Sleep Apnea Surgery

Welcome back! 

Figured it was time to dust off this blog and get it back up and running while we navigate this new journey to the Inspire Therapy surgery. 

A couple links on the study if you are interested:

http://www.sleepreviewmag.com/2016/05/clinical-trial-evaluate-inspire-therapy-osa-adolescents-syndrome-expanding/

Study Links:

https://www.ncbi.nlm.nih.gov/pubmed/29098288

https://www.ncbi.nlm.nih.gov/pubmed/31219619

As many of you know, Beau has always had severe sleep apnea. He had his tonsils and adenoids removed right before his first birthday. It was the WORST surgery ever. They couldn't get his pain under control and overdosed him on fentanyl in the ICU. He went into cardiac arrest. It was the scariest time ever.   http://alainakylestevenson.blogspot.com/2010/05/long-days.html 

We didn't know what else to do for the longest time until we met his neurologist, Dr. Ramey, and he got him into his first official sleep study. We found out he was having an average of 28 episodes an hour (where he stops breathing while sleeping). That averages about every two minutes he would stop breathing. He basically never got into a REM sleep. Which results in behaviors and energy issues during the day.

In 2017, from Feb to Nov his sleep apnea worsened after comparing two sleep studies. Neurology referred us to ENT in Spokane for more options because the CPAP wasn't working. They recommended tongue base reduction. We decided to head over to OHSU (Portland) in the spring and met a different doctor for a second opinion. He was leaning more toward a tracheotomy to be placed. Both options weren't something we wanted to do.

After a ton of research, we found a study they were doing called an Upper Airway Stimulation. The down fall was it was out of Boston and you have to be 10 years old to fit the criteria. Beau was only 7 at the time. We came to the conclusion that's what we were looking ahead to do.

Then Dr. Lam (who we are seeing now and our third opinion) heard about our case through his partner. He called us at the end of the 2017 summer and we talked for 45 minutes discussing Beau's situation. His research is sleep apnea in kids with Ds. He knew all about the Upper Airway Stimulation and his colleagues who perform the surgery. Long story short, once we met him he thought Beau would benefit from a lingual tonsillectomy and epiglottopexy surgery. This is the step before the tongue base reduction where they actually remove parts of the muscle in the tongue.The doctor scheduled the surgery two days later because he didn't want us going home his apnea was so severe. We had our follow up sleep study a couple months later and his apnea episodes were cut in half. He was only having 12 episodes an hour in 2017.

He turned 10 in May of 2019. We started to get the ball rolling again. Had another sleep study done in January of this year. Found out his apnea is getting worse again. He was up to 13.5 episodes. Anything over 10 is considered severe.  

To make it quick, Dr. Lam is now one of the few doctors in the country doing the Inspire Therapy study on kids with Ds. He hasn't found a patient that qualifies yet, so Beau may be the first child out of OHSU to have this surgery done. Scary but exciting at the same time. This could be life changing for him. 

We head over to Portland tomorrow. He has his scope scheduled for Tuesday. If everything looks ok, then we move forward with the surgery. There is A LOT of steps and paperwork that has to be done because it's still all research based. We have an appointment scheduled for Mar. 20 to see the developmental clinic. They want to follow him before and after the surgery to see if this will help developmentally as well. He'll also have to have 4 post op sleep studies done after the device is placed.

We just pray that everything looks good structurally on Tuesday and he qualifies for the surgery. We hope that if he does have the surgery that he will tolerate it well and it will help him sleep better. 

We've got a long road ahead, but we'll keep you all posted!

How Long Will Beau Need a Feeding Tube?

Will he always need a feeding tube?

I'd always answer with... We aren't sure. He'll need it until he can start eating enough calories by mouth.

On August 12, 2009, Beau went into his first surgery to have a feeding tube placed and a fundoplication done. He was only 77 days old.

(The goal of a fundoplication is to prevent stomach contents from returning to the esophagus. This operation is accomplished by wrapping the upper portion of the stomach around the lower portion of the esophagus, tightening the outlet of the esophagus as it empties into the stomach.)

Why have a feeding tube placed? He was only 29 weeks and 6/7 days when he was born. With being a preemie and having Down syndrome, it was a lot of work for him to eat. He wasn't eating enough to get us discharged from the hospital. The only way they'd let us go home was if he had a feeding tube placed. Being in the NICU for 99 days was enough for us! 

