dressing off her fresh sensitive skin. She got her bath, and I got her in bed while we awaited the inevitable.

Two nurses and I held her down while a third nurse placed the tube again. She immediately threw it back up in her mouth. They had to pull it out and start again. We sat her up at a different angle and finally got the tube in and secured. Another chest x-ray showed that it was placed properly. I'm sure most already know, but an NG tube goes in one side of your nose and down your esophagus until the tip is in your stomach. No matter how old you are, I can't imagine placing it being any less traumatic.

I declined restarting her feeds tonight as I didn't want to risk a repeat event. We will discuss with the team tomorrow when/how to move forward.

Please continue to pray for:

- No more vomiting

- No more diarrhea

- Rest

- No issues weaning off medicines