Jack had an appointment yesterday with an allergist. We noticed that he breaks out around his mouth with a red rash and hives when he eats certain foods. So far we noticed it with Carvel cake, soft serve ice cream, pasta with butter and cooked pudding. No, we don't feed him lots of junk but we do let him try a taste of stuff we eat. Geez, I guess that means we're bad eaters! Anyway, while we were at the office the doctor asked about some other stuff and to make a long story short she did a skin test and found that he has dermographism. This means that when he gets a scratch it welts up pretty bad and he gets super itchy. The doctor has this condition herself so she was able to explain it in detail. It gets worse with heat and if you scratch an itch it just sort of spreads and feels like bugs on your skin. Just talking to her made me itchy! It actually made a lot of sense with stuff we've noticed. For example, whenever Jack gets a bath he scratches himself like crazy. The hot water is a trigger. Anyway, she also suspects food allergies so we have to get bloodwork drawn. We think that he might be sensitive to dyes but you can't test for that. She recommended going all organic for him. The funny part about the whole thing was that at the end of the appt she told us not to be fearful or scared about the dermographism. That it was manageable. James and I just looked at each other and knew what the other was thinking, "Lady, this kid was on ECMO - we're not going to sweat a rash!".
We ended up leaving with 2 adrenaline (Epi) pens in case he has a severe reaction to a food or something.
Now for the stressful part - the blood draw. Last time we were at Hopkins they couldn't get an i.v. started because Jack has bad access. They said he's a hard stick. I clearly recall the day they tried a ton of times and finally gave up. I think it was one of the more traumatic things for me to watch as a parent. Anyway, we left the allergist with a lab slip and they said it will likely be several vials needed for the allergy tests. I called the local NICU where Jack was and one of the nurses said she could draw the blood. She is REALLy good at it. She also said if we do an arterial stick that we should get everything we need with only 1 stick. We also want to try and get 3 vials for the Mass General CDH study so they can have more sample to work with. Anyway, I totally screwed up the time we were supposed to meet and the lab closed early so we'll have to go next Wed. We did get to go visit the NICU though. Jack's primary nurse Dotty was working and she grabbed Jack right from James the minute we arrived. Jack totally remembers her and was smiling and you could just tell he felt so happy and comfortable. All the other nurses and NICU director came out to visit too. It was strange because as we were walking in James and I both commented that the sounds and smells bring you right back to your time in the NICU and it's almost traumatizing. I'm so glad we had such a great visit and left feeling like it was a positive experience. In my mind I only remember the difficult days in the NICU. Also, while we were there the most amazing thing happened. For weeks we've been trying to teach Jack to wave using his hand and fingers. He learned how to wave the whole arm from his elbow and shoulder (which looks so funny). Anyway, as soon as Dotty held Jack he started to wave hello (he does this when he's excited to see someone). Dotty said, "show me hello Jack". Wouldn't you know he did it with his fingers just like Dotty! I couldn't believe it! They took photos of Dotty with Jack and us and handed Jack around for everyone to hold. They call him one of their stars. It's so sweet. They also told us to mark our calendars for the NICU graduates party in October. We also just got the invite for the Hopkins NICU party in July. I can't wait to see our Hopkins friends at that. I hope Gina and Benji will attend with Wyatt too. Then in December is the ECMO survivors party. Jack has a busier social schedule then we do!
Anyway, that's the update for this week. Please say a prayer for Wyatt since he's been having some discomfort from his reherniation. We'll be looking forward to hearing about his xray results and surgical consult next week. We hope this will be his very last hernia repair surgery!
Love
Vic, James & Jack
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