Xander

It's been a while since I've updated the site about Xander's health so I thought I would today. Overall he's doing pretty good. We had a scare in the beginning of the month which was totally my fault. It was a dumb mistake that resulted in two years being taken off my life. I've learned my lesson and will not make the same mistake again...maybe.

What happened was Xander had blood work at the end of July which was not done at Hopkins. His liver enzymes were elevated prior to this draw so they were checking his numbers weekly. Well one week I was not up for the trip to Hopkins...lazy...so I decided to get them done around here. (Really. It's not like I went to some ghetto lab, it was Inova Fairfax which is a great hospital and has a transplant center. I like getting his labs done there rather than other labs because they can get the results back to you in 24hrs.)

So we got a call on Thursday night that his numbers were terrible and he needed to go to Hopkins to have his labs done again. If his numbers were still high, he would need to have a biopsy. I didn't get the message until Friday afternoon (broken phone thanks to X-man) so they said go to the ER tomorrow to get labs done. Now you know why we ended up in the hospital on a Saturday. Thank goodness everything was ok. His numbers weren't great but they were scary high like the numbers were from Inova. We ended up going home that day. Phew! No admission and no biopsy.

I thought I was so clever not wasting my time driving to Hopkins for labs. Boy was I wrong. We ended up spending more time at Hopkins because the labs from Inova were wonky. If I would have just gone to Hopkins in the first place our Saturday could have been saved. I could have kicked my own ass for all that. So now I've learned, if his labs aren't good, just go to Hopkins...don't risk it.

Back to Xander. He's still struggling to put on weight. I really thought this wouldn't be an issue once he was transplanted but it still is just on a smaller scale. I don't think he gets enough calories during the day to help him catch up so to speak. He eats very well but now that he's been diagnosed with his food allergy (dairy/eggs) we have a hard time filling him with healthy fats that help him gain weight. Since he has not put on enough weight, he's on the feeding tube at night. Ugh. I really can't wait until we get rid of the Captain (name of feeding pump is called Joey and it has a kangaroo on it...Captain Kanagaroo...Captain...ok...so it's corny...Linc likes it.). It's such a bother and I can't stand him being stared at in public. Sometimes I want to scream at people to stop staring at him! At least he doesn't know the difference and hopefully by the time he does, he won't have it any more.

Xander is also still trying to kick this darn EBV. Can I just say 'I HATE EBV!' It scares the living daylights out of me. I have a hard time dealing with it. When I think about it, my anxiety skyrockets. I wish so very much it would go away.

Other than these two issues, all is going pretty well. He's a maniac. I joke and tell the docs they gave us a turbo liver because this kid doesn't know how to stop. He is go-go-go! I really think he is making up for all the time he was lying around in the hospital too weak to do much else.

Which reminds me. This time last year he started to get very sick. His liver was giving out. I'm glad those memories are a thing of the past. We are in a much better place now though I may complain about how busy he is, I honestly wouldn't have it any other way.

Thank you Angel Donor! You are forever in our thoughts and prayers.