Decannulation Update & Other Stuff

I've wanted to give you an update on how things have been going since decannulation last week. For the most part things have been going well for Ainsley. We have adjusted rather quickly to life without a trach. In reality the daytime isn't a lot different. Summer has always been the best time for Ainsley and because she'd been capping, so things are much the same as they were. What we DO love is not having to hunt for her cap all day. She used to take it off and leave it places or even throw it. Particularly if she cried. She does have trouble breathing when she cries, much in the same way that a young child will sometimes cry so hard there is no sound and they don't breathe. That is how it is for Ainsley nearly every time she cries. There is almost no sound, ever. We used to pull off the cap when she'd cry, so I wasn't sure how it would go and the first few times I had to watch her cry and had no cap to remove it made me squirm a bit. I'm sure the more we see her "be okay" the more confident we will be that she is going to be fine when she cries. We just need some more time. 

After taking a day off from summer school  after decann (at the Pulmonologist's request) he returned and did so happily. People at school were glad to have her back and see her without the trach. With all Ainsley's had going on summer school was a bit of a bust.

Unfortunately after one day back Ainsley had to take another day off for a therapy consultation at Children's (plus she had a post-op appointment the same day). We only have 4 sessions total, spread out throughout the summer with the goal of tailoring an optimal home program. This therapists schedule is quite full so you have to take what you can get. She put Ainsley onto this ancient stair stepper and though it was difficult for her to keep her feet on the pedals she did great. It clicked with every step. It was a good opportunity to see how she did with a bit of exertion. She managed through it.  

We have a home regime that includes stretches, exercises and on this night she played "Beanie Baby Basketball", remaining in high-kneel for balance and core strengthening. We've been collecting these for a bit and now have 111. That's a lot of throwing and it gets Ainsley breathing hard. Again, I will feel better after seeing that Ainsley can consistently work through the trouble area of exertion. 

The truth is there are many times during the day that Ainsley's breathing doesn't sound great. But she's been working through it. The bigger issue is sleep. It seems that her airway is collapsing faster than ever when she falls asleep. Perhaps due collapse of her trachea at the stoma due to the trach removal (the trach can give a stenting type effect).  So where she used to be able to go an hour or two asleep while capped she now seems to obstruct more quickly. If she falls asleep on the couch we have to get her hooked up to CPAP within 30 minutes. It's a bit frightening to know that she is so dependent upon the CPAP. She really can't sleep at all without it. We are thinking we will have to buy a generator in case of a power outage, and take the machine with us if whenever we are out and there is a chance of her falling asleep.

In addition her breathing has been quite noisy when she sleeps. Stridorous I guess. Even with the CPAP. And her sats on CPAP are staying at about 95% where she would sat at 98-100% with the trach. Sometimes she wakes up crying. And sometimes the machine gets wet and we have to take the mask off, clean her up and put the mask back on. She doing it though so that is good.

There was a part of me that really hoped that the OSA would get better without the trach but that hasn't happened. I do think we need to give things a few more weeks.

What we really need most is to see how she handles being sick.

I had hoped that decannulating would provide some benefits to Ainsley during the day in the form of increased speech, eating and energy. So far I'm not sure. I don't think it's been long enough. In all honesty I am not sure how I feel about decannulation.  If she had a fantastic airway and didn't need CPAP I'm sure I would be elated, but that is not our situation. I haven't given up hope that things will improve over the next month or two but if it doesn't in all honesty I think she would be better off with the trach.

I don't regret our decision to move forward and try it. It is the only way to truly know what is best for her. And if it turns out that the trach comes back I will be totally okay with it. Only time will tell at this point and it could go either way but let's just say I'm not cleaning out her closets and packing up her medical supplies just yet. 

We have been doing a bit of de-cluttering and organizing. Call it late Spring cleaning. Ainsley wasn't much interested in her chocolate advent calendar so it has been in the pantry and I didn't have the heart to throw it out. I brought it out this week to give her a piece and she surprised me by happily eating the whole thing.

Then the rascal got into the chocolate biscotti I bought for Steve and opened the package. She also took a banana and ate it. See the end she left on the counter top when she peeled it? She is getting more independent. This week she turned Netflix on all by herself. That means turning on 3 electronic pieces and navigating through the menu with the remote. There are adults who can't do that. We were impressed! 

