We finally had a confirmed diagnosis and eventually discovered that I was the carrier of GSD9A as well. Since I have XX chromosomes, my other “X” takes over and tells my body what to do.
It is truly amazing how God created our bodies and the differences between boys and girls. And how we are knitted in our mothers wombs. (Ps. 139:13-14)
As we began to navigate a life of living with a rare genetic disease, a flood of relief and uncertainty all hit at once. What would it look like for Gideon? Would his childhood/life be “normal”? Would we experience life differently or would things be relativity normal? (Whatever normal is anyway) One thing we were constantly reassured about was that out of all the GSD types, this one was on the better side to have. Easily managed with a high protein, complex carb diet along with a cornstarch therapy.
My biggest concern going home was that feeding tube. This wasn’t in my plans for a child and it didn’t look like it was coming out anytime soon in the hospital. I had to take classes to know what to do and how to change it or reinsert it if it was accidentally pulled out. Before we were discharged, I had to assist in changing his tube. Let me tell ya that was one of the worst moments for me. But our nursing crew on the 6th floor was phenomenal and so encouraging. My biggest prayer became, God help Gideon eat and we don’t need that feeding tube and I don’t have to change it at home.
Near the end of our stay, my parents came out as they had the trip planned prior to our admission and thankfully we were able to get a room at the Ronald McDonald House. Acelynn loved it with all the animals there. Joel and I were able to take Acee out to the aquarium one afternoon while they got quality time with Gideon.
As Gideon gained weight and strength, we started talking about his blood sugar issues and what was causing it. To this day we still don’t really know why. His endocrinology team decided that it would best to start Diazoxide. The one major side effect they warned us was – hair growth and we got lots of hair and dark hair. And we had watch the fluid around the heart as that was a potential side effect as well. We decided with our doctors that this was the best route to take and so we began that route. Gideon’s sugars began to get into right order and where they need to be. He also began to wear a continuous glucose monitor (CGM) – it wasn’t my favorite thing as Gideon’s issue was drops not highs which is what CGMs monitor the best. But it was better than the constant pokes for his poor little toes.
Gideons last “test” before leaving was passing a 12 hour (if i remember correctly) safety fast. He had to prove that he could maintain sugars. And thankfully he passed with flying colors and even ate from a bottle at the end for a bit. Which gave us hope that maybe the feeding tube would come to an end sooner than later. We just had a very stubborn boy.
After all the hoops, at home things set up, and a safety fast, we were finally discharged and able to come home. Relief was there but so was the unknown of the future. How would life go without the team on the 6th floor. The nurses we loved so much that had become family.
All we knew to do was to breathe and watch what God would do. We left with a feeding tube but prayed Gideon would start drinking from a bottle. Guess what – within a week he was eating from his bottle. We started seeing more and more wins on the medical front and watching God move.
Called In The Chaos 