Tuesday, June 22, 2010
my little sweetheart
I still feel like I have hardly any answers, but I guess we are slowly getting somewhere with the little dude. Beckham's MRI report came back completely normal. I am so thankful for that. I have no idea how I would have handled him having a brain malformation; oh that would have been so horrible. He has a healthy, functioning, perfect little head and brain.
Unfortunately, his blood results were not as good. While we were in Utah I got a call from his Dr.'s office saying that the blood tests came back abnormal. My heart instantly dropped. He had 3 different chemicals (lactate, ammonia, alkaline phosphatase) show up as abnormally high, one completely off the charts. All three are liver enzymes and we weren't given many answers upfront. We did a little research on our own, but there is a whole sea of information out there and it's just opening a can of worms that I would rather not dive into. His nurse said that the tests that were run are not your every day tests, and they are extremely sensitive. Any mishandling or mistake in protocol can mess up the results. The office wanted to rerun the tests to be sure the results were accurate.
The day we returned from our trip we took Becks in for another draw. Uggh. I hate watching him get poked. Thankfully, it wasn't quite as traumatic this time. The results came in a little better. The lactate was normal and the ammonia was high/normal. The alkaline phosphatase was still extremely high. The high level is about 300. The first time his level was 4,400, the second time it was 2,000. So, it did go down, but still is almost 10 times as high as it should be. What does this mean? Good question; I have no idea. I do know that it does coincide with his extremely weak muscle tone (especially in his upper body).
I have been playing phone tag, leaving messages, and getting more and more frustrated. Finally, yesterday, I got a message from the doctor, via a receptionist. I was so disappointed that the doctor didn't call me himself. I know he is busy, but this is my baby! I had specifically asked that he call me since I felt so in the dark and no one else could answer any questions. His message said that Beckham needs to start developmental therapy (whatever that means!), and see the neurology clinic up at Primary Children's in Salt Lake. I still have no idea what the heck could be wrong. Is it serious? I have my suspicions as to what is going on, but obviously it could be a number of things, so I guess time will tell.
Today I talked to the nurse again and she has messages in to get an evaluation to see what kind of therapy might be needed, and to the pediatric neurology clinic at the hospital. We might be heading back up there in the next week or so. I just wish I had more information so that I could sort of prepare myself for what might be coming, so I could know if I should be worried or not, so I could somewhat plan my life. Not that I am any good at that anyway, though.
I sort of had an attack yesterday after I talked to the receptionist and still had no idea what was going on. What if we end up having to be up in Salt Lake for an extended period of time? What if Kaden feels totally neglected and misplaced? Does Matt miss work that whole time? He has to be involved with his baby. What if this requires a lot of testing and procedures that will cause my baby pain? He won't understand what is going on. Blah, blah, blah. I just don't want another thing to worry about. Hopefully, this will just be a big inconvenience and there will be nothing to worry about. I'll post more when, and if, I know more. Again, thanks for all the support and prayers; it means so much to all of us.