Ugh

That about sums up how I feel about this week. So let me back up. We had a great weekend and I was looking forward to an "easier" week than normal with only one doc appointment and the usual therapies and swimming lessons. That is not how it went. First of all I managed to hurt my knee and was in pain for several days. So I had to make an appointment which of course landed on Thursday which was also the same day as tuck's appointment and tripp's swimming lessons. Then we ended up having to take tuck into the medical center on Wednesday to see his surgeon because his g-button site will just not heal. The surgeon was a little puzzled as to why its not healing great and prescribed us some ointment and some more pain medication to help him sleep, etc. lately his site has been hurting so badly that we have to be careful not to touch it or he starts to wince in pain. It's not supposed to be like that. He has also not been sleeping well due to the discomfort and pain. So we are hoping the ointment and pain meds will help.

Today we had our appointment with our immunologist. I have been looking forward to it, loaded with questions as usual and ready to hear the plan. Last week she called unexpectedly to check in with us. After talking to her on the phone she answered lots of my questions and it sounded like all of the tests they had been doing were coming back normal with the exception of one. She told me that they were going to try and draw blood during our appointment since they only needed a little to repeat this one test. She also said that there would probably be other labs/tests they would want eventually but would wait until he has his repeat endoscopy and is under anesthesia to draw the majority of the next round of labs (since he is a hard stick). So I was expecting this appointment to be pretty easy with minimal information. However, it was not so much the case. First of all Tripp came with us this time and usually doesn't. He didn't nap today so he was quite the little pill:) second, the nurses tried to draw blood several times and couldn't get one drop. So my poor baby had to endure more torture:/ while we were talking to the doctor I mentioned about Tucker's g-button not healing well. She asked to see it and started asking us more questions. She told us they were leaning toward a specific disease that is genetic. I asked her why and she told us that this specific disease has symptoms like inflammation, problems in the gut, abnormal labs, and skins problems such as wounds not healing properly (all which tucker has). Apparently it's a problem specifically with the neurophyls (spelling probably incorrect). She told us the name of the disease but immediately followed with "do not google it, you will see lots of scary information". I've learned my lesson with that and am going to try hard not to google it until we know for sure. I honestly couldn't even tell you the name but I think it's my defense mechanism at work. I asked if he does have it what if any, would be the "fix"? She said the most reliable one would be a bone marrow transplant. The whole thing terrifies me. I pray he does not have this. My gut instinct is telling me he doesn't but we will see. If the labs come back abnormal again then they will go forward with a genetics test which will confirm. I also asked that if he didn't have this disease what the next steps would be. She said there are lots more tests to be run, but to remember a lot of these are extremely rare and extremely hard to diagnose. So we just have to be patient. She also told me to do whatever I've been doing to keep him "in a bubble" meaning keeping him away from public places and kids especially as much as possible for now. Specifically because his immune system is so compromised and they are not sure why just yet. I also got the impression she said this especially because of what they are thinking it could be. I've been pretty paranoid about germs lately because of tuck but its about to get worse;) I really wish I could put him in a bubble:) I left there not feeling so great. I just wish we could know what's going on. But I have to continue to be thankful and faithful because tucker is so much healthier now! That is what gives me the most assurance in all of this.

So because they need these labs drawn soon, they were able to arrange a time for the special team to come and draw his labs next week. (They usually only work with patients in the hospital but are coming to help us, thank God). They use an ultrasound machine to find veins and have been the only people to be successful in drawing his blood. Thanks to our amazing doctor and her staff they were able to make this possible. So we go back Tuesday morning to get these labs. Please say a prayer for tuck on Tuesday morning:)

Sorry for all the rambling and run on sentences, just wanted to update while all the info is fresh on my mind. Please continue to pray for our sweet tucker and specifically for continued healing and answers. We have been blessed by amazing family, friends, doctors and general medical staff.

Hoping and praying for a laid back weekend!

Thanks for stopping by:) hope all have a fun Friday!




Love and blessings,
Traci

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