She ate that entire biscotti. Dry. Which was impressive. I thought this picture also shows how nicely her eye has healed since her eyelid surgery two weeks ago. The surgical part was done on the left eye only. That was also the eye that had the inverted lash. I'm not sure if the eye appears larger due to surgery (to me it still looks smaller than the other eye) but she is certainly opening it more now that the lash isn't poking her eye. 

*****

The kids left for camp Sunday. They have really been looking forward to it. The week leading up was consumed with laundry and making sure they had everything they needed. I was ecstatic that they were nearly able to pack by themselves and they are old enough that I didn't  have to label all their clothes. We actually made it on time. Victory!

We dropped Evie off in Seattle with her friend. They have been friends since Kindergarten. At age 13 going off for a week to ride horses with a good friend has got to be the best thing ever! She's grown up so much. Last week she was invited on a group outing by a boy. Even though they like each other we are NOT considering it a date. Those days will be here too soon!

Steve and I drove Adrian to Camp Colman. He was very happy to see a friend in his cabin from last year. Amazingly it turns out the boy lives in Kirkland, the next town over. So I expect Adrian is going to have a fantastic time too!

The lake at Camp Colman. It's gorgeous and every year we drop off I wish I could be a kid again and stay.

Look at those beautiful trees towering over the cabin. It's a large facility nestled in the woods on the hillside of the lake. The trails make it difficult place to bring Ainsley so my sister Sheryl came to watch her. We left at 1:00 and didn't return until 6:30. I think I'll stay home with Ainsley when it's pickup time on Saturday.

Ainsley is off to school with her nurse for the last week of summer school. I am enjoying a few hours to myself before she comes home at 3:30. I am hoping to finally finish my A-Z Family Scrapbook for Ainsley since I have a free album if I can finish by Thursday. Steve has been busy at work but is taking tomorrow off so we can clean out our attic storage which has been on the to-do list for over a year. We have too much stuff and I'm tired of having beds in my living room and a garage so full I can't get to my gardening tools. I'm hoping to sell some things on Craigslist.  We've been a bit focused on taking care of things around the house. I am hoping to plan some fun stuff for our family in August though. I didn't feel like I could until we knew what was happening with decannulation. It feels like for the moment we are in a good spot and life is good.

Home With No Trach

The previous posts about Ainsley's decannulation process on Monday July 21st 2014:

Waiting, Decannulated, CPAP is a Success. 

Decannulation Day 7/21/14.

This dressing was put on about 2am when she was asleep. They didn't have the special skin prep that the doctor suggested to help make it stick. Sure enough when she woke up the bandage was a bubble and the adhesive had popped open on one side. When it was removed Ainsley was much happier. She hates stickies. After breakfast we waited around trying to get a few "just in case" supplies: nasal oxygen prongs, ambu-bag masks, nasal CPAP masks. The new more comfortable full face mask she needs will have to be ordered in. 

Her dieitian stopped by to give her best wishes before we left.

While we waited Ainsley fussed over the hospital bands. It's kind of funny how much she hates them. She is never really happy until they are cut off.

As I fixed her braids we got to see her work through a bit of crying. So far she's been able to calm herself. A good sign.

On the way out the door she insisted on stopping to play in the playhouse for a minute. She seems to have taken on a bit of a sassy attitude with this decannulation. We've seen several examples of this.  

 She wanted to walk which was slow but awesome! She made it as far as the gift shop. 

We bought her a dog balloon. SO CUTE! Her two favorite things. Dogs & balloons.

On our way home.

The kids came out to greet her and she was so cute showing them her naked neck.

Penny was SO happy to see us! You have to love dogs!

We now go about the business of adjusting our way of life. We were tired and excited to sit down and watch a movie together. But first I had messages to return: to the nursing agency, Ainsley's school, the Developmental Disability Association, and the home care company regarding medical supplies as well as paperwork to sign/scan/return. Steve rushed off to work. So maybe life hasn't changed so much yet. 

I will keep you posted. 

CPAP Is a Success

Over all it was a decent night as far as hospital sleep goes. We tried putting Ainsley to sleep with the CPAP on but she wasn't falling asleep and "asked" if we could put it on after she fell asleep.

