Jul 16, 2014

Decann with CPAP on Monday


Ainsley will be going in MONDAY to attempt decannulation (removing the trach)!!!

Really I wasn't trying to leave you hanging as much as I was waiting for confirmation from her doctors that it was really going to happen and when because there were some scheduling issues. We got confirmation last night.

What to say first?!

We are cautiously optimistic that she will be coming home trachless on Tuesday after an overnight observation at the hospital of her sleeping without her trach using CPAP (Continuous Positive Airway Pressure). There is a chance that she could have trouble during the day without the trach but we don't expect that. Her airway is narrow through the area around the vocal cords (glottis) and because of that she does have difficulty breathing well when she is crying, coughing or is exerted. There are times she removes her cap. But we hope it's because she can and that she will learn to manage through these things. Clearly she will have an adjustment period. There is also concern about how she might do when she gets sick. The biggest obstacle though is her ability to sleep (well) without breathing through a trach.

On June 22nd  Ainsley had her third sleep study. We didn't need a sleep study to know that Ainsley's airway obstructs when she sleeps without the trach. Ainsley has been capping (covering the trach with a cap and breathing through her nose and mouth) with mixed success since January of 2009. Historically she will fall asleep with the trach on and be okay at first, gradually breathing heavier until she eventually is stridorous and then wakes when she can't get enough air when reaching REM/deep sleep after a couple hours.  It is not uncommon for children with low muscle tone to have obstructive sleep apnea. We have several friends whose children were trached and required CPAP to get their trach out. They all say that it is a very difficult adjustment, just as bad if not worse than the first year of life with a trach, and that is saying something. However none of them want the trach back instead, so I've held onto that.

In years past Ainsley's sleep studies showed severe OSA but I believe they were not accurate. To prepare Ainsley we used the CPAP at home before her sleep studies, with her CAP ON. She did okay. Although she didn't love it, eventually we worked her up to sleeping with the mask on the entire night. The pressure settings at home were far less than what was indicated during the sleep studies. At the last sleep study I asked that they allow us to position her on her side (past studies they required her to be on her back, the worst possible position for OSA) and I slept on the sofa bed so as not to influence the test results with my own wakings and movement. The improvement we've seen from the last sleep study to this sleep study is really just because of those things rather than actual improvement. Her airway is very much the same as it was a year ago.  However, having better sleep study results has made her doctors more comfortable with the idea of trying to take the trach out.

As her Pulmonologist has said, "Ainsley is giving us a yellow light." So although it's not a "green light" it is worth trying. The worst case is things don't work out and we have to put the trach back in (perhaps surgically). Aside from the need for CPAP the biggest concern for me is how she will do at school without a one-on-one nurse. I am concerned about her breathing until we have seen that she is okay (on the bus as well as at school). But I am also concerned about how she will safely navigate the school environment. She needs so much help. Navigating the campus from point A to B in the halls, at recess, and in the lunchroom. She needs help actually making sure she eats safely and enough food. She needs help in the bathroom with her clothing, wiping and hand washing. She needs help using her communication device.

When the sleep study results came in and I heard that the doctors would consider taking out the trach if we wanted to try I had to think about it for a week or so. The trach is safe. She is well cared for. We don't know how it will be for Ainsley and since she has never known life without a trach we really don't know the negative ways that she could be impacted and how her life might be improved without the trach. Ex-trachie parents generally report an increase in their child's energy, ability to eat and speech. I hope for those things for Ainsley. This is why we are trying. But there are many kids who fail their first, second or third attempt.  People say to trust your mama gut. But that doesn't work well for me. My gut is tied in knots on this one and I don't trust it. Or maybe that IS the sign. Either way I am prepared to try because I need to see this to believe she can do it but I also need to see it to know that she can't. So I don't continually wonder "what if we would have tried".

It feels like life on the Ainsley front was just getting easier and this has the potential to turn things upside down. We met with Ainsley's pediatrician on Thursday (pre-op) and she was concerned for us because of the loss of nursing and the demands of CPAP at night. I was able to get assurance from the school district and the Developmental Disability Administration (the Medicaid waiver that pays for nursing after private insurance and the school district) that they will continue to provide nursing for up to 60 days. This will allow us to safely see how she does at school and gives the school time to find a one-on-one aide. I'm sure they hope she will eventually not need one-on-one. I hope for that too, I just don't think she's ready for that kind of change right now. Despite some difficulties we've had with nursing over the year Ainsley's primary nurse has been with us for five years. She has been really great. Ainsley loves her and I'm sure will miss her.

Ainsley is happy with her trach. She really has no issue with it. From her perspective this is not likely to be seen as a positive change. The one good thing, is that without the trach she will need CPAP. That will likely make it a bit easier than when it was just to prepare her for the sleep studies.

This time she got a Happy Meal on the way as a treat.

She did better with all the tape and wires but still was rather miserable.

Until the morning when it was done and they rewarded her with LEGOS.

I tried explaining this to Ainsley last night and brought out the calendar for a visual explanation. I can't believe we don't even have a week. In addition it's Adrian's birthday Friday. We are getting our water heater replaced Saturday (it's been leaking since December and having to empty a pan twice a day has gotten very OLD). I know that these next few days are going to FLY by!

I'm not feeling ready. We'd asked for a date in early August. Part of me expected it would take longer. This was fast and unexpected. But Ainsley's Pulmonologist is the attending next week so it's the best time to do it. We found out because we ran into her ENT in surgery Monday and he filled us in. I was afraid they would schedule it for Wednesday when Steve will be in California on an important business trip. Sure enough they were planning a Wednesday admit. I can't imagine, after 7 years, doing the decannulation without Steve at my side. Please keep us in your thoughts and prayers. Of course I will update the blog as best as I can.

Speaking of updates Ainsley did great after surgery, just as I suspected! By the next day she was nearly acting normal. But I did allow her to watch TV for nearly two full days straight. That girl loves her shows!

Today you can see she is very happy and back to her normal self.

The corner of her eye looks a bit sore and will need time to close up.  You might be able to see better if you zoom in. I don't think you can really be sure of the aesthetic result until things are fully healed. The surgeon said to expect that her eyelid may look droopy for a couple months. So we will wait and see. He said the lash fell out with the needle so that likely means that pesky lash died and will not grow back. I can only imagine how uncomfortable that has been for Ainsley and I look forward to seeing how she uses her sling once she is healed. It looks like my suspicions were right. She did start opening her eyes more even Monday and there seems to be less eye goop already but she needs more time to be sure.

Stay tuned next week for updates. Thanks for your support!


  1. Wow Susan! This is exciting news! I will be praying things go well next week and look forward to your updates! xoxo

  2. I am over the moon for you guys ! I hope the decann goes smooth and the transition to CPAP is super easy for Ainsley. So glad to hear that eyelash finally gave up, I can only imagine how annoying that was for her. Looking forward to see how things go on the both fronts. BIG (hugs) momma !!

  3. Go Ainsley. Will be keeping fingers crossed.

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