Jul 21, 2015

Happy 1st Decanniversary to Us!

It's hard to believe that exactly one year ago today we were doing this! 

In the trach world it's called your "decanniversary", the anniversary of decannulation. It's a big deal and celebrated like a birthday.  

Nearly one year later I did this: removed her g-tube. Yes friends that means:

 I am happy to announce that Ainsley is TUBE FREE!


After tube feeding for years and spending hundreds if not thousands of hours working on oral feeding pulling the G-tube felt nearly as fantastic as pulling the trach. 

Monday Ainsley officially goes in for trach stoma closure surgery. We'll be overnight at Children's. At the same time they are planning to surgically close her g-tube stoma (with a second surgeon). With Ainsley's sensitive airway we don't want to risk an intubation for surgery in the future. Anticipating all this we discontinued use in February of the small amount of water we  supplemented. We also started giving Tylenol orally whenever she needed it, just to be sure she would be able. We made it through the high heat in Florida and the tube hasn't been used at all in nearly 6 months. Although she perhaps isn't optimally hydrated we haven't had any problems because of it.

Surprisingly it's not uncommon that kids can get attached to their tubes, and don't like the change. Ainsley cried for a few minutes but now she fine and doesn't seem to miss it. 

I slapped some Tegaderm I'd been saving over it and into the pool she went. We haven't had any leaking so if it closes by itself this week then we will cancel that surgery.

The g-tube removal happened the same day we picked her up from Camp Korey

She left Monday after a lengthy check-in to cover all of the medical information and special care instructions. As we waited our turn the campers met dogs and an alpaca and did crafts. 

We helped her make a "warm fuzzy" bag which was filled with the sweetest notes from the friends she made at camp.

Camp Korey: Girls cabin on the left, boys on the right, the rose garden and field. 
Camp Korey: a panoramic of the Hippodrome with cabins on the right.

Inside the girls cabin.

Ainsley with her camp counselor, Spud.

One of her nurses.

When we picked her up she was all smiles. She gave all her new friends hugs goodbye with hopes of seeing each other next year. This place is truly amazing and I am so thankful that it exists so that kids like Ainsley can have an opportunity to experience camp. I can only imagine what it was like for Ainsley to be away from her parents for the first time ever in her life. What a way to assert some independence for a child who relies so heavily on others. 

They said she tried everything: archery, rock wall climbing, horseback riding crafts, etc. She ate what everyone else ate (and may have even been one of their better eaters). She was, they said, a joy to have around and a popular camper. For a child who is non-verbal and often on the fringes socially to be so accepted by new friends is really a gift of immeasurable value. I'm not one to cry easily, but it does make me a little teary eyed to think of it.

I want all of the same things for Ainsley that all parents want for all of their children. I don't think people always realize that parents of kids with special needs are working night and day to give their children the opportunities to do as much in their lives as possible. And a lot is possible. We should not set the bar low. And each time the bar is met we must raise it and it is only at the end that we will know what they are capable of.

Ainsley watching the slideshow. 

Her cabin group.

I was a bit nervous since I didn't hear from the camp at all. I figured no news was good news assuming if anything bad happened they would call. When we picked up they said that the respiratory therapist was moved into her room to respond to her CPAP and pulse-oximeter alarms at night. She said the last night she didn't alarm at all despite sleeping on her back. That's the thing about Ainsley, she's always keeps you guessing. The back is usually her worst sleep position and that is known to be true for anyone with OSA. We just scheduled another sleep study for October when the stoma is fully closed, to make sure we have the right amount of CPAP support going forward.

I kept busy planning for Adrian's birthday. The timing just worked out that way, so the days passed fast. Adrian had been a bit envious of Evie's bedroom redo and the fact that she has a bigger room. She was able to get a (small) couch so he decided he wanted a beanbag chair. After a lot of searching on-line we came up with a better plan: rearranging his room so that it could accommodate a desk.  His big wish was for a Once Upon A Time poster. I'm not a huge post-as-decor-fan but we found one we could agree on and placed the order, which arrived today.

During the time that Ainsley was gone we moved some of the toys from his room to hers. He was happy to move out the "little kids" stuff which was a bit sad to me, though I know it's inevitable. Flipping the bed around makes the room feel bigger and the floating wall desk is the perfect size. He's happy that he has more light (it was a bit dark) courtesy of the 3 arm floor lamp we picked up at Target. He is SO HAPPY, and I was happy to make his dream come true. 

Adrian's one wish was to go see Inside Out so we took him to IPics the afternoon of his birthday. We finished the day with a cookies and cream icecream cake (which even Ainsley liked). It was just us, and just the day exactly the way he wanted. 

Evie painted him a picture of Penny to put over his desk. Pictures of the finished room to come...

This week I am in the process of downloading the thousands of pictures I took at DisneyWorld and the Wizarding World of Harry Potter which I hope to share (some of) soon. This weekend we send E&A off to Camp Colman and Lang's

I will try to post an update after surgery Monday. Please keep Ainsley in your thoughts. There is a small chance that the open stoma has been a way to release pressure in the airway but we are hopeful that she will do well. 

1 comment:

  1. Oh my gosh! So many awesome things in this post, and your lives!!! Love, love, love that you sent Ainsley to camp! And tube free?!? Holy cow!!! Happy Decanniversary and huge Congratulations all around!

    Love you! xoxo