Feb 28, 2014

Airway Appointment Results & Other Happenings

We recouped over the weekend and thankfully by Monday Ainsley was well enough to go back to school because there was a lot going on this week.

Last week we got the word that Adrian was being offered a spot at the arts focused choice school that Evie attends. It would have been an easy decision except that Evie threw a wrench in things by declaring (after Adrian was offered the spot) that she didn't want to go there anymore and wanted to go back to the regular middle school. Had we known we'd have never applied for him to get in and we'd have probably happily sent them both off to the regular school. But that wasn't the way it went down and since he did get in it made the decision very difficult because either way someone wasn't going to be happy. There is no way I'd split them up.  The mornings are challenging enough without having to be in two places at the same time (carpool and the bus stop would be at the same time). Not to mention that Adrian is so excited to be back at the same school with Evie for a year.

Assignments to this school are made by lottery and because there are only 33 incoming 6th grade spots and hundreds of applicants that means we were super lucky that Adrian got a good lottery number. But it's not all good. This school requires a 25 hour per year (per child) parental volunteer commitment (even though it is public school). It is 11 miles away in the next town over and there is no bus. That means with two children our carpool driving would be doubled (especially problematic if Ainsley is home sick from school). There are other factors as well: social environment(low boy to girl ratio, student body of under 100 compared to 700), academics, homework load, friendships etc. but I won't go into it in detail.

Monday Adrian was able attend a full day tour. When I picked up the carpool kids at 2:00 I could tell he loved it. The whole way home all the kids talked about what they like or don't like about the school. As tempted as I was to make my life easier by sending Evie and Adrian to the regular local school rather than sign up for a 3 year commitment, that is what we did after carefully considering all the pros and cons, up, down backward and forward. This was one of the harder decisions Steve and I have ever had to make. Wednesday at 3:00pm was the deadline to turn in our acceptance letter and the check (a $225 contribution in lieu of fund-raisers is also required), so it's now officially a done deal that both kids will attend there next year. (Thanks Mel and Lynn for all your input!)

I don't think I've had a chance to say that we are refinancing our mortgage to take advantage of a lower interest rates. It's been a bit of a pain but worth it because in the end because it lowers our payment by about $200.  Monday we had to urgently sign all the papers because Steve left Tuesday morning for a business trip to California. It's tough to do everything without him, but it's still much preferable compared to so many years having him gone all the time with his previous jobs.  Having reasonable work-life balance is fantastic! I think we are all so much happier as individuals and as a family.

Tuesday I was surprised to find myself having serious anxiety. I think it was PTSD from the early years with Ainsley. We had an ENT appointment in the afternoon. This one wasn't going to be a big deal, but it felt like it did in the old days, as if our entire lives hung in the balance depending on what the doctors had to say. With time comes perspective and knowledge. Thankfully.  The emotional toll of those early years was nearly unbearable and each disappointing appointment would crush our hopes as we knew we'd be waiting another 6-12 months before (hopefully but in reality, not) we might get the good news we so longed to hear, that the trach could come out. By now I know that there is no easy route and there will be no miracles for Ainsley.

The purpose of this visit was to view go down the nose with the endoscope to view Ainsley's airway. We wanted to see how her airway looked compared to a few months ago when she was on Botox. Unfortunately she cried quite a lot making it hard to see and their recorder malfunctioned so I had recorded it with my phone. I'm posting it here so you can see. Overall we've concluded that the Botox gives her about a 10% improvement and we agreed that it's probably not enough to warrant continuing 3-4 times a year, since it has to be done in the OR under anesthesia.

The doctor thinks that her neuromusular condition (essentially cerebellar hypoplasia) causes the vocal cord opening muscles to open weakly and close too forcefully. It's hard to tell what's going on exactly. Her arytenoids are bulkier than normal. Regardless of what is what and why, the bottom line is that she caps pretty well, but doesn't have a perfect airway.  He did for the first time say that he thinks she is probably okay to decannulate during the day. The obstacle is Obstructive Sleep Apnea.  The trach treats that condition beautifully. She sleeps great. Without the trach she would need CPAP with a full face mask every night. We are going to see if that is an option depending on the results of the sleep study we have scheduled for June 22nd.  As her doctor says, it will then be a matter of "picking our poison" once we know how bad the OSA is and how high a pressure setting she would need to effectively "fix" it.  In other words it will be a difficult decision since both choices stink.

We've come a long way with this doctor. There was a time when I wasn't sure he remembered us from one visit to the next. Those days are gone. He spends time with us and I think he now genuinely cares. This time he made a special point to tell me what a great job I have done caring for our special girl and I could tell it was heartfelt which meant a lot. I really feel that he is doing his best to fully consider her case and give us our best options.



Ainsley was so funny and covered her face with a book I'd brought as a distraction. She's clever and awfully cute. She was a bit traumatized by the process so I promised her a treat. As soon as I told her we were done she was all big beautiful happy smiles again, in true Ainsley form. On our way out I stopped at the cafeteria and she picked a bag of Doritos. She ate them happily in the car on the way home while watching a video and wiped her hands on her shirt, making big yellow hand prints. It was so awesome! Traveling across the bridge at rush hour meant I was running late to pick up Evie and Adrian to take them to basketball and ballet. It's non-stop some days and very draining.

Unfortunately the following night Ainsley had some thick, colored secretions and started coughing. Although I did eventually clear it with saline and her sats improved, it was a rough night and she alarmed at least 10 times. After getting all the kids off to school today I was able to go back to sleep for a few hours since I am flying solo. I really ought to be in bed instead of blogging at 1:30am considering I have to make sure Evie gets up at 6am, but Ainsley is breathing rapidly, coughing, desatting and keeping me up with alarms again anyway. She now has a 103 fever even though her secretions are clear and I suspect that she may have picked something up during the scope and regardless will probably be unable to go to school tomorrow. The rest of the week is going to be just as busy so this is my only opportunity. Tomorrow the new nurse starts and whether we go to school or not I will be training her. Steve returns in the evening and then we are into the weekend, which is almost never an easy time to blog. Despite it being such a busy week I was able to work on Ainsley's activity chart, and am about 80% finished I will post more about that next week. I hope you have a good weekend. I know I'm looking forward to getting my husband back.

1 comment:

  1. Ainsley ate a bag of DORITOS??? Wow. That girl is amazing! Congratulations to Adrian for getting in the school. I think it's so awesome that you have such determined, driven children. Mine could use a bit of that. I hope you like the new nurse and that everything works out!

    Miss you!
    Christy xoxoxo

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