Oct 11, 2017

1 Month Post-Op - Calcaneal Osteotomies and Hamstring Release

How have things been going this last month? I know some of you have been anxious to hear. I said no news is good news and that is pretty much true. We spent the first week or so keeping her pain under control and then weaning her off her many meds.

She got babied a lot. She had so much fun playing Super Mario Brothers with Daddy!

But then we discovered she had a pressure sore. Likely it started in the hospital but we couldn't see it because she was always on her bum. We made it through until our Tuesday post-op appointment to see the "wound specialist" and got Allyvn and Medihoney to apply. After a couple weeks of that it is now gone. It did not make this process easier. 

She spent as much time as we could on her tummy until things started to heal. 

She got a nice Get Well card from the always thoughtful Aunt Jackie with some very sweet words.

She received some gifts in the mail from Grandma Micki and Grandpa Todd. She carried Doctor Curious George around with her for a week or so afterward. We enjoyed reading the story together. It was a nice diversion when she was feeling her worst.
She had a bit of a freak out about the bandages. I don't think she understood why her legs were purple, even though we explained the surgeons mark the legs for surgery and it was just pen. She then refused to have her legs exposed until these bandages came off. 

When they did at her post-op visit she cried bloody murder. But awhile later she gave the thumbs up that the purple was gone. 

They replaced the steri-strips and proclaimed things were healing beautifully and she was already showing a lot of progress. After the hamstring lengthening her legs will straighten more and more with time and stretches.

We have a whole exercise routine we do twice a day. 5 exercises, 15 repetitions for each side. Steve's been a great dad and helped by taking one of the exercise shifts. It's a production just to get the braces off. Each has 7 velcro straps. She can remain out of the braces during the exercises for an hour twice a day, a welcome break for her but a lot of work for us. She's become stronger so it's worth it!  

We have been taking her to a weekly therapy session at Children's. They make adjustments to the routine as needed. We were there today and the therapist measured the amount of bend in the knees with force applied and without. She (we) have some work to do strengthening the muscles to create balance. When she gets the casts off on Nov. 16th we start intensive PT, 3 days a week, 1 day in the pool, 1 day doing Safe Gait each week. On Halloween she gets the casts replaced with ones she can bear weight in. Until then no weight bearing and her feet can't even rest on the floor for transfers.

This means using a slide board to get from one surface to another. 

It means it's nearly impossible to get her into my sister Sarah's car that we're borrowing (remember my car was totaled in the accident). I'm sure my van would have been a ton easier to transport her in. So that is a big fat bummer.

Because of the restrictions we pretty much have to rely on a commode or bedpan for toileting. It's a drag. This is the only time in life where I'm slightly jealous of the kids with special needs who are still in diapers. As you can see a wheelchair would not fit. Sometimes we wheel her into a bathroom, but most of the time it's just right in the bedroom or TV room which is not so pleasant.

She's been sleeping in our bed and Steve has been sleeping in her twin bed in the adjoining room. Initially she was needing meds at night, re-positioning, and was having trouble adjusting to the odd (as you can see) position. She's normally a side sleeper so she had a hard time sleeping at first. Sleeping on her back also isn't good for her Obstructive Sleep Apnea and initially she was having some trouble with her airway, likely from intubation and crying. That has improved, but I'm finding it's not uncommon that I need to replace the seal on her mask in the night. She has also started bolting upright in the middle of the night every 20-60 minutes. It's reminding me of the many years of sleep deprivation when she was trached and I'm older now and kind of cranky about it. Tonight we are going to restart a med that should help her with these shooting nerve sensations/pains. We both could use better sleep. 

She has to wear an abduction bar to keep the legs apart, this is for the hip muscle release that they did on her left side (it was tight). That is the reason her leg is up so high in the bed picture.

We have used our creativity to come up with ways to do things, and adapt. That is one of the secrets to how we survive the things we do over these past 10 years. She is unable to bath, so sponge baths suffice. After a scary episode of leaning her back in the commode with plastic bags over her legs to wash her hair I came up with this much safer solution.  She is getting some dry skin on her legs around the casts, but it doesn't seem to be bothering her yet.

I had forgotten from our previous experiences with spica casts that having a cast causes an increase in hair growth. Luckily I now know it is temporary and will go away. I'd nearly forgotten.

After the first few weeks we started to get better at transfering and figuring out how to get through our days.

We figured out that the commode makes a better wheelchair than the giant wheelchair and with the padded seat she's now comfortable enough (now that her butt healed) to sit for periods doing things around the house. Like learning to bake rhubarb strawberry pie, the last from our garden this year.

She did some fine motor strengthening picking grapes off the vines which we turned into juice concentrate. Yes that sink is FULL.

We starting using a lap tray for doing schoolwork on the couch. 

Last week we started a painting project for fall.

She's been happy to get back to doing some work.  And we actually had fun.

We are using exercise time to learn the concept of left and right and simple math like "5 exercises minus 2 exercises, leaves 3 exercises remaining." She's also getting really good at finger counting up to 15. Due to all the repetition she's starting to "get it". And she is counting down the weeks until cast removal. So are we! Okay, we know it's really another 5 but things will get much better with reduced restrictions.

We are CLOSE! This week the steri-strips came off! In true Ainsley style she became hysterical (PTSD maybe?) but then was happy and gave the thumbs up to have the last signs of the surgery incisions gone. Bless my sweet girl.

