To God be the glory for all Caden’s success. This little boy is living proof of God’s power.
Caden was released from the hospital at about 5PM yesterday. He would have probably been released earlier but the doctor who had to make the final decision was in surgery most of the day.
Caden did have some more blood tests run while in the hospital. We took the opportunity on Monday to get some blood drawn for some lab work while Caden was under anesthesia. He is very hard to stick due to small and curvy veins. Several doctors needed tests run. We got all their lab orders together and had the blood drawn while Caden was unconscious to minimize his discomfort.
All of the tests came back looking pretty good. The only one that was border line was the immunology. The immunologist met with Sherry and me today to discuss the results. There seems to be very little research on kids with Caden’s immune disposition. Caden is technically considered to be partial DiGeorge simply because he does not have a severe immune deficiency. Caden is considered to have a mild to moderate immune deficiency. What this really means is that he is limited in the vaccines he can receive, non to date. We are waiting on a few more lab results before a recommendation is made to allow him to get live vaccines. (i.e., chicken pox, MMR) This is not a huge deal right now because those are not normally given at this early age anyway. There should also be some precautions taken when around other people who have had live vaccines recently. That includes the ones I just mentioned as well as some vaccines that are given to folks preparing to go into a war zone.
We do anticipate a trip to Duke in the near future. There is a doctor up there who is one of if not the world’s leading immunologist. She is the doctor who cared for the little girl whose Grandparents posted a comment on Caden’s Page on June 3rd. This little girl’s name is Hailey and she got to go home on Tuesday for the first time in months after being at Duke for a transplant. Her immune system was in much worse shape than Caden’s. Hailey is about a month older than Caden and was born in Boston where she had heart surgery shortly after birth as well.
We are also considering a trip to New Jersey before we talk to the ENT (Ear, Nose, and Throat) doctor about the possible botox treatment for Caden’s swallowing problems. There is a specialist that used to work at CHOP who now runs a pediatric feeding clinic in NJ. We will keep you posted on this as we get more information.
This has been a tough few days, but we believe that things are already better. Praise God that Caden has not seen a reflux since last weekend. Caden does have some retching spells, but they are milder than the ones he was experiencing before this surgery and they seem less frequent as well.
Please keep us in your prayers. We still have a few tough decisions to make and a ton of information to process. Just ask God to help us see though to the most important things to help us make the right decisions for Caden.
I don’t know why, but I feel inclined to say hello to Eric and Karen this morning. I think about you guys often and hope you are doing well. My thoughts and prayers are with you.
HO