Adenoids and Ear Tubes

I’ve been waiting to update about Eli’s surgery so I could keep all emotion out of it.
If your child has had their adenoids removed, you know what I’m talking about. (Or any surgery for that matter)
Surgery is hard. It’s hard to take your perfectly healthy child to the hospital knowing that they are going to wake up miserable and snotty.

Surgery day had anxiety but it did go well. Eli’s breathing obstructed when they initially put him under. It was one of my fears especially with anesthesia. Our doctor wasn’t super concerned and it never happened again but it may mean that we go for another sleep study soon.
His adenoids were only partially removed because his palette is weak and removing too much of his adenoids would cause more speech issues and damage structural support.
His inferior turbinate was small, so she widened that while she was in there and placed new ear tubes.
His left ear was still functioning fine but she cleaned it and replaced the tube. His right ear was a problem- the original tube had been pushed down into his ear. The eardrum healed with the tube inside rendering the tube useless and his hearing poor at best.

We believe this happened in the course of taking him to a different ENT for regular ear cleanings. But whatever the cause, we now know that his tubes are functioning and his ABR revealed better hearing results then the first time. His levels are within normal ranges! This is obviously what we have been praying for and we are anxiously awaiting to hear more words from him.

So here’s our adenoid surgery recovery story-
His waking from being out under was a little more difficult than the last time.
As soon as I saw him, I knew we would be staying over night in the hospital. Barry held him and he just thrashed around and moaned. The nurse hovered a lot and ultimately told us that his pulse ox wasn’t where she wanted it to be. (Stayed around 92 but did fluctuate).
The kicker- We caught a cold at the hospital, so in addition to major surgery, he was sick.
No one could seem to get him to want to drink much and we discovered that he needed a stronger pain medication.

The hospital stay was as unpleasant as any other hospital stay- plus we had Wyatt with us. Eli was so uncomfortable and we were being monitored so frequently that no one really slept. But once they were satisfied with his pulse ox and fluid intake, they let us go home.

Once we arrived home, it was clear that Tylenol and Motrin were still not going to cut it. We got Eli on his steroids and a codeine/Tylenol blend with Motrin alternating. It never seemed to touch the pain. Before the 3 hours was up, we were all desperate for him to take his next dose.
He barely ate and was living off applesauce.
His nose was so clogged that he couldn’t breathe and his throat was very sore.
Naps and bed time were a nightmare. He was so scared to go to sleep that the only way he would even try to sleep is when he was being held or when my husband slept in the room with him. He would reach his hands through the bars of his crib and hold my husband’s hand or hair. 😦
His nose was constantly weeping- first a pink/yellow liquid, then later to a thick yellow mucus.
When we got home, we were hoping that he would perk up, but all he wanted to do was moan, cry and lay around. In fact, we were so worried that first night, that I almost took him to the emergency room.
By the third day, we had him on antibiotics and all the typical “sinus infection” treatments you can think of. His poor nose was raw and bloodied on the outside. 😦
By the fifth day, we began breathing treatments and the rotten dragon breath had peaked. All he wanted to do was snuggle and moan.
After a week, he was still needing pain meds and we were beginning to regret our decision to have the surgery. It’s so hard to see your child in pain and for him not to understand why.

On the upside, he was trying very hard to make new sounds and seemed to be responding better to noises.

Week two, the snot prevailed and we got off pain meds. When he spoke, he sounded very nasally but he was beginning to look a little better. Less puffy and more interested in food. He was still mopey and very tired all the time. Most mornings, he slept until 8:30 or 9am (which is odd considering he normally wakes between 6:45 and 7).

Week three, we still had snot but it was finally beginning to clear up in color. He had his first speech session since the surgery and it was quite successful. He participated more than he ever has in the past but he still sounded nasally. He went from making “b” and “d” sounds to making “m”, “n” and “l” sounds.

Week four, we are currently in. He is completely clear and doesn’t sound as nasally- I almost don’t notice it at all. He’s working hard to make new sounds and he’s back to his happy self. He seems more alert, especially upon waking. It’s as if a fog has been lifted. He’s not as puffy and generally appears more well rested.
He’s eating and drinking normally and happy as can be.
I feel a sense of relief now that we are a month out. We had begun to doubt our decision but now it seems like there was never any other option. We are happy with the results and looking forward to more progress.

