Many of you have followed Athan’s journey from the very beginning. You can skip this post. For those of you who are new readers, this is for you:
Our son, Athan, was born at home on May 29 and we were so glad to finally meet our boy! Everything was going fine for a few hours, but Athan’s condition begin to turn for the worse during the night. He would not eat, and he began to have trouble breathing normally. We called an ambulance. By the time it arrived, Athan was blue all over. He was rushed to UK Children’s hospital, stabilized in the ER, and admitted to the NICU.
The first few days were a terrifying blur of uncertainty. Our boy had lots of tests as part of the diagnostic process, and we mostly cried and waited and prayed. Then we learned that his pituitary gland was not functioning properly, and his body was not producing any of the hormones it is supposed to. As soon as they began medicating to compensate for his hormonal deficiencies, all of his vitals began to normalize.
We stayed in NICU for 16 days, then brought Athan home. Unfortunately, we had to return to the ER a few days later for a second (one week) hospitalization. The second episode was primarily related to finding the correct chemistry and dosage for his medication, which has now been taken care of.
The heart of Athan’s diagnosis is “panhypopituitarism.” It just means that his pituitary gland doesn’t work. Athan will have to be on medication for the rest of his life to artificially supply his body with the hormones it cannot make on its own. The good news is that this condition is very treatable.
He also has small holes in his heart - one between the upper chambers and one between the lower chambers. He will have surgery some time before his first birthday to patch those holes, which should permanently fix his heart problems.
There are some abnormalities on his EEG, which means that there may be some neurological concerns for Athan. He is on an anti-seizure medication as a precaution right now, and we will keep watching to see whether he will come off that med or not. He has never actually had a seizure that we have seen.
Athan is also hypotonic - he has low muscle tone. He’s floppy. We were referred to the First Steps program, and through that program Athan sees a physical therapist twice a week to help him gain muscle tone. His biggest challenge is head control, but he has already made great progress in catching up to the milestones he should be meeting.
Finally, Athan has had extensive genetic testing done to see if there is anything that could shed light on his treatment, as well as informing Ryan and I in decisions about having more children. So far those tests have not found anything specific, and more tests are pending.
Athan is currently doing very well. Scanning a few of the pictures posted previously will show you his giant grin, which is very much common at our house. He is such a happy boy! He takes his medicine well, eats well, sleeps well (most of the time), and fills diapers like a baby should. We have follow-up appointments at the UK clinic about once a month, and will continue to post updates as we learn more from the doctors about our kiddo’s condition.
If you have the time to read Athan's Journey from the beginning, you'll see a family carried along by the prayers of The Church, which is impossible to summarize.
I hope this helps some of you newbies catch up! :)
