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.


Rebecca, Lance, and Acadia-Rose said...

I'm sending you all hugs. I can't even begin to imagine how you're feeling. You're in my thoughts and prayers. Please let me know if there's anything I can do (and, if you end up at Denver's Childrens for any reason, you have a place to stay!).

Lisa and Rustin said...

Oh Jessica!!
I am so sorry for your lack of answers! How frustrating and overwhelming!

Keep us updated!
You're in my thoughts and prayers!!

Hang in there!

Tamber said...

It was good to meet you at the run. I am sorry for what you are going through. We just had a similar scare with our son. He had a temp. for a week, blood tests came back with infection levels high, but they couldn't find anything. They treated him for a heart disease and it was super scary. The worst is jut the unknown. Hang in there, pray lots and I am sure with your amazing family lots of prayers will be sent your way.
Good Luck, you are in our thoughts and prayers.

The Webber's said...

You're entire family is in our prayers! You have tought guys in you family - they can withstand anything! Let us know if you (or your parents) ever need help with Kaden - we can take him for a bit if you need!! Take care and know you are loved by many!

Brooke said...

Oh, Jessica... my heart is aching for you right now, and I have been thinking about you a lot lately. It is so hard to watch your baby suffer and to have an uncertain future for them. (This is how I felt with Jasper) I will be praying, praying, praying! I hope you get some answers soon. I would love to do more to help... ANYTHING! Please let me know!

Rencher Fam said...

I was sorry to hear about your little guy. You will be in good hands at Primary children's Neurology though. We took our second son Nathan there when he was just two months old where he was diagnosed with craniosynostosis. As a mother it is so hard to see your children have to go through hard things. We'll be sure to send lots of prayers your way! The doctors and nurses there are so nice. Our doctor was Dr Brockmeyer and he was awesome!! Wishing you all the best-

Marisa said...

Jessica my dear friend!!! No wonder you haven't gotten back to me! My goodness i'm So sorry about all this stuff going on about Beckham!! I'm sooo glad his MRI came back normal, thank goodness for that.. But this blood work stuff must have you going crazy!!! The unknown i think is worse than anything out there.. I know you have Lots of People Praying for you and We are too, and Will continue to do so. Pls PLS call me or let me know how i can help out in anyway!! I can come get Kaden or bring you dinner or just come talk your ear off!! :) ;) Let me know seriously! I miss you girl hope you do better, and Things will work out. You've been on my mind several times a day and now i Know why!! Hopefully i can talk to you soon! Feel better my friend! Much love, ~Me

Team Avarell said...

I am so sorry that they can't tell you what is going on with your sweet little Beckham!! How frustrating!!! We will keep you guys in our prayers and if you need anything please let us know!!

craigo said...

That is so frustrating that the dr. Won't call you. I'm just glad the MRI came back normal. We'll keep praying for the little guy.- Kara

k8e said...

I'm so sorry Jess! I can only imagine the frustration involved. Little Beckham will be in our prayers. If you need a place to stay you are always welcome at the Rammells. I luff you!

Tyrell said...

My goodness. You have always been a hero of mine...but now you have become superwoman. You have so much strength. you are amazing.

Bart & Crystal said...

Hey Jessica- It's Jamie's friend Crystal. I am so sorry about everything. I also don't mean to be nosey...I took a look at your blog after Jamie filled me in a little bit. I wanted to read up a little bit because I truly think you are amazing. You live a life that is very inspiring. I think to myself, holy cow, how does jessica do everything that she does and is so cute and so together? If you ever need anything...a place to stay (if you do go to primary's), questions from doctors (I work with pulmonologist/intensivist's), or anything just let me know. :)