Friday Bella had surgery – kinda. Not what I consider surgery - there wasn’t a lot of cutting going on, but she was put under and that’s a big deal. The ENT checked out her ears since no one has ever seen them. I assumed that with all the meds she is always on, this was just a normal, she has DS, let’s just be sure, kinda thing. Well, I was wrong. Her poor ears were full of thick, green mucus. She is now supporting a pair of tubes. OK. Antibiotic drops for three days and future precautions against getting water in her ears. The good thing, the doc said, was that now we will know if she has an ear infection – junk will drain out of her ears. Great. At least we’ll know.
Waiting for the docs to get ready back in post-op. They had us wait here because of the vent and pulse-ox.
Then they did a DL&B – they did a scope of her larynx and of her bronch. Throat showed normal anatomy, except for one little thing. Where her trach was placed, it pushes on soft cartridge. Before she is decanulated, they will have to remove a small section of cartridge that is currently obstructing about 50% of her larynx.
Down to her lungs – below her trach, the area is red and had lots of mucus. They did a salt water wash to clean things out and catch a few cells. Further down they discovered that her anatomy is slightly different than the average Joe – didn’t surprise me. Bella always does things her own way. He also saw that her airways are very spastic and when they have to work (they took her off the vent and made her breathe), they will become spastic and then collapse. He said that she’ll sound like she’s wheezing – yes, she does. So the hope is if she’ll ever grow, that her lungs will grow and the cartridge will get stronger. Also makes sense why she loves her vent- positive pressure keeps those airways open!
She came out well. She took one look at her hand with the IV and shook her head NO repeatedly. She was really tired and wanted to be held – but the important stuff – breathing, her heart still beating – that was all good. Mama earned another ulcer.
On the way home, she just wanted to be held. We couldn’t of course, so her sweet nurse sat on the floor of the van and held her hand next to her face the whole ride home. I was grateful. That pathetic, I don’t feel good look just breaks my heart.
Later in the evening she spiked a fever and turned bright red. She just wanted me to hold her all evening. We gave her Tylenol and Benadryl and by this morning, she is her normal happy self – albeit the fever continues.
Its nice to have some answers! So its not necessarily PH that is making her need the vent so much! She does look so sad in the car!
Poor baby! I'm glad she got tubes and lots of answers! I just read your last post about her swallow study results!!! Awesome news Bella!
What a sweetie...we are having similar procedures done next week. We are overdue for an ear tube replacement.
Sweet love.Always something isn't little girl??
But in true Bella fashion,you rebounded like the trooper you are!
Sending love and prayers and Christmas Blessings to you all!
Lots of answers but I sure understand the ulcer!
Post a Comment