Day 116 - What’s A Spell?

April 25, 2021

Sunday, April 25, 2021

Morning: James wanted to break Dad in last night and this morning and make sure that he gets a taste of what Mom gets to experience daily. James had spells almost every hour.

What’s a Spell?: Heart rate drops to 80 or below. Oxygen drops to 80 or below. James holds his breath and turns red, sometimes purple. He sometimes has tremors with his arms. He cries silently, and sometimes makes yelps through his trach. Imagine watching a baby choking...that’s what the experience looks like.
Dad asked the doctor this morning what are the long term ramifications of these spells. Her response was that there’s not enough evidence to show that short spells (a few minutes) have any long term affects on the Baby’s development. She said that longer spells (upwards of an hour) could lead to some issues and challenges. Luckily, James has been recovering from his episodes fairly quickly. It’s usually several minutes.
Unfortunately, these will continue to happen while James lungs continue to develop. The challenge is that James has normal baby tendencies but his lungs aren’t equipped to handle them due to his BPD.
For example: A wet diaper triggers many babies to cry and want to get changed. So, boom...James cries and wants to get changed. However, the initial crying triggers a BPD spell and sets James into a frenzy (outlined above).
The doctor gave James a gift today. A little pacifier with an elephant attached to it. It’s called a WubbaNub (weird name) and it’s so cute!

Afternoon: Dad observed another trach care session and tie change. The more he observes, the more comfortable he becomes. Dad is quite anxious and nervous around this and will need to practice on a doll several more times before attempting on James. There was going to be one available at the NICU for him to use, but it hasn’t been. So, Dad will be buying one with a neck and putting a hole in it to get some practice next weekend. As he was explaining this to the nurse last night, Dad wasn’t able to finish his explanation due to not being able to hold back the tears. There’s some trauma Dad will continue to work through with his Life Coaches to be ready and prepared for when James comes home. It’s all new and Mom has been doing an incredible job during this journey, making things look way easier than they actually are. She’s inspiring. 👼
James was put in his Bobby, his swing, and tummy time to get him into different positions that he can attempt to get comfortable in. Each shift requires several diaper changes, so Dad has now changed several diapers in a row and now losing count. (He was at 12 lifetime diapers).
James is finally comfy on his Tummy. Listening to some Baby Mozart and reading his shapes book. 📖