+125 April 6 to April 13th we were inpatient for a serious Staph infection, it took three antibiotics to start to kill the infection, and then went down to one. Kole was given a temporary PICC line until we get a port placed hopefully next month. We were sent home after 7 days since he was in a good place, and I was able to give him the antibiotic via his PICC line. Unfortunately, two days after being home on the antibiotic Kole started having really bad GI issues, throwing up and having really bad diarrhea. We went to clinic a few times that week and got fluids and was given another anti-nausea med to help. We had to use the g-tube to give him Pedialyte which I wasn't thrilled about since we have had our issues with feeds in the past. Surprisingly the feeds went well, and we were able to keep him hydrated so he didn't need to go back inpatient. We have been battling some med issues with not showing up in his blood, which was causing a little scare since there was no explanation as to why this was happening. We have been going to clinic twice a week to do med blood draws to see what is going on, last week we were finally put on another auto immune med to help protect his body and his PICC line was removed. It looks like two fishhooks coming out and the nurses have to "smoothly" guide these hooks out. Let me just tell you it wasn't smooth at all and these kiddos should be given some numbing when this is removed.  We wish it could've stayed in a little longer since it's so hard to get a good vein on him and it normally takes a few pokes to get a solid one. But PICC lines in toddlers are not ideal since they are so active. So, we will manage until we get a port next month.

We also got an update on his bone marrow biopsy and although it was positive, his donor cells went down to 87% from 100%. His T-Cells are still not improving and went down again so his team is going to consider doing some IG therapy. We wish there was more we could do to help boost his immune system but unfortunately, it's just part of transplant life for the next two years until his body fully accepts the donor cells.

Monday 4/29 we FINALLY have a med level present! We will take it as a sign the new med is doing its job, and we won't need to do these labs twice a week (fingers crossed). While this is positive his g-tube continues to be a battle and we need it so we can't just get rid of it (as much as we would love to). We are dealing with another infection and continued granulation tissue (which is normal) and we have to get it cauterized more frequently than we would like. We are starting to gain some weight which is great, and Kole's team is happy to see, we are still trying to get as many calories into him as we can but with a toddler, we all know it's a challenge.

Please keep continuing to pray for Kole and sending all the good vibes.

#Kolescrusade

#tinywarrior