Picture Essay from Bella's G-tube Insertion

Hi all!

Tonight's post is a little unusual. I am posting all the pictures from Bella's G-Tube insertion back in October. There is another EB Baby having one placed at the end of the month, and the family is not as lucky as we were in that their hospital doesn't have 30 years of experience operating on EB babies. So, we took tons of pics during Bella's procedure to share with the community. Originally, we took them to share with our local hospital, CHOC (Children's Hospital of Orange County), so CHOC could develop an EB surgical team, but then I got busy. At least all this work can now be used THIS MONTH somewhere else in the country, so it wasn't all for naught! Here we go:

Items to assist in securing intubation to face. I believe that is vaseline infused gauze.



Front of their EB cart that resides in the O.R.

How awesome is is that they have a dedicated cart???

Top of cart had supplies prepped for surgery. Here's a sneak peak at what was underneath... First up, bottom right corner.



Top right corner



Top left corner

Bottom left corner

Bottom Drawer... EXPOSED!



Specialty Dressings... UNDRESSED!

Dressings Drawer... what would be witty right here?

Wound Care Team. We convinced them to let us do Bella's bandages while she was under sedation. They were a little hesitant at first, but we apparently appeared "on it" enough to get access to the O.R. It was AWESOME. Ang and I make a really good team. The O.R. team was really impressed. That made us feel really good. That's a pretty qualified opinion!

Bella going under. Mask was covered in aquaphor before placing on her face. I sang to her during the process her Birth Song, and I didn't even get to the chorus before she was OUT.

Close-up of intubation set-up. There were no injuries to her head, face, mouth, or esophagus as a result of the procedure. Good job, docs!

Different view of head dressing. You can see the foam pad and air pillow better from this angle.

Close-up of surgical site. Incision was made for G-tube as well as second incision to anchor it about two inches to the center. Mepitel was glued over surgical incision and stayed on for several days. No harm done, scar healing nicely. We now use mepilex lite under button to protect against friction and absorb any drainage as the opening healed. It oozed stomach juice for several months at a slowly declining pace until now where it hardly oozes at all. We still clean the site daily with a Q-tip dipped in 50% water 50% hydrogen peroxide. the dark spot to the outside right of the button was a blister she had going in to surgery that was totally unrelated and ended up healing fine with no scar.

Little cherub out cold after surgery back in her room. Notice the IV placement was in the right foot, and yes it is a bitch for EB kids and yes they deliberated long and hard over where to do the IV. They did not use sutures to secure the IV, although (pardon my french here) an ASSLOAD of that gummy wrap you see above was used over a CRAPLOAD of rolled gauze to try to keep it in place for as long as possible. We had to do a cranial IV the week prior at CHOC (had to do three different placements as it kept coming out due to Bella being a squirmy (read: normal) baby. That SUCKED. Each placement took like 4 of us and never got done in less than 2 hours. Ugh. THIS was MUCH better. It stayed in till it could be D/C'd . How did it NOT get yanked out, you ask? ...

...because the poor girl was tied down for the next 3 days practically! No joke. Look at how each appendage is secured so that she won't a) wreck her IV and b) wreck her new button. She was a trooper through it all. Didn't hurt that we kept the happy drugs FLOWIN'. No time to be puritan about pain meds as discomfort causes maximum squirmitude. Yes. That's a word. No. you can't use it in scrabble.

Here's the little trooper recovering well enough to have her arms released! (how nice of us, I know) I recommend lite under the button rather than mepitel as it often (as was the case here) got stuck to itself and would bunch up easily. Double sided tape will do that to ya!

Alright, I hope this helps those of you who are either considering this procedure or preparing for it. It was the BEST THING we've done for Bella to date. As Dr. Eichenfield, the eminent Pediatric Dermatologist in San Diego and resident expert on EB said to us,

"The key to EB is nutrition, and the key to nutrition it the feeding tube."

Before the tube, we STRUGGLED to get 20-24 oz a day into Bella, and I mean STRUGGLED. It was awful. Feeds frequently took 90-120 minutes and had to be timed so that Bella was dozing in order to tolerate the bottle. If she was too alert, no deal, and if we waited too long and she fell asleep at the beginning of the bottle, no deal.

After the tube, we got 30-36 oz a day into Bella without so much as a whiff of trouble. Any time she couldn't or wouldn't tolerate a bottle, NO PROBLEM, snap that tube into place and go! Late night feeds were done without having to wake her. That was awesome in and of itself! But most importantly, we got her caloric intake up above what her GI doc and nutritionist wanted, and feeding became fun again! No more knock-down, drag-out bottles.

Now, 6 months later, Bella is 90th percentile in height and weight and 110% Weight to Height ratio, which is RIGHT ON for a typical child at her age. In other words...

SHE IS THRIVING!

We are extremely blessed that all is going so well, and that all went so well with this procedure. We recognize and give thanks that we have walked through the Valley of EB with a lot of success to date, and do so humbly in the memory and in the face of so many other EB kids who haven't fared as well. We take our successes with thanks and humility with full understanding that at any moment it could all change for the worse. EB is like that. Every day is a gift. Period. Thank you all for walking the journey with us. If you are reading this, you are walking this journey whether you realized it or not. We see you there, we feel you there, and we give thanks that you are there. You lift us up when we are too tired. Thanks for that.

Blessings,

Tim