Thursday, August 21, 2014

One Month Decannulated and the Final Month of Summer

Get yourself a nice cold drink or cup of tea because this is a LONG one.

Today it's officially been a month that Ainsley's been decannulated. You would think I would be thrilled to bits. In reality it hasn't been like that mostly because of the need for CPAP at night. Lately though, she's been doing better and waking less often through the night. Oddly I think this is in part to the new leg braces she got from Physical Therapy (we've been doing some summer sessions at the hospital) to wear to sleep. Ainsley's had a habit of sleeping in somewhat of a fetal position. Since she has tightness of her leg muscles we hope the braces will help. The PT thinks that Ainsley's biggest obstacle to standing right now is due to her legs not being able to fully straighten. The stretches we do haven't been enough. I expected that to be a bit of a fight but in all honesty Ainsley's taken to them quite well. Back to the CPAP. It's tolerable.

People have asked if I've seen a benefit from decannulation. Less than I'd hoped but there are some: no more searching for trach caps being the primary one (it sounds silly but I can't tell you how irritating it was to always be searching for those around the house and sit down to eat just to find she'd removed her cap and have to get up from the dinner table to find it, years of this gets quite old), no more trach snot...that's really great. Instead she has a crusty neck but still I'm not having to catch it in my hand so I'm still thrilled about that change. It's one notch down the scale of grossness.  People do seem to be impressed. Even doctors. Sadly the trach is seen as a piece of "equipment" and there is a bit of a negative association people have with it. Much like seeing someone in a wheelchair, even if they know the person can walk and they try not to let it influence their opinion. Even though Ainsley's been capping for 4 years, when they see the lack of a trach they think it's major progress. In reality her airway is much the same as it has been. She is the same kid. But they see her differently.  If she happens to also be in her walker instead of her wheelchair then they presume she has made major progress. When in reality there has been slow gradual progress over many years leading us to where she is. I'd hoped for increased appetite and verbalization but haven't given up hope that it may be coming eventually, after all a month isn't a huge amount of time.

We have more changes coming soon, now that we are nearly back to school (the 2nd). After having a nurse care for her at home as well as school for years it will be hard when she loses that security. Particularly the nurse who's been with Ainsley 5 years. Although it is difficult to imagine I am trying to have faith that she will be okay with just an aide, that they will provide a 1-on-1 and if not she may even blossom under the opportunity to be more independent. There are many ways that it could go badly but rather than share my fears I will leave it at that. At this time our nurse (bless her) is picking up the school shifts of the nurse we let go over the summer. We'll have about 3 weeks with the nurse at school before the 60 days expires and the school has to make other arrangements.

The biggest concern, and probably the true reason I haven't allowed myself to be excited about the decannulation is this: COLD AND FLU SEASON. There I said it. It's coming. Usually a week or so after school starts one of the kids bring home the first virus of the season. This is the first year I've actually been looking forward to that because the sooner Ainsley gets sick and we see how she does the better. We don't want to lose our nurse if it turns out she'll have to be re-trached when she gets sick.  With any luck Ainsley will surprise us and manage through it okay. Probably she won't get sick enough to have to be re-trached in September, but it may give us an indication of what to expect at the peak of the season. In all honesty though if it IS a struggle then I would rather take the trach back. Despite the benefits of decannulation there is a huge benefit of the trach. It allowed her to sleep very comfortably. I miss being able to see that sweet face when I tuck her in to sleep. She looks so sad going off to sleep with that contraption. But these are the hard choices of this life. Often you trade one thing for another.

Whoever it was that told me the first year of life with CPAP is worse than the first year of trach life must have had a MUCH easier first year than we had. That year was so awful that I was a bit terrified of the CPAP. In reality it's been more of a nuisance than anything. Nothing like the hell that was our first year of life with a trached baby. It makes me wonder if Ainsley would have done this well if we'd have taken the plunge 4 years ago when I made the plan and got our first CPAP machine. I can't help but imagine what a different place we might be in if she'd been trach-free these past 4 years. Oh well, it wasn't left up to me. Though the doctors supported my plan initially they were nervous because of the sleep study results despite the fact that she'd been able to sleep capped through the night with CPAP even back then.

