I'm home! Just under 6 hours on the road and all for a 20 minute appointment. Seriously, I had a 3pm appointment in Tampa and I was back in my car at 3:20! Wow! I'd say that's awesome and wonderful, but it does kindof stink that I drove 2 1/2 hrs to get there for a 20 min appt and then had to turn around and drive home. Oh well.
So... Emma has a new diagnosis- obstructive sleep apnea. The ENT felt safe diagnosing her without a sleep study based on his inability to see down her throat. He said that not only does she have huge tonsils and OSA, she DEFINITELY needs it taken care of before any surgery that requires intubation because they are severely obstructing her airway and intubating could be very dangerous. I presume he means that after intubating often times the throat swells and it can be dangerous if an already small passage swells because then you can't get the tube back out. I presume.
Also, contrary to the other ENT's opinion, this guy doesn't want to do an ABR after putting in tubes. He explained something which makes a LOT of sense, and it makes me wonder why everyone has ABR's done after tubes if this is the case? Seems like people would all get a false read?? Here's what he said- if you go to a rock concert then right after you can't hear as well. There are even lingering effects that make it so your hearing isn't back in tune completely for a few days. So... after having the fluid removed with an instrument that will make a "drill like sound" in her ear, her hearing will be similarly affected for a few days. Doing an ABR would give a false-low and what you end up with is fitting a kid for hearing aides that has no problem hearing. Instead he suggests just doing another field hearing test a few weeks later and if necessary a sedated ABR on down the road a little bit.
Emma has a lot of fluid in both ears and the ENT says that YES, it's affecting her hearing. No question of why she failed her OAE (hearing test), it's from the fluid first. I said "wow, she's on antibiotics right now and tomorrow's day 10" and he said "yes, a lot of good that's doing, right?" It is keeping her from having an infection, but the fluid isn't clearing up with the infection. Hence the tubes.
She also is having another test added on, and that's a swab of the sinuses. He said "I want to swab her sinuses while I'm in there" and I said "ok." I didn't even think to ask why. I don't suppose it matters. Maybe he wants to know what sort of Ukrainian gunk she brought home? I don't know. Don't care, he'll tell me if I need to know I guess!
And lastly, the fun stuff. No schedule yet because they have to get cardiac clearance before they'll schedule it. Hopefully clearance will be given tomorrow and scheduling the surgery will happen either Fri or Mon for next week or the week following. HOPEFULLY. And, the joyful part of the visit, or not, was that he made sure to make a big note on Emma's chart and specifically tell the nurse that goes over the operation procedure that there needs to be an S-ICU bed with Emma's name on it before he will start surgery. I guess that means she'll be in the ICU for a little while. I did think to ask how long... um... not sure. At least a day, or a few maybe, depends on how she recovers. And she'll be happy to know that she can't have any solid foods right after surgery, liquids only. Poor thing, she'll be on her same diet for a while ;) Her surgery will be done at All Children's Hospital in St. Petersburg. The ENT prefers the intensivists at that hospital to the ones in Tampa, though he works with both hospitals. That's fine with me because that hospital is 2 blocks from the Ronald McDonald House (RMH) whereas Tampa is 30 min away. So it makes life easier for me to have it at ACH.
Anyone know what the S in SICU stands for? I can't find it even on the ACH website...
Probably Surgical ICU would be my guess.
ReplyDeleteI just wanted to say that my brother lives in Lakeland and swears St. Pete Children's Hospital is the only place he would take his kids for any hospitalizations. They are supposed to be wonderful there!
ReplyDeleteYep, S is for surgical. They also waited to do Sarah's sedated ABR until a later date after having tubes and tonsillectomy. The reason was the fluid in the ear and it affecting her hearing. On our follow up she failed the hearing test, to no surprise for the ENT who said her ear canals were too small, so we will have a sedated ABR in a few weeks. We were told with Sarah that a pacifier would help after the surgery with the throat swelling and help her to eat/drink faster. She did not use a pacifier prior to surgery, but she did the second day after surgery give it a try and really likes it. She did do much better after that point. She was also on a straw and totally refused a sippy cup. Did not try a bottle. She began to eat soft foods before she really began to drink and did not drink until they finally let us use the straw cup that she was use to at home. She is funny about what she will drink from! We will be praying that Emma's surgery goes great and she starts drinking fast and does wonderful. Also don't know if they told you, but about 10 days after surgery the scabs come off. This seemed to be the most painful time for Sarah.
ReplyDeleteRobyn
Sounds like a GREAT doctor! I think the recent standard of care after a T&A is ICU with kids with Ds. Darah went to ICU and only needed the one night stay and we went home. Hers were not very enlarged like Miss Emma's, though. I will pray for a fast and speedy recovery for Emma! I hope this gives her the relief she needs and helps the PH. I'm waiting to see if Darah's T&A helped her PH at all, but haven't noticed a improvement in her sleep apnea at all, so doubt we're going to get a good sleep study report...which means we're headed to being more diligent with that stinking CPAP! Oh, I think I wrote a book! Sorry! LOL!
ReplyDeleteSICU is Surgical Intensive Care Unit.
ReplyDeleteSounds like you found an excellent doctor! Thank God!
ReplyDeleteI hope you get a date soon and get it done quickly and successfully!
Hi Meredith,
ReplyDeletemaybe you've found the reason for her overly developed accessory respiratory muscles (sternocleido-mastoids) in the front of her neck?
It's so gratifying to see her getting such good advocates! Lucky girl.
Goes to show that faith and prayer really work,
Wishing you all the best,
Gudlaug