Transplant Day -2

Wednesday, January 22nd

Last night was another restless night. Avery fell asleep right after her 10pm bath, but I had to get her up at 12:30 and 2:30am due to diarrhea. No sooner than she was finally settled back in bed, we were up again for her 4am bath. She was up again at 9am battling diarrhea, and then it was time for her 10am bath. She continued to have issues with vomiting ad diarrhea most of the day. She has also still been randomly spiking fevers. They sent stool samples to test for Cdiff and 2 other viruses. They have also added an antifungal medication, Micafungin, to ensure all scenarios for the fevers and diarrhea are covered.

Her counts still haven't bottomed out yet, but you can tell they will soon. Mouth swelling and pain has started to increase. She will likely have full blown mucositis soon. We had to give her a small dose of morphine late this afternoon to give her some relief She has been exhausted all day, but too unconformable from her various issues to actually rest.

We finished her Thiotepa baths at 4pm(thank goodness)! Her poor skin under the NG dressing and line dressing was starting to break down some and bleed. This was due to the constant removal of the adhesive dressings. Although we used adhesive removers and re-positioned the dressings each time, her skin had just had enough. It pained us all to hear her crying in pain as they had to clean her broken skin with the sterilizing agents before placing the longer term dressing. Thankfully we are back to weekly dressing changes from now on!

Her feeds have been off since early Monday morning, but they very slowly started them back today. She'll be at 5mL per hour for 24hrs, and then we will discuss increasing some. This will help ensure that her gut still knows what to do when she gets off of the TPN. Due to the increase in vomiting today, I suspect we will increase her Benadryl/Ativan drip slightly tomorrow.

The bright spot of Avery's day was earning a big prize for completing her baths. Regardless of her objections and fighting, she deserved something special for enduring those baths. She loved her Unicorn Poopsie(that I scored on clearance at Target). She has already made he first slime and has plans to make more tomorrow.

Avery was sound asleep by 9pm. I am cautiously optimistic for a restful and uneventful night. Tomorrow is another planned Rest Day with Transplant planned for Friday.

Please continue to pray for:

- No more nausea or vomiting

- No more diarrhea

- No burns or skin irritation

- Protection of her liver and kidneys

- Pain control