Aug 10, 2015

2 Weeks Post Stoma Closure - In the Swimming Pool!

After nearly 9 years today was the first time Ainsley has ever been able to dunk her neck in water. Yes, she's been in the pool with a life vest and floaty (to ensure her neck stayed above water) and yes, she's been in the bath tub, but again NEVER with her neck submerged and always with CAUTION.

The surgeon said 2 weeks and so 2 weeks we've waited.

Ainsley was SO EXCITED! I am hopeful that when she gets more comfortable she might even try holding her breath and dunking her head, who knows, maybe she can learn to swim but baby steps for now. Of course we will still be careful so don't worry.

Aug 3, 2015

1 Week Post Stoma Closure

It's been a week since Ainsley had her surgeries: stoma closure and g-tube closure on the same day. She's been milking it all week. The girl is clever:

A: "Oh no I can't eat my dinner because of my surgery". (Point to food then headshake and point to neck.)When she ate breakfast and lunch just fine. Turns out she just didn't like the herbs in my pasta.


A: "No I can't stand up." (Headshake then pointing to stomach.) This is done at any and all opportunities. And yet somehow she is able to crawl down the hall at full speed when she wants to.

Like here when she crawled away from me and hid behind the couch to avoid the camera when I said I wanted close up pictures.

It's time to start resuming normal activity. Still, I think it's entirely possible that her tummy is a little sore. I remember how I felt after the c-section post Ainsley's birth. But then I don't think they cut as many layers through for this. I do see a bit of a bump on the left side of where her g-tube was. It's a bit tough there under the skin. I am hopeful that this bulge will go away in time. I think it is due to the extra stitches that were needed on that side to repair the cut they made.

Initially when I first saw the stoma on Tuesday I was very concerned about how it was going to look. At the hospital it was quite sunken in the center. The Steri-Strips were on the outer sides but not in the center and it appeared it wasn't stitched together in the center and that she would end up with a bellybutton scar. The Steri-Strips fell off early, over the weekend, and then I was able to see that there were actual sutures at the skin level which was what I'd expected, they just weren't visible until the strips came off. She had a lot of scarring from the trach stoma migrating as she grew so there was no way the surgery would eliminate all that, so I was aware that part would remain. It's too soon to tell how it will look when it's fully healed, but I am feeling better about how it might look. 

I will say it is FANTASTIC not to be wiping secretions off her neck multiple times a day. After 7+ years of suctioning and another year of neck goo I am SO HAPPY just to have a NECK....with NO maintenance required! Out of habit I find myself going to wipe her neck and then it just feels SO WEIRD that we are done with that. Hallelujah!

There was a bit of a concern because there was air trapped between the trachea and the skin of her neck. When you palpated under the chin, the neck and down toward the collar bone there was a crinkly sound and feeling like there was cellophane under her skin. That meant a leak in the stitches of the trachea. I tried to work the bubbles toward the incision but by Friday it was still there so I called the ENT. They wanted to see her but I assured them I would bring her in the following week if it wasn't better. Sure enough by today it was gone. I am so relieved that it's looking like it healed shut! I told them she came out of the OR looking oddly "puffed up", so I believe the air was primarily from that. Initially we'd thought it was swelling but it didn't behave like swelling. They were worried it was caused by her CPAP which could make it difficult to heal if that were the cause.

During the week I was feeling good enough about things to unpack my trach and g-tube accessory drawer in my kitchen and repurpose it for lunch making supplies. I guess the fact that I still had trachs in there 1 year post decann says something. 

As soon as I can get a bunch of boxes my next step is going to be to unload Ainsley's medical supply drawers and repurpose it for TOYS. No kid should have this many medical supplies in their closet! I will store it in the attic with the rest of her medical stuff through cold and flu season. If she makes it through with the stoma closed then I will have a big job of donating enough medical supplies and equipment to outfit a half decent clinic in a third world country. 

It was nice that E&A were off at camp while she was recovering. It made things easier.

We picked Evie up from "horse camp" Friday. She was put in the advanced rider group simply from attending this intensive camp annually for 5 years. They learned to canter as a group and she looked like a real cowgirl.  Ainsley enjoyed  the show and seeing the horses up close afterward.

Steve and Evie picked up Adrian Saturday morning and now we are all back together as a family.

As you can see Ainsley is back to her happy self. One more week and she can go in the pool.  Hooray! It looks like this is it.....she is officially successfully TUBE FREE! 
Knock on wood.

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.