Everything we researched and heard about this surgery said it would take 5-10 days to fully recover but that typically after a week the child is back to their regular life. For us, it took about 2 weeks to see some improvement and a full month before he was back to his regular self.
Our ENT joked that we should never remove his tonsils (and I hope we never have to) but this was just how long it took Eli to heal. I definitely think the cold prolonged the issue and I don’t believe that his having Down syndrome had anything to do with it.

I hope that this will help someone else looking for more information on this surgery. There are plenty of great resources but there just weren’t personal stories out there like ours.



20121121-122122.jpg20121121-122133.jpgYesterday we attempted his repeat ABR but were sent home because there was a discrepancy about the last time Eli was fed. Grumble grumble….
Today we tried again. It was a bit better but I still hate the process. Starving him and depriving him of sleep is so hard. :/

He woke up 30-45 min into the test but the audiologist got enough info to make a recommendation.
Basically he did better today than last time and responded better. In her opinion we cannot rule out permanent hearing loss yet, but the results indicate its much more likely his loss is due to small ear canals and fluid.
It also means he can certainly hear (although not clearly) and that decongestant is working. (He sounds much much better and less snotty) Praise God!

The flip side is they want him to hear as clearly and quickly as possible. So we fitted him for hearing aides.
Which means I cried.
I cried because I don’t want Eli to have something that makes him more different than he already is. Not to mention its a bit overwhelming to fit your child for hearing aids when you originally only came in for a hearing test.
But it’s more important for him to hear than my feelings about how aids look.

The audiologist thinks they will be temporary until he is big enough for tubes. Once he has them, they will repeat the ABR to check for improvement. Until then we just wait for those ears to get bigger and go from there.

She recommended some brightly colored aids but we went with something a bit less…neon…and noticeable.

The official report:
“Mild hearing loss bilaterally. The presence of bilateral middle disorder indicated a conductive component. A mixed hearing loss cannot be ruled out at this time. Ear mild expressions were taken and hearing aid selected. PT to return for hearing aid fitting in one month and follow up ABR in three. Also recommended continued medical management of middle ear disorder.”

Now we are just praying for the fluid to continue to drain, his ears to continue to grow and for an easy transition off the sedative.
We had his sleep study scheduled for the end of January, and if it shows any apnea, the way his ABR is performed will have to change. So continuing to pray for that. God is able and has worked so many healing miracles in Eli already!

What else is new? Eli is weight bearing very well through his legs, he’s reaching for people and things, he’s sitting better and better each day. He’s doing amazing honestly! We have one more session with our old OT and hopefully getting our new one by the first of the year. So sad to see her go but she will be able to help so many other kids at her new job. We know we will get another OT that’s perfect for Eli. 🙂

We started using hip helpers (he wears the tiniest size and they are adorable lol) to work on 4 point and Pre-crawling.

I guess that’s the update for now. Excited to celebrate Eli’s first thanksgiving- so much to be thankful for! Thanks for your continued prayers and for following along! Enjoy your holiday!

ABR Update

Just got off the phone with Eli’s ENT. Basically she confirmed what thought the audiologist suspected- the majority of the hearing loss is likely due to fluid.
It doesn’t help that he has low muscle tone so his ear drums are likely floppy. And they are tiny which could also block some sound.
It could also be *some* nerve damage just due to the fact that he has Down syndrome. :/

ABR’s are typically repeated to get a better idea of the whole picture. So it’s not terrible that he needs to repeat.
If he has nerve damage they will fit him for hearing aides until his ears are large enough for tubes.

She said she was surprised about the left ear being better since she thought the right ear looked physically better at his exam. Which is also a characteristic of fluid. She also said he’s babbling and very vocal- all good signs. She didn’t seem worried overall and said this was a very good plan of treatment.

So we will retest in 3 months and give him his decongestant before the test and see what those results are. If the results are similar it could indicate nerve damage but waiting 3 months won’t change much of anything at this stage.

It made me feel a bit better but I’m definitely anxious. I don’t want to add more to what makes him different and I want to help him so he can hear better.

All in all mild to moderate hearing loss isn’t the worst case scenario but it makes this mama bear puff up.
Please just pray that little man can start sprouting up and that his ears will open up, drain and grow.

Types of hearing loss: and .