September 16: Day +76

Heaveno!

Well, the trach is in, and Bella is fine.

I got in at 7 and got to work prepping Bella for surgery. We had planned everything out pretty well the night before, so it worked out quite smoothly this morning. We headed down to surgery, and Dr. Rimell and the entire staff were extremely accommodating and appreciative of my input and willingness to help. I suppose they aren't used to parents who are so hands on (literally) with their kids' diseases/injuries. Anyhow, it didn't take nearly as much finagling as I thought it would to get Bella positioned just right. A few modifications to their normal setup and we were ready to go. Normally, they use 1/4 inch tape and tape the patient's chin to the bed by craning their head back, sticking a roll under their shoulder blades, and taping the chin over the patient's head to keep the neck exposed. We stuck mepilex transfer under her chin, then used mepitac tape instead. This diffuses the pressure by spreading it out over the 2 inches of the mepitac.

I left while they did the draping and cutting, and was brought back in not too long after I left. That's a good sign, because it means the surgery went smoothly. I got out the pieces I thought would work, and thanks again to the help from Courtney Roth and John Neikens, both EB parents of kids with trachs, we dialed everything in quite nicely.

For those interested in how we dressed her exactly, we placed a 4"x4" mepilex Ag sponge under the trach. We put a light mix of aquaphor and zinc oxide on the sticky side so it would slide into place. For the spot where the mepilex fans out under the chin, we placed a 3"x2" piece of mepilex transfer underneath. This way, no part of the trach touches skin. For the collar, we took mepilex transfer, cut it into two 8"x2" strips, and then placed sticky side to sticky side, so I could adjust it if necessary. I made two of these. It started under the mepilex Ag, and wrapped around the back on each side, so it overlaps in the back. Then we used an adult posey tie which velcros to the trach in front, wraps around the back, and velcros around the back as well. Finally, we used a vent anchor to attach the vent to the trach. It is also a soft posey tie that works exactly the same way as the trach collar. A gel pad between the shoulder blades combined with one behind her head where her pressure ulcer is creates a pocket of space for the collars in the back to get air. It worked out better than anyone expected.

Funny, I bet God was never worried about it all. He can see what we can't. I am humbly reminded of this after reflecting over how much anxiety I had over today, compared with how effortlessly the day went. What a great lesson to be taught again and again and again...

We were back in our room by 9:30. We went back on Prisma by 11:30. While Bella rested with Lori her nurse, Angelique and I went to lunch and coffee and spent some quality time together. It is nice when we get the odd chance to just be together, just the two of us. The rest of the day went smoothly; Bella's pressures were a bit low after going back on Prisma, so we had to give her some fluid. We really weren't too worried about it though. To have surgery and a circuit change is a big day, and as long as they went well, dealing with low pressures with a little fluid was fine.

Now, we let Bella heal for the next week. Once the trach is healed, we can then turn down the sedation and wake her up. So, we'll be taking it easy for a few days before any action occurs. That's fine. We'll see if we can sneak off any fluid between now and then. Wish us luck. as you can see, Bella looks like she's gonna POP at this point.

Thanks for all your prayers, thoughts, wishes, and intentions. We really felt the power of your support today. It was a good day.

One day Bella will look back and say, "Yeah, I was born with this rare condition, but when they brought me home from the hospital, it went away."

God night.