Sunday, June 12, 2016

Mason's Seattle Update

We made it to Seattle! We have loved it so far.  Here are a few of my first impressions:

-It's beautiful!
-Mt. Rainer is HUGE and breathtaking!
-Seattle is a melting pot which means there are so many awesome places to eat (i.e. tons of good teriyaki places and Indian food).
-Everything is expensive here (i.e. Little Caesars hot and ready pizza are $5.99 here!!!! The nerve!)
-There are tons of Costcos and Fred Meyers.
-I went to turn on the A/C in our house when we first moved in and it was nowhere to be found! Come to find out almost no houses have A/C here.
-Tillamook Ice Cream is heaven
-Traffic here is nuts!

We have spent most of our first three weeks here traveling to and from Seattle Children's hospital for appointments for Mason.  We live about 45 minutes away from the hospital but I found out quick that that 45 minutes can turn into 90 minutes at any given moment. Before we moved I made sure to set up as many appointments I could here in Seattle for right when we moved so that we could get established with all the new doctors asap. Since we've been here we have had 7 appointments. We've met with general surgery, ENT, nutrition, neurology, EEG, social work and sleep medicine.  So far I've been really impressed with Seattle Children's.  Their home health and nutrition have been super helpful and great to work with. Here's a recap of Mason's appointments if you're interested:

ENT
We met with Dr. Inglis and his nurse practioner to go over options for treating Mason's severe sleep apnea. Mason got a sleep study done a few weeks before we moved and we found out he had 32 apnea episodes which is pretty bad. Since we were moving so soon we had to wait to see an ENT until we moved.  Dr. Inglis didn't sugar coat anything which is good and bad. He put a scope down Mason's throat which was very traumatic for Mason (i'm sure it would be for any child!). He said after looking over Mason's file and test results we have a few options all of which made me want to cry for my poor baby. Note: In his opinion, taking out his tonsils and adenoids isn't an effective option because they're so small it wouldn't make a big enough difference. Option 1: Shaving part of the tissue above the vocal folds to increase breathing area. Option 2: sewing part of the epiglottis to the wall of the throat to help stabilize it (the epiglottis is the main culprit to his breathing issues.  It's supposed to be strong but Mason's is floppy). Option 3: Cpap and oxygen at night which is by far the least invasive but it would be hard to keep the equipment on him at night and therefore wouldn't be helpful enough Option 4: Something I won't even write because it freaked me out and it would be a last ditch effort.
Dr. Inglis said he of course wants to try the cpap first and then if that wasn't successful we'd have to explore surgical options.  He said we'd need to meet with sleep medicine for a consult and then down the road we'd come back to him if sleep medicine wasn't successful (hopefully not!). In all this appointment wasn't good. It was all bad news :(

Surgery
We met with general surgery for Mason's G-Tube.  I wanted to make sure we saw them soon after our move so we could get Mason's tube changed out.  It's supposed to be changed every 3 months and we were going on 4 months.  I met with the nurse practitioner in surgery and she said they didn't carry Mason's brand of tube (mini) so she'd show me how to change it by taking his current one out and putting it back in and then once I got home (I have a spare tube a home that I didn't think to bring to the appointment) I could change it myself.  She assured me that it's not hard and I could handle it (I'd been so worried about changing it!).  She took out Mason's tube and couldn't get it back in!!!! She went and grabbed the other brand of tube (mic-key) and taught me how to put that one in. She told me I could keep that one in for 3 months or change it out for the spare tube I had at home once I got home.  I'd be fine keeping that one in but it was a lot higher off his stomach and harder than his normal tube. She sent me home even more worried about changing it because she couldn't even get it in herself! After a few days of Mason using the new tube his stoma was bloody (it hadn't ever been before even after surgery) so I decided I needed to take matters into my own hands and change the tube myself. I did it in less than 3 minutes!!! It was 10x easier than replacing an NG tube.  I was so proud of myself.  Now hopefully I won't ever have to go back to general surgery!




Nutrition
Mason is gaining weight awesome and is staying right on the 50th percentile curve.  The dietitian said he technically should be taking in more than he's getting (he gets 115 ml every 3 hours-should be getting 130 ml every 3 hours) to maintain weight but since he can't move much he isn't burning calories as much as a normal 11 month old child.  So he gets to stay on his current regimen which I'm super happy about because whenever I try to change things he seems to start throwing up his feeds. He gets to change formula once he turns one which I'm also pretty excited about because it will be a ready to feed formula and not one I have to reconstitute like I have to now. It will also be a formula that's has fruits, veggies, and meat in it-sounds disgusting but it's great for him to get as close to a normal diet as possible through his tube.  We don't need to meet with nutrition again in a long while, I'll just stay in contact with the dietitian through email yay!

