Day 18+ -- Chugging along

So overall Sam continues to improve. More energy, strength, and spunk returning:) More difficulty getting her to nap and go to sleep which is more back to our good ole days :)

Her numbers are fluctuating more than I would like but the docs seem generally pleased. Her ANC has remained above .5 fluctuating between .6 and .8 the last few days. Her hemaglobin has dropped to 8.1 so she will get a red blood transfusiontomorrow. This now becomes more tricky though bc before transplant she was A neg but kaeden is A pos. She will eventually be A POS now too but this takes some time so in the interim they will transfuse her with O neg which is universal but we have never done this. They will also be monitoring this moving forward to make sure this switch happens smoothly. So transfusions will just be a little less straightforward as she needs them over the next few months.

Our original transplant doc is back on rotation this week and is really hopeful to get us discharged Friday!!! Today she took Sam off of her last two iv antibiotics and tomorrow we will work to switch over her cyclosporine to g tube as well. She is still on a PCA iv pain regimen but we have almost stopped her continuous morphine. The two main challenges right now are her GI tract and bottom fissures still cause her great pain. By the time the pain meds kick in from the "push" that I hit on her PCA or from an oral pain med, she is already sweating, shaking and will hold everything in. The pain docs are working with the pharmacy to try to get a quicker acting non iv pain med we could put under her tongue or on the inside of the cheek that would be absorbed through the bloodstream if I can get her to cooperate:) The other issue is she has corona virus. This is a common virus/ cold that typically isn't a big deal but her immune system is still new and fragile so it takes more for her to fight it. The coughing and runny nose all lead to more vomiting for Sam. Besides the fact that we want every precious calorie of pumped breast milk or food to stay with her thru her g tube , if she throws up less than thirty minutes after taking meds, we have to give them again. When she takes about 9 to 12 meds thru her g tube throughout the day and vomits 3 to 4 times on average per day, you can see odds aren't always on our side in avoiding this scenario.

Again though all in all still good news and things continue to move in the right direction. Going home is crazy exciting and scary at the same time and I know in some ways will be more difficult for us (managing germs kaeden brings home, administering all day and night feeds/meds ourselves without nurse help, anxiety over falls when platelets are low etc .) but I can't wait to be able to see Kaeden every day after school and kiss him goodnight!

Will post later this week with hopefully more information about going home as we learn it!!!

Wanted to say thanks again to all who continue to love and support us but special thanks to Andy for fostering our cats all this time and keeping them until docs say its safe for Sam and them to coexist again:) This has been such a huge help and Kaeden loves to know they are close by and he can visit! The second thank you has to go to my mom, our Baba who quit her job and moved here in a heartbeat and has been by our side ever since the first week of diagnosis. I don't thank her enough each and every day as I should. She is my rock and our kids are so lucky to have her!!!! I always felt the saying "it takes a village" was so appropriate in child rearing, but after this experience, I've learned in times of need that "village" is exponentially more important and we have been so lucky to witness our village grow and grow!!!