For all my trachie friends: As you probably gathered from my description of her neck, the stoma did not close but has narrowed inside to a pin prick. When the airway is under pressure you can hear air escape. Then there are the secretions that ooze out. It's closed enough that I'm not worried about things getting into it even though things under pressure can get out. It's a bit like a cat's butt if you know what I mean. Sorry for the analogy but it works, unfortunately. Because of that we don't cover the stoma at all, even with a Bandaid. Her neck is sunken so nothing really sticks anyway.  Even so, I am a bit worried about letting her go under water in the pool. She goes in just like she did with the capped trach. In a life jacket, and a floaty ring. I wouldn't let her go in water that is deeper than her chest.


Sadly when asked about the trach Ainsley would prefer to have it than not. In this photo she actually tried to put it back in. We didn't really let her try but it was clear that from her perspective the trach wasn't so bad. I think we'll need a good 6 months to know for sure that this was a good decision.

And life moves on.....

*****
While the kids were at camp we tackled the attic thinking we were preparing to have a garage sale. Our belongings had accumulated to the point of running out of storage space. We started the process of reviewing the contents of all these boxes and deciding what to do with each thing. A. Painful. Process. It took so much time that we decided to donate the items to Northwest Center and forget the yard sale. They are an organization that helped my uncle (with Down Syndrome) a lot in his lifetime. I folded down the seats in my van and filled it TWICE. Sadly even donating took so much time that I just finished this week and now there is so little summer left. 

The sort process.

Evie's old shoes I've saved for Ainsley. Too bad she likely won't be able to wear most of them due to the need for AFOs. But they're still nice to have for special occasions.

We had little insulation in the garage roof and what was there was dirty and falling apart. I learned it isn't typical to insulate your roof, but the temperatures were extreme in this space and that isn't good for our things.

We hired a company to insulate once it was empty. Unfortunately they didn't get the staples into the wood and it was tearing the sheeting which is what holds the insulation up (it is supposed to have a space behind it). It took me a day's work to fix it and tape it so that we were then able to load the "keep" items back in.

Now that it's done we can get to everything, like for example Evie's clothing that I save for Ainsley. 

Steve will have a much easier time getting the holiday decorations.

We still have a bunch of stuff to sell (like furniture) on Craigslist. And documents, negatives and other things I need to deal with piled up in places. My house is not completely back in order, but it's tolerable and I think I'll finish up after school starts. 

I know, I know super exciting stuff right?!

The kids did have a fantastic time at their camps. Thank goodness they got to do that or I would feel very bad for the boring summer they've had. We drove up to Mt. Vernon to get Evie on Friday the 1st.

On the way up we saw this GIANT Western Red Cedar Stump. 

Ainsley was too cute in Evie's old cowgirl boots that I'd found just in time! A one time wear.

The covered wagons where the girls slept, next to the lake.

Evie on her horse which they decorate for the horse show that they put on for the parents.

We are so proud! She has become quite an experienced rider, simply from attending this camp each year.


The sky was AMAZING on the way home!

It's a bit scary now taking a long drive since there is no access to CPAP but Ainsley made it okay.

Poor Penny had been missing the kids terribly. Toward the end of the week she was saaaaad. But boy she was happy when they came home. It was so cute! After Evie got licks she bounded back to the garage looking for Adrian (who wasn't home until the next morning) and was visibly disappointed and confused not to find him. Clearly she loves the kids.

We had some very hot days (mid 90's for us is very hot) and I was glad the kids could cool off in the pool. It was great that Ainsley didn't seem to have any trouble in the water because of the decannulation.

Since Evie no longer wanted her dolls in her room she had the task of readying them for storage. 
It was so sad to see. Seriously if you have a daughter under 10 love every minute, it doesn't last long. 

I cleaned the suction machine. Hopefully for the very last time. 

And switched out the old medical equipment for the new in Ainsley's room.  It seems like this really could be the real deal so it was time, though I am keeping all her medical equipment and supplies until the spring, just in case.

Old syringes are a great way to fill water balloons. FYI.

