First of all, a happy belated 61st birthday to my Dad! Hope you had a nice day yesterday! I had a drink at a place called Poppy's in honor of you yesterday!
On to the appointments!
Surgery: Jaime DOES indeed have an incisional hernia...to be repaired at a MUCH LATER date.
Hearing Test: PASSED! He does have a bit of a delayed response, due to sensory issues or fatigue.
Chest x-ray: NORMAL (as normal as one can have with CDH)
Scoliosis x-ray: NORMAL, his bones are pronounced because he's very skinny (boney) and has very low muscle tone. Lots of therapy will hopefully correct these issues.
Echo: "Looks good." To be followed up in 3 mos. If there is ever indication that Jaime is having issues with Pulmonary Hypertension, he will get a heart cath.
Cardiology: Cardiologist is a bit concerned with Jaime's significantly sunken in pectus. He will be monitoring this to make sure that it doesn't cause him any cardiac or pulmonary hypertension issues. If it does, Jaime will need to have it repaired. Many CDH'ers have this, but we were told that it's different with Jaime because he's a right-sided CDH'er. The irony of this, is that it is one thing we didn't even think we'd have to worry about, we didn't even question it. It's happening because Jaime constantly breaths fast and heavy. His body is just forming that way.
High Risk: Jaime is currently 18.2 lbs (still under 3%, but on his own curve), he's 29 in. long (25% for length) and his head circumference is 18 in. (Over 25%). So, in the growth department, not stellar, but overall everyone is pleased! NO G-TUBE, YEA! The oral feeding will come, and we were told that there's lots of things to do prior to even thinking about a g-tube. Jaime will be on supplemental formula for a while, he needs the calories because he's burning them too quickly by his fast breathing and his movement.
We asked about Jaime's horrible sleeping and were told to try Melatonin supplements to see if that helps! Much of it is just sensory related, but hoping the Melatonin will help!
As for the lazy eye, the left leg, pelvis and back...all will be monitored. We will be following up in Ciny in the summer!
We had the pleasure of visiting with some of Jaime's nurses up in the RCNIC. It was great to see everyone! We also got to visit with The Luken's (Anna-LCDH) and The Toney's (Ryan-LCDH). I got to speak with Julianne, Julia's (newborn RCDH) mom. She is having her repair done today, keep them in your thoughts and prayers. And I got to meet Colt's (LCDH) mom, Brigid. So great being in touch with all of you!
A big thank you to Bev and Jeanie for the great birthday present for Jaime! I'm sure he'll LOVE it once Tom gets the hammer and goggles out! HA!
That about sums up our trip...time to get Jared, who we hear had LOTS of fun with Titi! Thanks, Titi!
Here are pics from the last few days, enjoy!
Dakota also has a very pronounced pectus. Dr. Kays mentioned it at our last checkup and said that if it was still very so pronounced when she was 12, that he would fix it at that time (fixing it before then, the bones are too soft, and after then, too brittle). I also hadn't worried about it till he mentioned it. I mentioned what Dr. Kays said to my local pediatrician and she made a face at me and said she doubted surgery would be necessary and did not think it was affecting Dakota. I don't like to hear about any surgery, even if it is far in the future. Why is it important that they are Right-sided CDH with the pectus? Does it affect the heart or lungs more? Is it more rare for right-siders? Did your doctors say whether it could get less deep on its own? I would love to hear more detail about what you found out so we could compare notes. Please e-mail me at jennifertrafton@hotmail.com.
ReplyDeleteCongratulations on a good checkup! Jaime is a rock star!!!
Hugs,
Jennifer