I can say now that it was a blessing in disguise. Little did I know, we'd need that feeding tube for A VERY LONG TIME. 8 years 2 months and 12 days for nutrients to be exact!

I'm so excited to say that it's officially been ONE WEEK since we've put any food through his g-tube. We've accessed his g-tube twice all week only to bolus him some water and that's it. He was getting a little dehydrated the first couple days because he wasn't drinking enough fluids. I feel that this may be the real deal. We've been close so many times to weaning him from the g-tube, but we've never gone a FULL WEEK with nothing. There's no going back now! We'll know for sure in three weeks when our dietitian comes back to weight him. Send the positive thoughts our way. 

This has been a LONG time coming!!!

How'd we finally get him to eat? 

A lot of consistent support! I didn't have the time to sit for 30-40 minutes every time he needed to eat. With the two other kids, it just wasn't possible. That is what he needed and now we have the help! 

He only attends school half days right now. Once he's home, he has ABA for two hours a day. The one on one attention is what I knew Beau needed from the beginning but finding that was near impossible. Once he received his autism diagnosis this spring, everything started to fall into place. I feel that we are finally at a very good spot right now for Beau and he seems genuinely happy for the first time in a long time.

Beau Update

We've been getting a lot of questions lately about Beau. Here's a quick update.

He had a ROUGH two weeks post surgery. He was in so much pain and refused to eat or drink anything. Thank goodness for his g-tube or we would've been stuck at the hospital keeping him hydrated and pushing his pain medications. He drooled a ton following surgery and I was starting to worry that this might be a permanent thing. I'm guessing it hurt to even swallow his saliva because that has gotten better.

He struggled with tolerating any food for awhile. He couldn't even tolerate his formula via his g-tube for about two weeks. He lost quite a bit of weight but has since been gaining it back slowly. He's now back to eating little bits here and there. We still have a TON of work to do before that g-tube can come out but I'm hoping one of these days we will get there. It's more a behavioral issue at this point than a skill thing. He just flat out refuses to eat. To those who say....just don't feed him, he'll eat! Nope!! He would starve himself if he had to.

He's been sick this last week as well. They removed his ear tube (the other one fell out on its own) when he went in to clean out his ears during the scope. He thought that he might be fine without them. It only took 3 weeks for him to get a nasty ear infection. I'm guessing we'll be back in soon for another set of tubes.

How's the sleeping? We feel it's helped some. We've actually heard him dreaming a couple times these last couple weeks. Not sure I've ever heard him dream before. He also seems to be not moving as much throughout the night. It hasn't shown much in his behaviors throughout the day but like we said is those are learned behaviors that we have to continue working on. He doesn't seem as exhausted during the days though. Some days are still better than others. We won't really know the actual results until we complete our sleep study in February. I'm guessing it got a little better. Not a complete fix but we figured it wouldn't be.

OHSU

A quick way to answer all questions.

Here is the run down on what's going on with Beau. Beau has severe sleep apnea. He has an average of 28 episodes an hour (where he stops breathing while sleeping). That averages about every two minutes he stops breathing. He basically never gets into a REM sleep. Which results in behaviors and energy issues during the day.

Last year from Feb to Nov his sleep apnea worsened after comparing two sleep studies. Neurology referred us to ENT in Spokane for more options because the CPAP wasn't working. They recommended tongue base reduction. We came over here (Portland) in the spring and met a different doctor for a second opinion. He was leaning more toward a tracheotomy to be placed. Both options weren't something we wanted to do.

We've been researching a ton on different solutions. After a ton of research, we found a study they are doing right now called an Upper Airway Stimulation. The down fall is it's out of Boston and you have to be 10 years old to fit the criteria. We came to the conclusion that's what we were looking ahead to do.

Then Dr. Lam (who we are seeing now) heard about our case through his partner. He called me at the end of the summer and we talked for 45 minutes discussing Beau's situation. His research is sleep apnea in kids with Ds. He knew all about the Upper Airway Stimulation and his colleagues who perform the surgery. We met him Monday in office and then did the scope on Tuesday. He was our third opinion.

Long story short, he thinks Beau would benefit from a Lingual Tonsillectomy and tacking up the back of the tongue. This is the step before the tongue base reduction where they actually remove parts of the muscle in the tongue.

-All people have tonsil tissue on the back of the tongue (lingual tonsils) that is different from what we normally think of as tonsils (palatine tonsils) that are located on the sides of the throat and seen when we open our mouths.  In some cases, substantial enlargement of the lingual tonsils contributes to airway blockage and obstructive sleep apnea.

