Friday, May 10, 2013

Visit with the immunologist

Yesterday we were able to get a visit with the immunologist. It is the next step in our process with tucker. When I originally called last week, the earliest appointment they had was mid July! I asked if there was a list we could get on to be called in the event of a cancellation. She told me they didn't do that but I could feel free to call and check periodically. Well I did feel free, everyday, twice a day! I'm sure they thought I was crazy, but it paid off! One day I got it pushed up to June, then the next day I got it for the very next day!! That day was yesterday. As much as I would like to take credit, I know there's someone else who is working this all out for us:) Our God is doing amazing things for us in this long, exhausting process!

Ok on to the visit. One of the main reasons we were sent to immunology was due to the results of his path from his endoscopy. Due to the severe inflammation from an unknown source, the pathologist suggested the immunologist because to him it seemed like it might be some type of immune disorder. The other reason is because of certain blood markers. I don't know all of the technical terms (although I should by now!) but basically he's anemic, and his inflammatory marker has consistently been up, hemoglobin is out of whack, and a type of white blood cell count is up. So our pediatrician was on board as well. On Tuesday we went to see our pediatrician for a blood count check. They did a finger prick and the results were not completely normal so the doctor wanted a better sample from the vein. Like I've said before tucker is a very hard stick, so needless to say it was traumatic and they didn't even get what they needed. So much so that I walked out of the lab and burst into tears! I have basically made friends with everyone there so one of the ladies came running over and hugged me. I felt so stupid but I just couldn't handle anymore.

Yesterday we got to the hospital by noon. My mom came with me and Carl met us there. We were in the room to see the doctor by 12:30. First one of the fellows came in to gather all the information. I swear I have told his story probably about a million times, but I will tell it a million more if I have to! Anyways after about an hour of background info and a quick exam she left the room to be followed by the actual doctor. We waited about 30 minutes then Dr. Forbes came in. She talked with us and told us he had already spoken with our GI dr at length to make sure she was on the same path. She then told us, that based on all the info that she thought his is going to be more of an immune disregulation rather than a disorder. Basically it means that it is more of a genetic thing. They wanted lots of labs taken to get started. She explained that they will be looking at each type of cell to make sure they are all working properly. They will also be running tests to make sure his antibodies are working properly. They will also do their own type of genetic microarray, however there's will look deeper in to see of there is any type of immune irregularity on specific chromosomes which will narrow their search. She also prepared us that some of these tests will take some time to come in and to be prepared that finding out a diagnosis is going to take a while. She said there wasn't really anything that was sticking out in her mind after looking at his chart. We were prepared for this. He has been somewhat of a question mark this whole time. It sucks having to wait, but we have no choice. However, we do feel like we are in the right place. Hopefully they can figure something out. The bad part is they tried to draw labs and after several sticks they were only able to get a little blood. Another traumatic experience, but this time Carl was there and I was able to step out. Obviously we cannot move forward until we get these labs. So the plan they came up with is to wait until he has his surgery. This way they can get all the labs they need while he is under anesthesia. I suggested this not knowing if they could, but they were on board! The only catch is, he will have to have his surgery at the med center location. Our surgeon performs surgery at different locations. So if its possible we will request the med center so they can collect labs. Reason is because some of the labs need to be read right away and cannot wait to be transported. So hopefully it will work out. If not, then they will have to try to pull some strings and see if the special team could draw blood from tuck one day using the ultrasound machine. However, from our experience in the hospital it's hard to get them. I'm still in awe that they don't have someone available for all services. Tucker can't be the only kid who had this problem. Oh well, I know it will all work out one way or another. The only thing is we cannot move forward until they have their labs. We will find out more on Tuesday once we speak to our surgeon. Please pray that this will all work out!

So basically we were at the appointment for about 4 hours! needless to say we were exhausted! That is all the info we have for now. Slowly but surely moving in the right direction. On a positive note, he is trying to swallow more food and we are still working hard with him. He chewed and swallowed some Mac n cheese the other night! I know this doesn't seem like a big deal, but at our house I was ready to throw a party!!

Please continue to pray for our boy and for some answers. Thank you all for your support and prayers we need them and are feeling them!!

I will end with some fun recent pics:)

Tuck is getting his muscle tone back and trying to climb on everything!

My sweet boys!

Waiting to see the doc yesterday

After we got home, such a trooper!

Took my boys to the park the other day:)


Tripp is going to kill me one day but thought this was hilarious!!

The boys love to play in coach's truck! We do this pretty much every afternoon;)

Thanks for stopping by! Have a blessed weekend:)

Love and blessings,

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It's a yes!

It's a yes!
how it all began...