On Friday, the surgeon came in and removed her drains and dressings and I got my first look at her sutures. On her neck, she has a long lateral incision that looks like a smile (how appropriate!). On her chest, she has a small incision where they removed her rib. The surgeon did a beautiful job with her sutures... I think her incisions will heal beautifully. Friday was great! Ellie was in a good mood, she was full of energy... and she was determined to climb out of the bed. I didn't leave her bedside unless she was sleeping because I was sure she would launch herself over the rails. Turkey.
Saturday morning, we were waiting on rounds and waiting on a time for discharge when I started feeding Ellie her breakfast. She was eating well and drinking like a champ through her straw. This is totally gross, but I leave her HME off of her sometimes to allow her to work on coughing up any secretions she has. She'll need this strength when she doesn't have a trach... so this is good practice. While we were having breakfast (yes, I was eating what she wouldn't touch on her plate), her secretions were heavier and more frequent than normal... and the color of her formula. When I wiped them away with a paper towel, I inspected them (read: smelled them) to confirm that they were, indeed, formula. I called in the nurse and continued to eat while I waited. Yep... I'm that disgusting... I can wipe away sputum, smell it, and continue with my breakfast. My grossness tolerance has increased significantly since having Ellie. Ehh... what can I say?
Anyhow, when the nurse came in, I had him help with suction as I gave Ellie more formula to confirm what I'd already suspected. Bottom line: she was swallowing some formula, but there was a good amount that was leaking down into her airway. Fortunately, Ellie has the strength to cough that up instead of letting it settle into her lungs. I was certain this would mean additional testing and such before we could go home, though. I looked at her and said, "really, Gilligan??" I assumed we'd have to have a chest x-ray to see if there was any fluid on her lungs and we'd have to have a swallow study done before we'd get to go home... and I thought maybe we'd have to wait until a weekday for that. I was totally bummed as we waited for rounds.
The surgeon that assisted Dr. Elluru during surgery was in rounds to talk with us that morning and I sheepishly walked out, expecting bad news. Dr. Patel had none of that for us. He explained that the stent that they used covered the surgical site, and also covered her vocal cords (which we knew), but it came up high enough that it could cause the epiglottis to close onto the stent instead of onto the top of her natural airway. Since the stent has a tiny hole through it, if it wasn't making a tight seal, some liquids could leak through. This was to be expected. What?? He said to stay away from liquids (or add thickener) and she'd be fine with baby foods, purees, and other soft foods. We have to stay away from crispy foods anyhow, but he said we should be alright with soft things. So we waited a few more hours and went home Saturday afternoon. Awesome! Our best guess is that the airway was sealing just fine the first few days post-op due to swelling in the tissue surrounding the epiglottis. Once the swelling receded, the epiglottis started closing on the stent. That's the only explanation we could come up with as to why we didn't see it earlier in the week. [how many times can I put "epiglottis" in a paragraph, right?]
Saturday was busy... whenever we're discharged from the hospital we have to meet with our nursing companies to resume care before our nurses can start again... and we needed to pick up the things Ellie would need at home. Saturday night, her baby food was leaking from her trach during dinner... dang it. This is scary because the risk for things like pneumonia are awful when you have foreign things in your airway. So we called the doc in the morning and she's been put on tube feeds (with a few solid foods... think sandwiches) just to give her mouth the practice of chewing and swallowing. We only give her a tiny amount of food by mouth each day and the rest is given through her G Tube. Thank God for tubies!! (For those not familiar with medical jargon, "NPO" in the title of this blog entry stands for nil per os... Latin for "nothing thought the mouth"... since all medical jargon is in Latin and all.)
So Ellie is mad during mealtimes when she sits and signs "more" and "eat" at us when she can't really eat. Poor kid. We're keeping her belly full... but that's not the same as eating. This girl loves her spicy food and peanut butter. She's due back in the OR on 8/15 to have the stent removed. We should just have a short stay for that surgery. Let's pray that her epiglottis closes without issue once the stent is removed and this little beauty can go back to eating by mouth. I know we'll see regressions in feeding therapy... steps she's worked so hard to achieve... but hopefully not too much regression.
In short - we are home. We are working on packing and getting ready to move soon... so that keeps us busy while we're not at work. Ellie is mad about this food situation, but we only have 13 more days like this until she's free of her stent. Fingers crossed that all goes as planned!
This was Ellie on Saturday... waiting for discharge paperwork.