A friend visited on the hottest day of the year. Her daughter has PHACE syndrome and we met in the hospital years ago in the surgical center. It's so nice to be able to talk to another mom of a medically complex kid. Someone who really knows this life. The day flew by. Although her daughter is about Ainsley's age, she was more interested in doing Evie's makeup but her younger sister played Calico Critters with Ainsley for hours. It was so sweet. And great to see Ainsley feeling like she had a play date with friends. We need to get together more often. There are so many amazing dedicated parents out there working so hard for their kids. Parenting is the toughest job under normal circumstances, but sometimes I wish people really knew what it takes to raise a medically complex and/or special needs child. The support we parents give each other means so much because we know.



That day my FIRST ALBUM- Our Family A-Z book arrived. I am so thrilled. It was a LOT of work but it was worth it and Ainsley loves it! Hopefully it will help motivate her to memorize her ABC's. 

We've stepped up our home "therapy" efforts with Ainsley. I'm asking each family member to spend 20 minutes (minimum) working with her every day. I just can't continue to do it all myself. We're getting better at consistency. But no matter what it will be better than in the past. The kids earn a token for each 20 minute block, which they can cash in for items they want.

Number puzzle and communication device.

Alphabet matching and communication device. 

The PT sessions have been a good thing but it's never enough. Aside from the surgery and decannulation Ainsley got terrible diarrhea for nearly a week. We had the goal to get her walking over the summer, but it's not looking like that will happen. She is getting stronger and better able to stand for seconds at a time. Here are the leg braces they gave her for sleeping. 

We've tried to get out more with the walker. Ainsley gets tired. Steve finally put the seat on which we thought would help so she can rest when she needs to. Unfortunately she sometimes refuses to move like this day (but at least now she can sit). She had to use the bathroom but wouldn't walk. What to do?  I had to put her feet up on the legs and push her to the bathroom so she didn't wet herself. That is not the way it's meant to be used and we got a lot of looks. Fun times. I'd brought her to the store as "therapy" but also wanted to get a few items. Since she wouldn't walk I left them to look at toys with Evie in charge. Her poor siblings. She wanted to play with the playhouse up above all the shelves and sat there for 20 minutes and refused to move while I was gone. Then she cried and didn't want to leave the store, making a bit of a scene. Again more looks. I was reminded why I use the chair. 

My goal has been to use one of my nursing days to do errands and the other to do something special with Evie and Adrian that would otherwise be difficult with Ainsley, while we still have a nurse. This day I had to pay the bills and take care of a few things before we left so we got a late start but we stopped for a quick picnic under the trees at Farrell McWhirter park before heading to Snoqualmie Falls.



I'd wanted a hike so we took the trail down to the river, sadly, just to find it ended above the river bed 500 yards away from the base of the falls. I called our nurse to see if she could stay late. We'd seen people from the top so we decide to break the rules and climb over the fence. It was quite an adventure. 

It's a bit difficult to tell from this photo but that building at the top, the Salish Lodge is quite large. We hiked from there down the side of the mountain, across all the boulders and rocks. At first we carried Penny but then discovered she was able to navigate most of it easily. There is a part where there is runoff that you can stand under. The kids wanted to go, but it was not safe to climb up with Penny so I stayed behind, a bit envious. I wanted to stand under that water so badly. I thought the kids would stop there but adventurous Evie led Adrian to the very end of the rocks where it looked to be quite slippery and dangerous. I watched helplessly as Evie stood on a wet rock at the river's edge, considering whether to leave Penny and risk her jumping in the river and being carried away. The sound of the falls is deafening. You could scream and it wouldn't be heard. I pleaded with some teenage boys to turn back and tell them to turn around. They got an earful when they did. In hindsight I should not have allowed them to cross over without me. Still, it was all worth it to be at the bottom and feel the mist of the falls on our faces. It was so beautiful and wonderful. A once in a lifetime experience. And definitely something Ainsley couldn't do. 




This is as low as the path goes. During other times of the year there can be water surges, but in summer it was probably somewhat safe, other than the climb down the rocks.

We bought Washington cherries off the side of the road to enjoy when we got home. Delicious!

