Jul 28, 2015

Home Post Stoma Closure Surgery

We're home now but tired. Ready to relax.

Ainsley had a pretty good night despite the frequent waking from the nurse doing vitals and RT(Respiratory Therapist) checking CPAP every 2 hours. She woke and wanted to hold my hand. Although I pushed her bed up to the cot it wasn't easy to sleep that way for long. Since she needed physical reassurance I offered to climb into her hospital bed at 3:00am. The doctors start rounds in the very early am. 

The resident General Surgeon thought she could come off NPO orders early but then it took some work to get that to happen. In the end she got to start clears at 10:00 instead of 12:00. She tolerated apple juice so she was then allowed to start solids about an hour later. It was really difficult on her being without food and water for 36 hours so it was quite a relief once she'd eaten.

But she still wasn't her happy self.

We had a visit from the clowns from Room Circus, by far the highlight of the stay.
The doctors' cart was complete ukulele, with a rubber chicken in addition to their "black bag". 

They took the pulse-oximeter probe light from her finger and then tossed it back and forth even pulling it through their ears.  

The racoon Jasmine popped bubbles. 

Ainsley joined in helping pop them and then we saw the hint of a smile.

What she really wanted though was for them to remove the IV. There was some concern that perhaps she might have a complication from the stoma closure. The CPAP seemed to push some air into the tissues of her neck. By the afternoon it had improved so we were able to remove the IV which was a good thing. She'd been asking every few minutes for hours, and her hand had started to swell. (Likely from excess fluid and lack of movement, they said.)

We'd also been waiting to see the ENT about the appearance of the stoma closure. I hadn't been able to see it due to the dressing. It's still difficult to see due to the Steri-strips. It was a bit of a traumatic discovery given our history with prior disappointing surgeries, but I'm too exhausted to elaborate.

Although the trachea itself was stitched together very tight the outer layers, where the skin is, was left open in the center to allow fluid and air to escape. This style of closure may not leave the type of scar I'd envisioned. Kind of an innie bellybutton. Preoperatively when he said the incision would be across the neck, and that it would be loosely attached at the outer layer I imagined it still being held together in a straight line. We hope to be pleasantly surprised. She cannot soak either site for a week and no pool for 2 weeks. The Steristrips may not fall off for several weeks so we might not get a good look for awhile. 

Ainsley summed it up best. 

I am so glad to get outta that place! Having two surgeries at once is hard. 

Having a kid who's been through 17 surgeries in less than 9 years is hard. It just is.

But no tubie holes?


Pictures to come in the future.

Jul 27, 2015

Recovering From Stoma Closure

It's been a tough few hours. I was paged to post-op around noon (surgery ran long due to the "complication"). It's been a trend the last few times we've been here that they are concerned and call me back. She was crying and her heartrate was 150. When she cries hard enough her airway shuts and she can't breathe unless she calms herself. Now that the trach stoma is surgically closed the pressure has nowhere to go and I could see the panic in her eyes as she gasped for breath. When she cries she gets a headache and then the headache hurts and so she cries. An extra tiny dose of Morphine and we were able to calm her, relieve the headache (with the help of an icepack) and then her respiratory rate and heartrate slowed down to a more normal range so we could get her out of the recovery room. It's a hard place to be, there is always a baby or two crying inconsolably in a way that makes it very difficult to "feel better". It's not a place to truly recover, it's the bridge between surgery and the hospital room. 

Things got much better once we were in the room. However there have been some tough moments. She had to use the bathroom, but we had to bring the IV pole, disconnect the monitors, and since she can't walk without help and has abdominal incisions it was hard to get her the 8 feet to the toilet. Because she was crying she peed on the floor and then she cried because she'd peed on the floor. Then she couldn't breathe because she was crying and then her headache came back. You get the idea. 

While Steve has here I ran up to the playroom and grabbed some DVD's. We took turns going to eat so we didn't eat in her presence, but then he went home to let Penny out.  Between visits from the doctors, cleaning up and all the usual post-op paperwork we've watched  movies. 
I am in her hospital bed with her as I type this. And more movies it will be.

Unfortunately she's hungry and thirsty and once you pass the 12 hours without food mark it gets hard.  She was already NPO for the surgery and they want her 24 hours NPO post-surgery so it will be 36 hours minimum with no food or water. She's just not going to be happy for awhile.

I did get some swabs to clean out her mouth and that tiny bit of moisture helps. As long as I'm sitting in the bed she's calm. So here I will remain during our movie marathon. 

It looks like our discharge will be delayed a bit due to the complication (it seems her stomach got nicked/sliced during the incision causing g-tube tract to require a second repair and more opening of the stomach). This is mostly because of the NPO orders that were needed because the stomach surgery was more involved and needs a chance to heal. Her incisions were ooozing earlier but that seemed to be from the pressure caused by the crying, and is better now that she's calmed so infection doesn't look to be a risk at the moment.

We are excited to get out of here and recover more fully at home.  She looks to be a bit swollen, and her vocal cords are likely a bit traumatized. I am hopeful that the scary moments we've experienced are something that will get better once her airway's recovered a bit from the intubation and she's had a chance to adjust to the feeling of pressure when she cries and manage through it. The alternative is the unthinkable, retraching. Please keep us in your thoughts and prayers that this will be a successful closure of her life so far as a tubie.

Stoma Closure Surgery

Ainsley went in for stoma closure surgery today. They are stitching shut her trach stoma and closing the g-tube. There was a small complication with the g-tube closure but she is okay and we are at the hospital waiting for our room assignment. If things go well we expect to be released tomorrow.

Unforuntately due to the "complication" she will be unable to eat or drink until tomorrow which is a bit of a bummer. Hopefully she will have an okay night. We can't wait to see her.

This morning at 6:00am she woke up all smiles. You gotta love this girl!

Last night she "asked" in her special way about the surgery. She's started doing this thing where she raises her arms and shrugs like a question as her way of asking what is going to happen. She likes to ask about things that are coming up. We'd prepared her that the surgery was going to be happening so this was her bringing it up. Then she pointed to her trach hole and then the g-tube and smiled. When I asked what was happening tomorrow she pointed again at the trach and g-tube sites. She was excited. Bless her!

She has matured so much, she was still smiling when they took her blood pressure, that used to make her cry inconsolably. It's a bit sad that this is all so routine for her now that the idea of surgery doesn't scare her. 

I asked if she could go back to the OR by herself and she said no. So I gowned up. Maybe for the last time?

We have no other surgeries planned  and it's looking like her jaws are coming into much better alignment so the cranio-facial team thinks she will not need that surgery later (it was only a possibility, never a probabality). This may be the last time you see a picture of me in a marshmallow suit. I can hope. 

We have a long day of waiting which Steve used as an opportunity to catch up on some sleep. We were up late getting ready, and Steve started the standing frame I've asked him to build so she has a safe space to practice standing. It's going to have a desk surface so she can play and do "homework". 
I'm so excited about this! Clearly though Ainsley will need to heal before using it.

I will post an update later. Keep Ainsley in your thoughts that she will heal well and quickly. 

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.