Friday, July 15, 2011

JoJo update

Hey everyone! Just a quick update about Jordan's recent trip up to Chapel Hill. I'm sorry it's taken a few days, I just wanted to make sure I had all of my information before I shared everything so I didn't have to keep correcting and/or updating. We saw JoJo's infectious disease doctor ("Dr.C") again who order repeat xrays of his sinuses, and said that he was going to be following JoJo along, but that his diagnostician ("Dr S") would now take over his place for the most part since Dr. C felt he had tested everything he could test for and they had all come back fine. This was a bit of relief for me b/c the ID dr was always late and did not "do" much at any visit.

After that appointment, we saw Dr S and he said the recurrent fevers would probably just fall under a periodic fever sydnrome that would not need to be treated. It would just have a label but not treatment. He repeated some immune tests Dr C had already done becaue one of them was quite high, but according to Dr C "not high" enough to be of concern. Dr. S said he'd only ever seen one patient with hyperIgD syndrome, but he wanted to make sure we had "dotted all our i's and crossed all our t's" So he repeated IgD and IgE levels along with a CBC (blood count). He thought that if after he repeated those counts & everything came back normal, that he felt confident that JoJo probably did not have one diagnosis that could incorporate all of his "issues", that it probably would just amount to either being multiple dx's or just being unlucky.

After those appointments, we went and had his xrays of sinuses and chest done again followed by his barium contrast swallow study. The speech lady told us that JoJo was in fact swallowing food whole and that he's also aspirating both liquids and food. They prescribed thickened liquids for him. After that, she said she would talk over the test again with our pulmonologist, we'll refer to as our "Champion" and we'd get the prescription for reflux the next day. I left there relieved that we were at least getting some where and hopefully, once we corrected the aspirating issue, maybe we could get rid of all his chronic lung issues. That night at the Ronald Mcdonald house, we were able to relax, enjoy the cupcake decorating that a great group of volunteers put together and the commradary of the other families there. When we checked out of the RMH on Thursday AM before his last appointments, I felt so relieved that this "trial" was almost behind us. In fact when the lady asked me when we'd need to be put back on the Waiting List, I proudly told her that Lord-willing the next time we'd be back would be to volunteer! We all did a little dance and were excited. I remember that feeling as I walked to the car of how good it felt to be almost done!

JoJo enjoyed "cupcake decorating" one evening at the Ronald McDonald House, which meant he ate his weight in Jelly Belly's!

JoJo with his friend Victoria on the butterfly chair out back of the RMH!!

But when Dr Champion came into the room, I knew something was up right away. She normally comes in and is all cheery and saying how everything was looking good. But she started off by saying "Well, it's been quite a few days for you guys huh?" Then I got a knot in my stomach and I knew it wasn't over so fast! She said that given the fact that he was aspirating as the food and drink goes down rather than having reflux aspiration after the fact, she said she's concerned that he may have a laryngeal cleft. Basically it is a congenital defect/malformation or hole near his voicebox that keeps food and drink from going down into the lungs. She referred us to an ENT at Chapel Hill for another bronchoscopy type test because she said although the flexible bronchoscope could see somewhat, it was not as sophisticated as whatever the test he needs is. She said at his age, he really should not be aspirating unless there was an anatomical cause for it and that it would most likely require surgery to repair it. She also said that when she looked at the path reports from the bronchoscopy, there was a lot more food particles in there then there should be. She prescribed him Prevacid for his reflux issues as well. When she looked at the xrays from the day before, she said that his chest xrays were clear but his sinuses were thickened indicating sinusitis (sp?) but she thought it was not warranting another antibx script as of right now. She mentioned the fact that if he did have the cleft, it would not explain away the fevers of unknown origin, but that again, that was Dr. S territory.

I know this sounds silly when I say that I'm disappointed and bummed. I know it could be worse. I know that this will probably lead to him being a lot healthier in the long run. But I was on such a high yesterday morning when we checked out that it really caught me off guard when she said it wasn't "over" yet. Again, I know families that have kids that are battling life-threatening diseases. Several of them are my good friends and I've stood by their side during treatments, surgeries, biopsies, etc. What I also know is that my disappointment that my son's not done with his road of testing, doctors, hospital stays, etc is very real, regardless of the comparison to another. We all have our own struggles, our own road to journey on. I was just thinking that our road was almost done with hospitals and the medical field in general and turning on to a different portion of the road, like maybe a nice straight, smooth one. At least for a little stretch, anyways. (I am a realist and understand that I have 3 kids, 2 of which are of the male persuasion and therefore cannot expect to be "done" with hospitils, doctors for many years haha!) Maybe that smooth stretch of the road is just right around the corner but we'll never know if we don't keep going forward despite our road being covered with potholes....

This boy keeps us laughing: I asked him to make a silly face, and this is what he gives me!!

1 comment:

Ken said...

Your story tears me up, as do the pictures and captions. All I can say is that I love you all so much.