4 Year Trauma and Hope
Updated: May 16
I'm going to start with the good, because many may already know Jag's history and diagnosis. I've prayed for 4 years for healing over Jaeger. I don't want him to be dependent on pharmaceutical drugs his entire life. It hurts my natural minded heart. (don't get me wrong, I'm thankful to have access to that grace). I have struggled hearing about faith and healing, wondering if my faith isn't strong enough, or good enough. I struggle to think that God has said 'no' so far to my prayers. BUT this year, while praying for healing and actually trying to listen for a response, I feel I got one. I very clearly felt God say "you have no idea. You have NO idea what I can accomplish THROUGH his diagnosis. This diagnosis will be part of a bigger testimony in his life. If I heal now, others down the line may never hear of me. Trust in my timing, because it is perfect and I am good" Wow. Okay God. Okay. So I continue to pray healing, but also pray for His will in it and that I would have a sense of the bigger picture.
I try to separate the days, the joy of Jaeger's birthday on the 9th and the anniversary of the trauma of April 10. I came out of the shower that morning, feeing great and confident I'd be taking Jaeger home to start life as family of 4. The nurses and NICU doc were there to tell me that Jag kept having episodes of being unable to breathe, until he was able to cry, so they were going to admit him to NICU. Things went fast, they couldn't get nose tubes in so had to intubate my 24 hour old son. Praise God for NICU care, but it is not normal or natural for a mom to be unable to hold and care for her new baby. I know many moms that have faced this. He would make the motions and facial expressions of crying, but no sound came out. This started a process of ENT visits, MRI's, scans, diagnosis of Pyriform Aperture Stenosis, transfer to Children's, surgery at 5 days old, more tests and pokes and IV's, and a diagnosis of Adrenal Insufficiency. 2 weeks in the NICU (a very brief stay in many NICU stories) and we headed home with emergency injections, daily steroids and a lot of fear. Fast forward 6 months and Jaeger's growth had stalled. Between the 4 and 6 month appointments he hadn't grown. So back to Children's for a horrific Growth Horomone Stimulation Test (He had to be poked at least 10 times, after a very very long failed attempt at placing an IV), which led us to the closest we've been to an adrenal crisis. He started on Growth Hormone shots in December. Also in December we did a 'sleep' study, though no sleep was had by me, and just enough sleep was had by Jaeger to get what they needed.
Diagnosis: Jaeger has adrenal insufficiency and is growth hormone deficient. I believe he falls under the Panhypopituitarism category, which is a condition in which the production and secretion of all hormones by the pituitary gland is reduced. The pituitary gland, also called the “master gland of the body”, is a pea-sized organ located in the center of the brain. Essentially in a normal body, the pituitary gland sends signals to the adrenal glands (on your kidneys), and that allows it to release cortisol. Cortisol is your fight or flight hormone but also has big impacts on your immune system and energy. Jaeger's pituitary does not send the signal, so there is no cortisol being produced.
Treatment: Jag takes Hydrocortisone 3x daily (in pill form, because my 4 year old is a CHAMP). This replaces his normal production, though not perfectly. When he has fever, is sick with more than a cold, or spends time in heat he has to triple his dose (stress dose...for when your body is under more stress). When he vomits more than once or has diarrhea, we are supposed to inject solu-cortef and take him to the emergency room for an IV to make sure his body has the cortisol it needs. So far, in 4 years, we've not had to inject, though we have done the ER for an IV once after vomiting. Basically, what's an inconvenience for most parents with a stomach bug is my worst nightmare. He also has nightly injections for growth hormone. He handles these SO WELL and they're working, he's on all growth charts and is basically a perfectly normal kid otherwise!