One Step Forward, One Step Back - 11/3

Another surgery has come and gone.She has no idea what's coming.

We arrived at the hospital yesterday, dressed our little (if you can describe someone with chub as little) baby in a hospital gown and matching pants, and once again said goodbye at the OR door.

Pre-op cuddles!

The GI doctor was the first to come talk to us. She said the endoscopy went well and that she didn’t see anything that looked out of place or damaged more than would be expected on a baby with a G-tube. She also took several biopsies which would cause some small amounts of blood in Averi’s stomach for several hours.

Next, the audiologist called us. Averi’s ears were cleaned really well and tested for fluid. No fluid was found and they performed another hearing test. As we already knew, her left ear is completely fine. Averi’s right ear, however, didn’t respond to the stimulation at all. Her hearing loss is so bad in that ear that hearing aids won’t help. The ENT told us later that we can do a scan in a couple of years and have the option of using a very unique hearing aid that amplifies the left ear’s hearing to the right side. He also explained that unilateral hearing isn’t going to slow her speech development, she’ll probably sleep on her good ear to drown out noise (she already does), and we won’t really notice it in everyday activities, just when trying to whisper or talk in a loud environment.

Finally, Averi was sent to recovery and Dr. Wiet, the ENT, came to tell us that the laryngeal cleft repair went well. He cut the edges of the two sides, so they would heal to each other, and then stitched them together. He also found that part of her reflux problem is due to the fact that her esophagus never closes all the way at the top of her throat, allowing food to come back up easily. This is something that may need to be repaired later, after she heals and we see how she handles oral feeds.

Right after surgery (not so happy).

Both doctors also realized that Averi’s reflux would irritate and damage her healing throat so they decided to put in a GJ-tube. It is a tube that goes into her stomach through the same hole as her G-tube but then extends past her stomach into the first part of her intestines. This will keep her stomach empty so that nothing can reflux up and do any damage. It was placed this morning and I can already tell that it is going to be a pain. Her Mickey button was taken out and replaced with another peg tube, the kind that sticks straight out from her stomach. This means we are once again limited on what clothes she can wear and there is no medicine port. It is also quite cumbersome because two different companies make the tubes and there is a large adapter piece in the middle of it. It is a smaller tube so it has to be flushed several times a day and when it comes out we have to go to the hospital to have it replaced. Hopefully it will only be a temporary obstacle, lasting only 4-6 weeks.

Her breathing sounded bad when she first got out so they gave her a breathing treatment.

Averi is recovering and cries anytime she swallows, coughs, or cries (it’s a vicious cycle). You can tell when her Tylenol starts to wear off and she is still on an IV but the doctors will be in this afternoon to check on her and we should be returning home by tonight. Imagine that, a one night stay at the hospital!

Day 2: Still really puffy and sore but asleep for a few minutes :)

Sometimes I feel like we are finally moving forward just to find out that, as the ENT doctor told us as he walked in the room after Averi’s surgery, “Well, she has a lot of things going on.” I know that one day this will all just be a memory, but for now we must simply persevere. Thank you for all the prayers you have and will continue to send our way!