Neurology
I was super anxious for this appointment because I loved Mason's last neurologist at Cleveland Clinic (Dr. Moosa) and I was worried I would hate our new one. Mason's new neurologist is Dr. Bozarth.  She's a younger Chinese woman and she was very sweet and she seemed extremely smart and helpful. This appointment went really well.  She wanted to get an EEG done to see if the hypsarrythmia is gone.  If it's gone Mason can come off Sabril, if it's still there he has to have his dose increased. Sabril is a kind of scary medication because it can cause permanent peripheral vision loss but it's been the only thing able to treat Mason's seizures. Sabril has other side effects that aren't good like it makes Mason super sleepy. Random people are always mentioning that Mason looks sleepy.  I know they mean well but it annoys me.  Yes he's tired! He's always tired! He has epilepsy! The Drs aren't as worried about vision loss as seizures but they still try to keep Sabril therapy to less than 9 months to minimize the chance of vision loss.

A few days after the neuro appointment we got the EEG.  EEGs aren't fun.  They want your child to be sleeping during them so they tell you keep your child from napping 2-3 hours before the EEG and then a tech takes a while putting the leads on which gets the child wired and upset and then they all the sudden turn off the lights and say your child has 40 minutes to sleep. During the whole testing time the tech is in the room with 2-3 bright computer screens typing loudly.  Then every few minutes the tech comes to push harder on one of the leads on your kid's head because it's signal isn't picking up strong enough...and they expect you to get your child to sleep with all of this going on!  Thankfully Mason is the BEST BABY in the world and just goes with the flow but it still took him about 20 of those 40 minutes to fall asleep.  I'm praying they at least got some info because if not we have to go back! We're supposed to get the results from the EEG back on Monday and that will tell us a lot about what treatment in the next few months will be.



Sleep Medicine
We met with the sweetest sleep medicine nurse practitioner to go over minimally invasive options to try to treat Mason's sleep apnea. She suggested getting another sleep study here in a few months.  In the interim she wants to start Mason on inhaled steroids in hopes that they'll open his airway passages and therefore help him to breathe better.  Mason is sick a lot with upper airway stuff and she thinks the steroids will help to clear a lot of that out.  The plan is to do that for a month and then start reflux meds again.  She thinks reflux meds could help a lot in reducing congestion but she wants to try each separately so we get a better idea of what's actually working. I hate the thought of more meds but I'm all for trying reflux meds again for Mason if it means they could potentially make it so he didn't need surgery on his throat! After the steroid and reflux treatments and another sleep study then we'll try a cpap.  Mason also got a bunch of labs done at this appointment and he didn't even cry at all.  Him not crying made me cry because I'm so heartbroken that he's been through so much that getting blood drawn doesn't even phase him!

Social Work
Something awesome about the neuro clinic at Seattle Children's is that all new families are required to meet with social work which I think is awesome! I need all the help I can get.  The social worker gave us a lot of info on how health care works here in Washington and resources for special needs kids.  Thankfully we have private insurance through Casey's work but private insurance isn't good at covering medical equipment and medical equipment isn't cheap.  My main questions were how in the future do we go about getting medical equipment like wheelchairs etc. We found out that when Mason turns three he becomes eligible to go on a waiver. The waiver will provide some medical equipment for us each year which is such a relief!

So that's the long winded summary of what we've been up to.  Mason got his first hair cut a few days ago and for documentation's sake here's the before and after pic:




We sure love this little bundle of love.  I can't believe he turns one in 2 weeks!

6 comments:

Bryant & Kathie Hatch said...

Wow what a whirlwind it's been with Mason's appointments! He is such a little trooper! We love him so much and can't wait to give him lots of loves in a few weeks!๐Ÿ’š๐Ÿ’™

Craig said...

Good luck on all those appointments. I would freak out changing that stomach thing too. You are a brave person. Wow.

mildred said...

Seattle Children's Hospital sounds like a great place to be. Good job changing out the button on your own. The first time is the scariest but it gets easier/less nerve wracking over time. Sam likes me to use lots of lubricant jelly when I change his so that he can't feel it. I have so many memories of us playing baby dolls together as little girls. Never would I have ever imagined we'd both be playing mommy with g-tube babies. I wish we lived closer so that I could take your girls for you during Mason's appointments.

Rachel said...

Mason's haircut looks dashing. He sounds like a champion baby. I'm so impressed with him and you (and your family) with how strong you are and how wonderful you are to each other. Mason is lucky to have the world's best mama to be his advocate. Love you guys.

Diana Antunes said...
This comment has been removed by the author.
Diana Antunes said...

Hello, Green family!

I found your video about NG tube placement on YouTube, by chance, which led me to your blog. I am so glad that you are finding the answers you were seeking and that Mason is doing better. We may have even crossed paths, as we also live in Seattle, and our little guy is also seen at the Seattle Children's Hospital Neurology! We have Dr Beatty, though.

Despite the challenges, I hope you are all enjoying Seattle. Sending you all lots of love and good thoughts :)