So I was a week off last week with the days post transplant. But my post title was spot on regarding the unpredictability of this thing called a BMT. It has been a rough past week. We were fortunate enough to be able to spend Thanksgiving at home and had oh so much to be thankful for this year! The obvious being that Coleson was able to be home and have this Thanksgiving and for all of you who have made this difficult journey a little less difficult. In so many ways you all have helped us get through this.
We did get news on Saturday that one of Coleson's BMT "Brothers" past away. We didn't get to spend much time with Johnny before he went into the hospital for his BMT but we did with his loving parents Karen and Mark and his beautiful sister, Molly. It doesn't take but a day to become "family" with those at the Ronald McDonald house and the Nides family was no exception. We hurt for their family.
Meanwhile Coleson and I went for his weekly labs Monday morning with mixed results. Magnesium level still low and more importantly his White Blood Cells and ANC (neutrophiles) were very low. We had to go back in the afternoon for his echo and they wanted to give him a booster shot of neuprogene also. So after his echo we went back to clinic to get his shot and when we went back to cardiology they Dr. said he wanted to admit us to the hospital as the fluid around his heart was increasing. Since it was after 5:00 we had to go through the Emergency Room to get admitted and it took about 3 hrs. Thankfully the care partner at clinic gave me some cookies crackers and drinks since I was totally unprepared for this. It took another 3 hours to get through all the initial procedures, meds, etc. They pumped him full of lasix, magnesium and back on steroids in hope to dry the fluid out. The echo this morning showed very little change but cardiology doesn't want to go in to drain it quite yet. So we hang out here for a couple more days to see if it starts to decline. They also gave him more IVIG today for his low counts.
It's been 160 days (including those pre-transplant) of this roller coaster ride and it is starting to wear on me. It is very disheartening to be getting re-admitted this long after transplant. It seems like every week we have been dealing with one thing or another. I know others have had similar experiences post transplant and then there are those that didn't even get to see day T+132 and then there are others that have been removed from their homes for well over a year trying to mend their sick child. So when I think of those families, I am reminded how lucky I am to be holding my little boy and that we are at least in our home town even we are not at home.
On a happier note, a BMT "sister" is going home this week. Ariauna was one of Peyton's best RMH friend's and Nathalie her mother one of mine. She has done really well and we are happier for her. Another RMH friend Karee Jo who endured a grueling 8.5 hr surgery two weeks to remove several tumors also was back at the RMH providing much needed spirit after a tough weekend. I am very happy for both of these 2 little girls and their families.
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