Day -14 Pre Bone Marrow Transplant #2


Day -14: Kiira is currently in the OR getting her central line (a very tiny tube on her chest that goes into a vein, which makes it easier to do blood draws and give her medications and ultimately, the blood from the donor). She is also having an endoscopy to check for strictures in her esophagus. If she has any, they’ll do a dilation. Then they will scope her upper intestines to look for abnormalities. The inflammation in her skin could result in inflammation in her intestines, which would affect her body’s ability to absorb nutrients and could be a cause of her weight loss. But we hope her weight loss is just from her being so busy and needing to eat more. Kiira will also get a skin biopsy to check for collagen VII. She has never shown any on the past 4 biopsies, but it’s a part of the research. They will also see if any cells remain from her previous donor. Lastly, they will change out her gtube. So it’s a busy day for our girl. Please pray all goes well!
Post surgery update: 

Kiira did great through her time in the OR. She got her central line placed and new gtube. She had a biopsy on her leg and we should have those results in a few weeks. They also did an endoscopy. Her intestines looked normal but they did small biopsy just to make sure. Kiira’s esophagus showed signs of blistering and slight narrowing. It wasn’t enough to do a dilation but they’ll keep an eye on it. This is very common with EB and people end up choking, even on their own saliva due to the narrowing, which occurs from blistering, webbing, and scarring in the esophagus. Therefore, frequent dilations can be required. 
She was pretty grumpy after coming out of anesthesia, but knowing she could see her sisters when we got home helped her. Today taught me that she will be a handful in the hospital this time around–she is definitely not the easy going baby who just lays there like last year. 
A couple days ago Kiira got to see Love for Baby Catt, who kindly provided us with new gloves and super cute slippers that Kiira loves and they actually stay on! The girls checked each other out and showed off their purses. It was so cute! 
Kiira met with Dr. Tolar on Monday and we went over the basics of the BMT, but having done it before, we sort of know what to expect, although each one will be different. We also met with the dermatologist who determined Kiira’s rash is Nummular Eczema. This is good in that we don’t have a fungal issue to treat so Kiira’s transplant will continue as planned, but can be an ongoing issue to deal with. 
Yesterday we had a day off so we took the older girls on rides and Kiira shopped. She LOVES getting out and is such an angel in her stroller. Being isolated after her BMT will be tough for her. 
So we are thankful for today’s good outcome and your prayers. We keep taking one day at a time and it helps immensely. Also a big thank you to the sweet kids who sent Kiira some cards. Kiira loves to look at them.  
Tomorrow is another early, busy day, so wishing you all a good night.


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