In the Beginning – Part Four
Update Week 4 from Becca
Aidan was supposed to have surgery today to insert a G-tube and tie up a bit of the top of his stomach to decrease the reflux. This didn’t happen. Last night the docs took out the NG tube and hooked him up to an IV in preparation for the surgery. His O2 saturation levels dropped 30 times (this means his breathing wasn’t stable enough but we had become so used to alarms going off and lips going blue. whatever) Too many to do surgery today. He now has some assistance with breathing but he is NOT on life support. The docs are now even more stumped as to what is going on with him.
The nurses surrounded H+G and made them talk to the doc about transferring Aidan to Boston. Nurses are sooooooo smart. (I remember trying so hard to get the courage up to ask for a second opinion and not caring if it wasn’t covered by insurance. We approached the doctor and before I could get the words out, he said he wanted to send Aidan to Boston.)
The tyrosenemia does not seem to be making much of a difference with him. Some good news is that the Prader Willie results came back negative as did an EEG and brain scan. This still does not mean he is cleared neurologically. (Now THERE’s an understatement) Our boy remains a mystery.
Heather and Garreth continue to remain strong and hopeful. Garreth is going back to work 4 days/week and Heather and Liam may spend some time at home. (We recognized that we were so fortunate that Garreth’s work was incredibly flexible with his time. His co-workers even donated time off to him. So humbling.) This is obviously going to create a great deal of heartache for H+G in terms of being away from Aidan.(Yes, I had to choose between my children and it was horrifying.) Liam is really needing his mom, dad, and structure back. This will be the first time in 4 weeks for Heather to return home.
I definitely remember this trend of whiplash – Aidan’s fine, he’s not fine, no one knows what’s going on, but he’ll be going home, no he can’t go home……..
I also remember forgetting how to drive in the snow…really. I was co-hosting a Pampered Chef show at a friend’s house. I know it sounds crazy but people around me were smart enough to know I needed a break from the hospital and some distractions. I also needed to go because Liam would be staying with my friend. I got about 1/2 hour away from the hospital and pulled over to call Garreth to come get me because I couldn’t drive. He had to get a cab to rescue me and I’m pretty sure he also had to borrow money from someone to do that. If. like Garreth, you don’t want to continuously borrow/spend money for transport, why not look into purchasing a new car, with, for example, a source: Intelligent Car Leasing. They will help you find the best deals for you and your car, as well as saving you money.
We drove back the the Ronald McDonald House in Portland. Looking back, it absolutely wasn’t because of the weather. My sister drove 1 1/2 hours to come and get me and bring me to New Hampshire for the party. She got a knick in the windshield of her new car that always reminded her of Aidan and the craziness of that time.
*This is the story of Aidan’s first few months. It starts here. My present day thoughts are in bold print.