Thursday, July 25, 2013

Here we go again...

So last week we had to take tucker in for more blood work, per the immunologist. He had some abnormalities on his previous labs and they wanted to recheck and see if further genetics testing was needed or not. They had a specific disease in mind. They called in the special team to do his bloodwork (since he is a hard stick and since they needed quite a bit of blood). We went in last Tuesday and it always amazes me how fast and efficient the special team is when drawing blood. They use an ultrasound machine to locate veins under the skin. Luckily, for my sweet boy, they were able to locate a good vein and get all the blood they needed within minutes. That was last Tuesday and we were told it would be at least a week before we got any results. In the mean time, Tucker's g-button has continued to be painful for him (which is not normal) and we have had to give him pain medication every night in order for him to get a few hours of sleep. I called the surgeon's office again yesterday to follow up on our concerns and he basically told me he has done all he can and that the pain could be due to the larger problem that we are trying to figure out. They checked it a couple weeks ago and didn't think it was infected. So I put a call in to the immunologist to see what they thought about the whole situation. I called several times and finally got a call back while I was in with the hematologist today, which I figured would happen:/ ok, I basically got an information overload today so I will do my best to break it down by docs today.

First, we went to our hematology doctor for our monthly check on Tucker's iron. The last time we went his iron levels had sustained but had not gone up like they were hoping. He told me to continue with the special iron supplement and we would see. Well today it was down. He also noticed that his white blood cell count was elevated indicating some inflammation. I told him about the g button site so he took a look. To him, he thought it looked inflamed and recommended I go see the surgeon. He called the surgical floor to see when someone could see us. So we go tomorrow to get that checked out. Back to hematology, if in fact the iron supplement continues to not work, then the next step is an iron IV infusion. It's risky but may be necessary at this point. He said he wanted to see us back in four weeks like normal and they would check his iron, if still low they will go ahead with the infusion that day. He wants us to get the button checked out first, the inflammation could be from that which could manipulate the iron levels. So I'm praying this is the case and we don't have to do the transfusion.

On to immunology. I was luckily able to call the department back and get directed to the doctor who called me right away. I got a lot of information, but in a nut shell: most of his labs looked good with the exception of the one they were concerned with. So we have to go back in next week for more labs for the genetic testing to confirm or deny the disease they are looking into. I am going to hold off on sharing the name of the disease because I myself am trying not to do much research until we know for sure. The doctor gave me a website with accurate information for parents in case I want to look into it a bit. Basically if he has it we will be looking at a bone marrow transplant. So I am praying this is not the case. But I know this is all in God's hands and I will try and remain peaceful knowing that:)

Like I said, I'm coming off of an information overload so I'm sure I will have more info to post later when I completely gather all my thoughts. Just have had several people ask and I figured it would be easier to post the gist of the info for now.

On a good note, aside from the pain Tucker is doing really well, eating better, getting closer to walking and building his strength back up. Please continue to pray for our little boy:) (and his mommy too;))

To end on a pleasant note, Tripp has been in swimming lessons for just a few weeks and has become quite the little fishy! I am so proud! We spent the day at my dads house yesterday and he swam his little heart out:) tuckey preferred to sit on the side and dip his feet in:) it was a fun day. I will end this post with some fun pics:)

Thanks again for all your thoughts and prayers! I will update again very soon. Hope all have a blessed Friday and weekend:)

Silly tuck!

My little dare devil!


Love and blessings,

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