Sunday, May 10, 2009

Wow, I have alot to catch up on!!!

Alot of time has passed since my last post. We are currently sitting in St. Louis waiting for a new liver for Malakai...let me explain.

February 22 I took Malakai into Riley. He was scheduled to go in on the 23rd to give him some albumin and lasix to try to reduce his ascites (fluid on his belly) and insert a feeding tube. He had decided he didn't want to bottle feed anymore at all and had started to turn down the breast. He needed the calories, he didn't have any reserve to not eat. But the day before he started acting lethargic so Cindy and I headed to the ER. He was admitted and his sodium level was dangerously low (112...135-145 is normal) so he was sent to the ICU for three days. This made his ascites worse and at his worst he looked 9 months pregnant. We spent four weeks at Riley trying to get his belly to go down and didn't have much luck. They mentioned that he was probably heading down the transplant road and we needed to look into the hospital we wanted to transfer to. We'd decided on going to Cincinnati Childrens and scheduled for him to be seen 10 days out. The docs at Riley told us that St. Louis Childrens was a great place so we called and they got us out there the very next day. They sent a jet out to get him and Josh, Cindy and I drove out there. We were at St. Louis for 8 days and went home. He was put on the transplant list on March 20 with a PELD score (Pediatric End-Stage Liver Disease) of 5 but they requested a 25 and it was granted.

Fast forward, he got his first call April 24 and we turned it down. We were waiting to see if Cindy (Josh's mom) was a match for living donor. We wanted her to be a "back-up" incase something went wrong during the transplant. She was blood type O, which matches Malakai. To those who don't dad died after a lung transplant and I would feel way better about the surgery if he had a back up. It took them 6 weeks to tell us she wasn't a match. We felt OK about turning a liver down because he was doing so well. We got his second call on May 1st, exactly one week later. We dropped everything, packed what we could and headed to St. Louis. We got to the hospital and they checked his levels. They wanted to have a starting point for post-transplant. His glucose level was really low (27...over 50 is what they want it to be) because his feeds had been shut off too long. So they got him some sugar water and hooked him up to an IV. Within 5 minutes his levels had become normal and he was acting much more alert. I took him down to get a chest X ray to make sure his lungs were clear and we waited...Perry and Cindy got there, and we were told his surgery was scheduled for 9:30 pm. They said they would come get us and take us to the OR around 8:30 - 8:35 the surgeon came in and said the liver wasn't going to work out. He said the way the "plumbing" was that they would have to take too big of a piece and it would work for Malakai. So we went home and had to come back in 4 days for his clinic appointment. While at clinic the doc expressed her concern about his weight gain and some of his levels. He needed albumin three days in a row, but they gave us the option of staying in town and coming back daily instead of being admitted. So we decided to get an apartment in St Louis. It will cut back on the stress and anxiety of waiting for the call and we would be close. I had a gut feeling that I needed to have my bloodtype checked, just in case. I was SURE that I wasn't O but wanted to check just in case. To be a living donor, you have to first have the same blood type, then they do further testing to check your liver more in depth. Sarah called me from her docs office, she had an appt that day, and told me that we were O...since we're identical twins, her bloodtype is my bloodtype. So I called up the Barnes Hospital where the living donor would be seen and got in that day. All my testing is done and now we wait. They've scheduled our surgery for May 19th if I am indeed a match. They will still take a deceased donor if one becomes available before then. But if not, and I am a match, that will be the day of his transplant.

I know there is a LOT that I left out. I just don't have the time or energy to remember it all right now. My email is if anyone has any questions or comments at any time. I will try to check it daily or at least at have someone else check it for me! Please pray for everything to go smoothly and that Malakai gets his perfect liver!

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