Day +21 Excitement!

SAMs ANC has continued to slowly rise and is now above 1.0 which is fantastic! Over the last few days, we have transferred almost all of her meds from iv to oral which for her means "g tube" and we are now facing the possibilitilty of going home tomorrow! Her platelets unfortunately were a false alarm of recovery and have now been dropping steadily again but this is not atypical of transplant as they are usually the last line to recover. Unfortunately this just means more transfusions and more worrying as they drop to avoid any bump or bruise! Tomorrow she will most likely receive a platelet transfusion in the morning and then they want to observe her for any adverse reactions through the day. She has been getting a red rash all over her body with red blood and platelet transfusions since day 0 but so far no other adverse reactions-which is good. They pre medicate her with Benadryl to help with this.

SO as the prospect of going home looms I feel an utter mix of emotions as I look around this hospital room that we have spent 29 straight days in. On the one hand I want to sprint out of here and never look back and play four straight hours of leggos with Kaeden hugging him until he can't take it anymore. On the other hand, I'm petrified to carry little Sam out of this isolated door where she has been monitored and hooked to machines 24 hours per day, with pre measured meds brought around the clock, feeds administered they her g tube throughout the night, blood and nutrition labs done daily to track every change... At times you resent this constant interjection but now I also realize how much anxiety I will feel initially without it...

Now it will be up to us. Measure and track all nine meds are given two to three times per day. Make sure if she vomits within thirty minutes to re-administer meds. Change feeding bags, tubing, and pump throughout the day and night to give nutrition. "Hep lock", flush , and clean her picc line everyday and ensure it never gets wet. We will initially be seen in the outpatient clinic three days per week so I know we won't feel totally on our own and they will closely follow her progress.

But just as we were scared but anxious to start the process of getting to transplant initially, we are now scared but excited to get home and get into a groove with our new daily routine and responsibilities. I'm sure we won't be perfect, but I hope we can do what we need to keep Sam as healthy as she can be to now reach our next goal of day +100.  This is a big milestone in the transplant world equating to many decreased risks.

Whether it ends up tomorrow, the next day, or the one after that, I know we leave here stronger than when we came. Thanks to Super Kaeden ("kee kee" as Sam calls him) Sam has decreased pain, a growing immune system, increased strength and stamina (she's walking more), and most importantly... her smile back!!!!

So we bid our "prison of hope" (Jon Ackley :)) farewell and continue to the next chapter of this journey. Thanks to EVERYONE who has helped us come this far! Really feeling Sammy strong tonight!