Lingual tonsillectomy involves removal of the bulk of the lingual tonsil in order to enlarge the airway behind the tongue. 

The doctor offered if we stayed the rest of the week he'd do it tomorrow so we didn't have to travel back and forth again. So here Beau and I are awaiting the surgery tomorrow at 7:15AM.

He's hoping this will open up his airway enough to hold him over until he turns 10 and can qualify for the Upper Airway Stimulation. Us too!

I've been super impressed with everyone so far and how accommodating and flexible they have been just for us.

Hoping for a fast recovery so we can get home.


- Posted using BlogPress from my iPhone

Brantley- 9 Month Update

• You're eating everything in site. We haven't found anything you absolutely hate. You love to eat dirt, sand & rocks as well. You will put ANYTHING in your mouth.
• You've found the stairs and love to climb them. You're super fast as well. You mastered all our stairs yesterday. 
• You love watching your brothers and follow them around as fast as you can.
• You are currently working on your top four teeth. Your two front teeth will be coming through after the two next to them. You haven't enjoyed getting these four teeth in. You will have 6 teeth total when all four pop through. 
• You're pulling up on EVERYTHING right now. I found you standing in your crib the other morning at 4 am with a huge smile on your face. 
• You want to walk so bad but still don't have the coordination for it.
• You've been army crawling everywhere. However, yesterday you decided to try out really crawling a little bit. 
• You have quite the scream on you when you are trying to talk. You still inhale to laugh! 
• You haven't slept through the night yet. You're still getting up twice through out the night to nurse and then you go right back to sleep. You sleep from about 7pm-7am
• You LOVE dogs!
• You're my first water baby. I can't keep you out of it. 
• You started waving yesterday (8/18)

Weight: 18lb 4oz (23%)

Height: 71.1 cm (30%)

Head: 45.5 cm (62%)

Prayers

I know I have a lot on my mind when I resort back to blogging. This seems to be the place I go to get all my emotions written down and off my mind. People always comment how amazing and strong I am. However, it is a daily struggle sometimes. 

Having a child with medical needs is emotionally draining and exhausting. It also makes you question everything you are doing as a parent. Am I making the right choice? Do we need to do more? What if we don't do anything at all?  

I was hit with this reality yesterday.

When we went to Portland a month ago, we didn't get answers. Dr. Milczuk, we visited with wasn't up to date with all the new information and didn't know a ton about kids with Down syndrome and sleep apnea issues. He did try to connect us with his partner, Dr. Lam, who specializes in all that stuff while we were over there but he was out of the office. We should've been visiting with Dr. Lam all along. Long story short, we came home feeling like we needed to get the CPAP to work. Knowing it would take a bit to get use to it but it needed to work. That is still a work in progress.

I kind of accepted the fact that he may always have sleep apnea issues until he can get old enough to wear the CPAP.  We'd just deal with the behaviors and daily struggles each day as they came. That was until yesterday.  

Dr. Lam personally called me and spent about 40 minutes talking to me about Beau and sleep apnea. He said Dr. Milczuk talked to him about Beau. He basically said that Beau needs something done now. He said it would be a disservice to Beau to just wait and see. He said that they consider sleep apnea severe at 10 and Beau is at a 28. He said because he's starting so severe the only thing that will solve it completely is a trach. He talked about the tongue base reduction a ton as well even though that won't correct it completely. 

Long story short, Kyle, Beau and I will be flying back to Portland soon to meet Dr. Lam and then have a scope the following day to see what's going on in there. Dr. Lam would like to look for himself and see where we go from here.

We need a ton of prayers that we find the right solution for Beau. 

Brantley-7 Months

The day after you turned 7 months you decided it was time to move. You weren't strong enough to crawl on all fours so you mastered the army crawl real quick. You went for Tammy's purse strap first!  You got your first teeth in this month (bottom two). You haven't enjoyed getting teeth much. You still aren't enjoying baby food. We've tried and tried and you shiver or gag every time. We finally decided to go straight to table foods and you seem to be enjoying it. You are all over the house now and getting faster by the day. You in hail to laugh or talk sometimes. It's the funniest thing! You LOVE watching your brothers and think they are pretty comical. You are waking 2-3 times a night to eat. You still LOVE bath time and being outside. Your eyes are a blue/green/brown color. They seem to change depending on what you wear. Your hair is finally coming in very slowly. It's a blonde/orangy color.

A few pictures from the last month or so.