Tuesday, July 22, 2014

Home With No Trach

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

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.

Monday, July 21, 2014


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.


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. 
I kind of never thought this day would actually come. 
Thanks for checking in on us. 

Wednesday, July 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!

Sunday, July 13, 2014

Some Summer Fun

I hate it when I go long periods between blog posts. It makes it harder to write because there is so much to include. That makes it even harder to find the time to blog when it will be a BIG post like this one. My last post was written the day before school let out for summer. Since then....

Adrian graduated from elementary school. He's never been so happy.

Evie had her first ballet performance en pointe'.

I'm so proud of her.

We had fun taking pictures at night afterward.

Our mattresses were delivered for the new bed and since it was a different size it required all new bed linens and pillows. It was harder to find something we liked than I expected and it all "feels funny".  I sleep better having more space, but the mattress is firmer and taking some getting used to. My shoulders hurt. I miss my duvet. Hopefully we'll get it all worked out.

Evie wanted our mattresses so we also redid her room and packed up a lot of her "childhood things", like dolls and stuffed animals. They grow up so fast! If you have a little girl hug her and play with her because in the blink of an eye they change. Now it's even harder to get our teen out of bed in the mornings. That's okay. Summer is for sleeping in and being bored (if you are a kid and have that luxury).

It's for long days spent in the backyard.

Chasing balloons and goofing around.

Eating meals outdoors.

Frozen treats.

Iced drinks with herbs. Fresh raspberries and other treats from the garden. 

Playing in the yard.

And swimming in the pool. 


Although I prefer to stay home we have gotten out a few times. We're lucky to live in such a beautiful part of the world. 

Picnic at Lincoln Park in West Seattle.

Even as accessible as it was at this place, access is not easy when you are differently abled. Sometimes it breaks my heart a little that Ainsley can't run with the other kids. She manages to be happy but a day at the beach just isn't the same for her as for most kids. A walker just doesn't do well on a rocky beach full of logs, even if you can get it down the drop off.

It was about all I could do to get Ainsley down to sit on a log. She signed that she wanted to fly the kite like her brother. She fusses about it now where she used to be fairly content. I imagine it makes her sad and frustrated but since she can't talk I really don't know.

Who could blame her for wanting to do this?! Someday she will. I took a walk down the boardwalk with my girlfriends. I cried a couple tears for her and for me. This life isn't always easy. Then I felt better.

Sometimes it is easier to leave Ainsley at home with her nurse. Sometimes I do. But then I feel guilty that she is missing out. Like the day I took Evie, Adrian and Penny to Lake Sammamish state park with their cousins. It was beautiful!

Me and my SIL.

Eagles soared overhead.

A view of the lake. It would have exhausted me to pull her and all our stuff all this way. And so I try not to feel guilty and just know I'm doing my best to balance everyone's needs.

Sometimes I think it's nice to take Ainsley's brother and sister to do things people normally do quite easily like go to the movies. When we do I'm amazed at how much easier it is. It is good for them to have some times with me that things are easy and I'm not stressed.

Other times we take Ainsley along even when it is not easy.  Like for example on this hot day when Menchie's was packed with kids and parents. Walking her through the crowded self-serve area with all the kids excitely rushing about,  trying to help her walk and also pick out and serve her frozen yogurt and juggle to pay. We get lots of looks and people aren't always patient. I pretend not to notice.

Even after sampling it first she then decided she only wanted one bite. It was still worth it. My sweet girl! I loved how excited she was. It's a rare treat in our family but the kids had good dental checkups and deserved it! 13 years and not a single cavity among them. Whoohoo!

I was very happy not to host the 4th of July this year. We had a great time. Here are some of the highlights.

Ainsley with Adrian's firework blaster.

Adrian as the 4th of July leprechaun (inside joke). 

Ainsley enjoyed the sparklers....

.....and the firework show from the field at the top of the hill in Sammammish. Penny laid quietly in my lap.

She's such a good dog and is loved very much. She's so sweet with Ainsley too.

This year Ainsley is enrolled in summer school. She started on the 7th and goes to the end of July. She was excited to go off to school. I hope it's a good experience for her. We had an issue with one of her nurses and had to let her go. Thankfully our main nurse, who has been with us 5 years, stepped up to work the additional days (she's part time with kids of her own). 

We (re)started a new plan: enlisting the whole family's help with Ainsley's "therapy". We each are required to spend 20 minutes per day working on something for her betterment. Some activities are simple like playing a game of alphabet Go Fish, but for a child who can't speak and doesn't know her letters, it's really more therapy than fun. My hope is that she will be more likely to learn the letters in this context.

Luckily Adrian loves games so he had fun despite the slow pace and added steps. 

The kids receive tokens for their work (that can be redeemed later for various things) and I think it's going to be really good for Ainsley as well as Evie and Adrian.

We consulted with a PT at Children's and she believes the biggest obstacle for Ainsley walking is that her legs don't fully straighten. So I have ramped up our stretching efforts. With all the extra standing she will do in the pool, plus the time at school, I'm excited to see where she is at come fall.

Adrian's developed an interest in archery over the last year or so, after the Percy Jackson party, but had outgrown the kid's bow we'd bought. I took him to a shop while Ainsley was at school and Evie was at the beach with a friend. It was great one-on-one time for us. He got some tips from a very nice man and we bought him a new bow for his birthday which is this week! It was really fun, and I think we might do that more often since kids can shoot all day for $5 at The NockPoint.

Remember the magazine photoshoot taken in our backyard last year? Well it was finally released so if you want to see all their pictures click here and/or here.

After spending money on landscaping and a new bed we don't have any big expensive trips planned for the summer. It will be more fun being home if we consider it a "staycation". I have a few tips: These above ground pools (below), when the liner gets holes that can no longer be patched, you can order a replacement liner for less (Bonus: it's more environmentally friendly too). We got ours this week so the pool is now set up just in time for the 90 degree weather.  Also: Did you know they make solar heaters? Since Ainsley gets pretty cold and the PT said that swimming is excellent exercise for Ainsley we bought one and it seems to add about 10 degrees to the temperature. 

I think you'll pretty much find us in the backyard all summer this year.

Tomorrow morning Ainsley has eyelid surgery for her left eye. After a previous surgery years ago her corner eyelashes rotated inward. I've been tweezing them but decided to have them permanently removed with electrolysis. That meant letting them grow out. Then unfortunately our June surgery date was taken and we were rescheduled for a month and a half later. Can you imagine having an eyelash poking your eye for MONTHS? I am so ready for it to be gone. (We couldn't pull it because then they wouldn't be able to do the procedure.) I've been worried it would fall out, but thankfully it hasn't. In addition the surgeon is opening up the corner of the eye more to give her a larger opening. I hope that after she heals and the lash is gone she will use her sling to open her eyes more, like she had been. 

I also hope this is the end of daily eye goop like this. 

Please think good thoughts for the surgery to be a success. 

We expect to be home in the afternoon. I expect it won't be a terribly difficult recovery since only one eye will have an incision, but the surgeon still wants her to stay home from school for a week. 

We have other BIG NEWS that I will post about as soon as I can.