Thursday, August 13, 2009

We are home!!

I will do my best to sum up the events of the last few weeks without writing a book!

After my post about his slight fever I took Malakai to his pediatrician Monday (August 3rd) and after looking in his ears she determined they weren't red enough to warrant a fever and just to be safe sent us to Riley. They ran some blood cultures and swabbed his nose to check for anything viral. Nothing showed up and it looked like we'd go home on Thursday (we had to wait 48 hours for the cultures). Then Wednesday he decided he was going to stop eating anything. He'd stopped eating real food Monday, then stopped breastfeeding on Wednesday mid-day. By Wednesday night, his stools were very loose and a greenish color. Thursday he started to spit-up. It wasn't a large amount, but he's start to gag a little bit, then throw up. So I was concerned about what could be causing this. Then he started to have high blood pressure. He'd never had a problem with this before so they had to figure out what was causing it. They said it was high, even for an adult. It was in the 130's-140's/90's-100's. It's supposed to be under 110/70. So that was concerning and the docs in St. Louis asked for a liver scan. Then early, early Friday morning he started vomitting bright green. And I mean, BRIGHT green. So they ordered X-rays and a full abdominal ultrasound at 9 am. About 10:15, after talking to Penny (his transplant coordinator) she said worst case scenario, he had a blockage in his bowel and would need surgery. Sure enough, after reading the ultrasound and Xray, they decided he would indeed need surgery.

They lifelined Malakai out to St. Louis at about 2:15 pm, only four hours after finding out he'd need surgery. His blood pressure was pretty high at this point and he was acting really lethargic. Not really moving much and not caring when they were messing with him. That scared me pretty bad...knowing he was getting ready to get on a flight and wasn't looking good. I was supposed to fly with him and once again, they got into his room with the stretcher only to find out I couldn't go because I didn't have my driver's license! This happened when he was airlifted to STL the first time. I couldn't go that time because there wasn't room. So I had it in my mind that I was flying with him until the transport team arrived. I guess lesson learned, grab my purse ANYTIME I leave the house. That was the only time I broke down during all of this. I haven't cried in awhile. But them telling me my son needed an emergency surgery and then taking him from me was more than I could handle! I kissed him on the forehead and he was straining his neck to see me as I walked away. I had his stroller in his room and literally pushed past the nurses to leave his room with an empty stroller. I was crying and didn't want to see him being taken away. I am feeling the same emotions all over again!!

So he got to STL and they did their own scans to look at there. He was taken into surgery around 10 pm and it took a few hours to complete. He did very well. They said after his old liver was taken out, his diaphram was left a little thin due to cutting it away from his body and because his new liver was a little too big it had to be put in a different place than his first liver. Over time, his diaphram got a little hole in it. So his intestine was able to move up into the small hole, creating a hernia and therefore creating the obstruction. That's why he'd stopped eating, starting having diarrhea, and eventually throwing up bright green bile. They put a small skin graft over the hole. He stayed two nights in the PICU and was sent to the regular floor on Sunday afternoon.

He had a chest tube in and as soon as they took it out, he was so much more comfortable. The surgeon (Dr. Earl) that came in to remove the tube said that he was the toughest kid he'd ever removed a chest tube from. He didn't even flinch!! He said "I would've been screaming if that were me!" So needless to say, I have one tough little guy :) He also had an NG tube to suction the contents of his stomach out, but he decided to remove that on his own :) He started to breastfeed again and was pooping again so they sent him home!

I was reminded again how much I LOVE the team at St. Louis Children's Hospital. We are so blessed to have found them and I can't say enough wonderful things. Anyone looking for a liver transplant team, I would HIGHLY recommend this facility and team! We trust them all with our son's life, with no questions about why they do what they do. I feel like each and every person on their liver team truly cares about Malakai. I feel like they do their job to save lives and they truly care about their patients on a personal level. And the nursing staff is wonderful as well. Everyone was so excited to see him!(Don't get me wrong, I love the Riley nurses as well! Just not thrilled with the doctor staff...) Dr. Lowell, his transplant surgeon, couldn't get over how great he looked! He just went on and on about how much weight he'd gained and how he didn't even look like the same baby!! He said he wanted a before and after picture because he just looks that GREAT!

Ok, before I make this a book like I promised I wouldn't do...Thanks to everyone who prayed for us. This 10 day hospital stay was the first I did mostly by myself, so that was a challenge but now I know I can do it! He's getting older and realized more than he ever has about what was going on. So please continue to pray for health over Malakai and that he is over this stage and can go on to live a normal, healthy life!

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