This was the summer of  Nathalie Lete plates and open face Tuscano bread, Italian black truffle cheese and egg sandwiches with a sprinkling of sea salt. So yummy! It's the little things that make ordinary days special.

We explored our heritage (Steve's parents were British immigrants in the 60's). I took Evie and Adrian to shop at the British Pantry for treats. Chocolates. Sausage rolls (but not for Adrian). And we had tea and crumpets for breakfast. 

We spent a day visiting my birth father's mother in West Seattle with one of my sisters and her two kids. 


The assisted living facility has a rooftop garden with a view of the city that she could use but she says she's too depressed to go there. There are a ton of other activities she could do too. It's a shame. She says her arms hurt and I think she is sad about her husband dying (25 years ago). She is spry, can walk really fast. She's a tough cookie and I wouldn't be surprised if she lives past 100. I hope to be like her one day. She says she wants to buy a house and fix it up herself. The glint in her eyes as she says "I can do it too, you know." makes me almost believe it.  The way I see it she is lucky. She's lived into her mid 90's and still has pretty good health and mind, a family that loves her and she gets to see her 7 great-grand kids grow up. After our visit it was a good opportunity to talk to the kids about how happiness is a choice (not always an easy one) and not a set of circumstances. It was nice to make her happy for a few hours with our visit. 

Afterward we went for lunch at an Irish Pub on the beach. My birth father's father was Irish and I have a bit on my maternal side as well. 

We tried new foods: Irish Potato Bread, and fried pickles.


What's a vegetarian to eat at an Irish Pub? A baked tater with baked beans and cheese. Minus the coleslaw on top, which seemed a little weird.

Lamb stew.

Shepherd's Pie.

Unfortunately it ended up we only had time for a short trip to the beach before heading back over the bridge but it was still a nice day. We gave the cousins Evie and Adrian's kids chairs. A passing of the torch to the new little kids of the family.  

My sister's dog Luna. My boy loves dogs. And all animals really.

Evie worked up the nerve to play a piano in the park before we left. She has music on the brain all the time.

Steve has been driving my 20 year old car. Seriously it was a 1994 Jeep Cheroke V8. A gas guzzler. It was time for him to get a nice car. He works hard and deserves it. Plus with two middle-schoolers at a choice school next year he wanted a 7 seater to make it easier to help with the increased carpool driving so he won't have to bring my car back to the house on mornings that he drives. Now that two of the 5 kids are ours we will drive to Sammamish 4 times a week. He is beyond happy with his new Ford Explorer Sport. 

Adrian has had too much screen time this summer but when I force him to get off he does creative things. Yes, this rubber band spider web is probably not that safe. It was cool though.

Evie had a friend over to view the world premier of Taylor Swift's new song. We've now heard it a hundred times. Evie is growing up fast. Her friends are important to her and she is eager to get back to school.  I told my kids to enjoy being bored this summer because childhood is the only time in your life when you will ever have that luxury.

I've got most of my school supplies but need to get clothes. So there likely won't be much opportunity for summer fun before we go back to school. Today would be my day with the kids but Ainsley has her last PT session of the summer at 3:00. I'd planned to do "our day" on Tuesday instead but we were called by the doctor with a cancellation to see Adrian for his 11 year check-up. I felt I had to take it since that means he gets his TPAP shot before school and then I don't have to pull him from school to go in September. Yesterday we had a neuro-developmental appointment which maybe I'll talk about another time. That is how our life goes, I swear, there is always something dull or practical going on, it seems. I don't know how other people seem to squeeze in so much fun. It can make summer a bit depressing at times.We have a plans to see friends a few times in these final days before school starts and Steve's going to squeeze in a trip to Wild Waves.  (I'll stay with home with Ainsley since a whole day there would be too much for her.)

And last week soccer season started for Adrian. Ugh! Evie is signed up for Pointe' classes again. I'd nearly forgotten how busy the school year is but I welcome the structure and I think the kids are ready. 

I will try to post again soon about how things go for Ainsley after she returns to school.  I hope you had a nice summer and are ready for fall.  Thanks for checking in on us.