Friday morning we took Brooklyn to daycare and Taylor to Jeff’s parents house (it would have been so much more difficult to go through this without them here – we are forever grateful!) It was about 11am by the time we arrived, we stayed and updated his parents about what we knew.
When we arrived we met our new nurse. It turns out she is related to one of the teachers at Brooklyn’s daycare. Small world!
It was a pretty uneventful day. Morgan was placed on a fentanyl drip because she wasn’t ready to come off the ventilator, and her pain needed more consistent management. I was pretty wary about this but seeing her in pain was awful – and that is the one thing I don’t want for her.
We asked the nurse practitioner about how Morgan would react when they stopped the Fentanyl (It’s a pretty strong narcotic). She indicated that the step down would be possibly morphine or oxycodone – depending on how bad her pain seemed to be. Really? My kid is going to be a drug addict! And to think I pushed through (literally) a natural childbirth to avoid all this in her body… guess it’s a good lesson on “planning”….
I shake the idea out of my head… I’m not going to focus on that… these are professionals and they are doing a great job, I need to trust them.
Jeff and I stay during the day with not much development. They indicated that they would start testing her again that evening to see if she does well with her breathing. Also, they are talking about taking out her chest tubes – she isn’t draining much fluid any more.
They removed the foley catheter (yay!) as well as the rectal temp sensor. It wasn’t much, but we were happy that there was SOMETHING removed from all her support!
“Once we remove the ventilator you’ll be surprised at how fast everything else goes away…”.
That sounded great. I couldn’t wait to hold her again!
Around 5pm we talked about heading out and picking up the girls. As soon as we decided it was time to go Dr. Spence, the Geneticist, came into Morgan’s room.
“Morgan tested positive for q22 deletion – known primarily as DiGeorge Syndrome”
It’s funny how this didn’t really phase me. From what Dr. Spence said in or previous meeting on Tuesday having this chromosome deletion explains the heart defect that she has, but it doesn’t necessarily mean that much more issues could come of it. The spectrum of this syndrome is pretty big. In fact, many people go undiagnosed until adulthood because there are no major symptoms. Many of the “symptoms” are shown as behavioral problems or learning disabilities.
I felt sort of relieved – it all made sense then. The reason they tested her for this syndrome was because she had Truncus Arteriosis. There are many other problems that can be present due to DiGeorge. Hypoparathyroid disorders (causes calcium problems in the body), T.hymus issues (low T-Cells to fight off infections) among other issues regarding behavior and development. But I could live with this. These issues can be managed. It didn’t seem as scary as the heart defect. That was life or death…. not simply an inconvenience.
Morgan is truly our special child. God definitely sent her to us for a reason. I love her SO much – and it seems even more so because she is so special…