She was sleeping so well I left her to see how she did.  She slept peacefully with sats above 95% until she woke about 2 hours later, at midnight rather panicked and crying. She has difficulty breathing when she cries. So I think that surprised the nurse but wasn't a surprise to me. She worked through it though, used the bathroom and went back to bed. I was pretty sure that without the trach in her airway she would still have obstructive sleep apnea but wanted to see it myself since she appeared to be doing so well prior to the 12am wake up. What seems to happen is that she runs into trouble after a few hours when she hits REM sleep. We put the CPAP mask on before she went to sleep this time to avoid the same thing happening. 

She wanted to be on her back even though she usually sleeps on her side. She didn't seem comfortable and stayed awake for a bit. Then I put her on her side and climbed into bed with her. She fell asleep quickly and slept okay except for the normal hospital disturbances like taking vitals. 

6am still sleeping with the CPAP on. She woke about 8am with a bit of a pressure mark across her nose. We are working on getting her a new mask to prevent skin break down.

She's had breakfast and is watching a movie waiting for discharge. We will be on our way home, trach-free in the next hour. With any luck this will be permanent. Time will tell.

Decannulated!

Dr. I showed up at 5:00 in his surgical scrubs. We talked for a minute and then he let Ainsley take out the trach. She's done great so far. We haven't yet seen any of the stressors: crying, coughing or exertion. Other than those the biggest concerns are how she will manage with CPAP during sleep and how she'll do during cold and flu season. With time we will see. 

Ainsley with her ENT, Dr. I. 

Ainsley seems to be a bit unsure about this whole thing. I can only imagine how great it will be if this piece of plastic is no longer down in her trachea. We owe her life to it though, and we would be happy to keep it if she needed it.

Ainsley's stoma is deeply set and the Bandaid didn't do anything to keep the stoma closed, and then it fell off on one side anyway. Our ENT says that the usual treatments (gauze with lots of tape) don't generally help or stay put. There is some special treatment to help a dressing stick that we can use if she needs it in order to use the CPAP. It's not as open as it appears here. It is narrowed to a pin prick but inside the hole.

We took her for a walk to the playroom. She didn't get particularly exerted though she did nearly run over the Chairman of Pediatrics. Apparently he's a bigwig. It was kind of cool that he got to see a patient on the day she was decanned after 7+ years with a trach.

Ainsley's Pulmonologist, Dr. D.

She had fun playing and seemed very comfortable with her new naked neck status. 

Ainsley's first meal trach-free. She enjoyed it. 

Then she asked to put her trach back in. A few times. Hopefully that doesn't mean anything other than that it feels weird to be without it after so long...well basically her whole life. 

Now we are watching Toy Story. Then we will go to sleep with CPAP. If that goes well then we'll be coming home in the late morning without the trach. I'll update tomorrow. Thanks for checking in.

Waiting

For those friends and family checking in on how things are going we are patiently waiting. 

We checked in about noon and did the necessary paperwork. We ordered lunch which was a first for Ainsley.  Even though it's hospital food it's a big deal to be admitted to the hospital and not have to be g-tube fed! Woohoo!

Last night we decided to live dangerously and let Ainsley sleep with her brother and sister without her pulse-oximeter after she said over and over that yes 3 could fit in a Queen size bed (holding up 3 fingers and nodding, then no not 2). I have a friend whose trached son hasn't ever even had a pulse-ox so maybe it's okay for a night, but I did check on her 3 times.  Since she will be sleeping with a CPAP mask on from here on out this could be the last opportunity for a "sibling sleep over". I was torn but let her and she loved it and slept great. I had butterflies all night about today but slept better than expected, all things considered.

Last pic of the kids together with the trach? I hope.

It was great to see Ainsley was excited when it was time to go and she communicated with us what was happening (pointing at the nose for CPAP). She seems to have warmed up to the idea of getting the trach out but I am eager to see how she reacts when it really happens.

We brought some things to do and will need them. Apparently the plan is that we are waiting for Ainsley's ENT to be available in between or after surgery to do the decannulation. Who knows when that might be. It's nearly 4:00 now and we've done all the paperwork, seen all the nurses, residents, interns and Pulmonary team. Done the sticker book, lunch and Netflix on the Kindle (hospital TV sucks). I am nervous and this waiting is killing me. At least I have the blog to post to. That helps. I will try to post again once it's happened, with pictures of her "naked neck". The plan after decann is to use CPAP overnight and go home in the morning trach-less, assuming all goes well. 

See that?! Decannulation, it's the plan. 

WOW! 

I kind of never thought this day would actually come. 

Thanks for checking in on us. 

Decann with CPAP on Monday

SURPRISE!

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!