The incisions. Pray that they don't turn keloid like her others that needed injections. She also has one on her left thigh and I think 4 more on her feet from the calcaneal osteotomies. 

I figured out that I need to protect my back, which has been killing me. So we are now using a mattress on the floor when we know I can get her up afterward (like when the big kids get home). You can see her legs are getting pretty darn straight. 

Sometimes we even manage to be silly and have some fun.
Or maybe I'm going a little crazy. 

In the last month I left the house for doctor appointments and twice for the big kids' things. 

Evie needed some makeup for an audition she had. After some anxious waiting I'm pleased to announce she officially got the part and is going to be the ballerina in the Snowflake Lane parade this Christmas season. 
All those ballet lessons paid off! 
We are so proud and excited for her to have this opportunity! 

Evie was away at a drama event so we paid Adrian to help harvest our grapes and prevent them from littering the walkway. You can't make one kid work when the other is playing.

I think he secretly enjoyed it. While I spent the day killing myself doing yard work (perhaps a contributing factor to my back pain). But it was nice to be outside together.

Tuesday Adrian's braces came off! The cake, balloons and water bottle filled with popcorn (an off limit food during braces) were all from his orthodontist's office. I am super relieved that I no longer have to harass him into brushing and flossing and was very relieved his teeth were still in good shape underneath. Hopefully his gums recover quickly. 

I took Adrian to get a Homecoming outfit and he's actually happy with it.....A small miracle. Steve taught him how to tie a tie (yes my husband used to wear ties). I'd say he's going to look very dashing and it's nice to see his smile! I'm sure Evie and Adrian will both have a wonderful time at Homecoming this weekend. 

Ainsley's birthday is next Wednesday. It's hard to believe she'll be 11. Wow! Just really 11 years of complex medical care and special needs! But we're doing it!  These kids are growing up! I'm having a hard time figuring out how to make this birthday special. I've got a week. I've pulled together some amazing last minute things. I'm sure she'll have a great day!

I hope you are all having a wonderful fall! October is my favorite month and fall is my favorite season of the year.  XOXO.

Sep 15, 2017

Post Op Calcaneal Osteotomies Day 5 - We Are Home!

I am happy to be blogging this post from the comfort of home! Don't ever try to blog on an iPad. If happened to be following along and noticed typos and things changing around yes, that happened. Every time I tried to scroll the iPad wouldn't allow me to like the keyboard froze, so to get to the part of the post I was writing I had to hit return multiple times until it got to the bottom and then go and delete all the returns.  It would bump me back up to the top and the process would repeat. It was nearly as painful as our week at the hospital. But I know some of our family was watching for updates. That might include some members of my sorority sisters, those trach moms who know all too well the experience of hospitalization and/or surgery with their child. Many of those people really are interested in the medical details, but if that bores you then feel free to skim.

We had a decent night's sleep after the night nurse was able to better arrange our meds so that they only had to wake her twice instead of 5 times (I made a bit of a fuss). Sleep is more important than following a rigid med schedule. This is what we came home with.

It's important to stay on top of the post-operative pain. In my opinion it's best to keep on the narcotics for the first week and continue alternating the harmless tylenol and ibuprofen. She started to have headaches. I'm not sure if it was from the epidural or from when they didn't give her the oxycodone on schedule as I'd requested. They seemed to spike but have gone. I was pretty impressed that she was able to communicate it so clearly.

The downside to surgery and narcotics is that they can slow down your digestion which has been a big issue for Ainsley this time. Once she started eating she ate really well. Until a point when her stomach started to be too full. When she was transitioned to oral meds she had some gagging which has made it difficult. Toward the end she refused to open her mouth and even started covering it. In the morning I could barely get her to eat a bowl of Cheerios. Things have started to get better and I think her stomach will be back to normal soon. 

 The ortho team came in and over wrapped her casts because they had been spit to accommodate swelling. They get the rolls of fiberglass wet and then they just stiffen and stick after about 20 minutes.

 We chose green with pink stripes. Ian did a great job carefully making the stripes. He was awesome.

They seemed to really enjoy Ainsley as a patient. Cute aren't they? Unfortunately they'll be mostly covered with the braces most of the time. She has to wear them nearly all day for the next 6 weeks.

One of the biggest issues for us is that Ainsley HATES having an IV. It was slightly better once it wasn't running any meds and was saline locked. But even then she kept asking for it to be removed. 
 Until it was time to remove it and then she screamed bloody murder.You can see how much trouble she has breathing when she cries. Notice the sunken trach stoma. Poor love.

After I removed the bandaid (they have to put one one because they bleed) she was happy. The nurse said she's NEVER seen anyone be so happy to get their IV out.

She kept showing me and others her brave doll, waving it around. I think it's her way of saying "I'm been brave." When I put Netflix on her iPad finally she was starting to be happy again.

But alas there is a lot of work to be done. We had to complete training. Due to the fact that they cut her heel bones and then grafted in donor bone and created an arch for her feet it is critical that she not bear ANY weight for the entire first 6 weeks. Not to use the bathroom, not to make transfers from bed to wheelchair, NOTHING.

So they made me simulate a transfer into a car in the hospital bathroom using the slide board. It is not easy. But I think we got an A+. Ainsley is stronger than she looks and they were amazed and how well she helps. I don't know how the parent of kids with more severe CP manage when the child can't help with their arms. I'm really lucky, but it's still hard on my back. Of course sleeping on an extra firm pull out couch exacerbates my already bad back. I'm glad to be back to a normal bed tonight! It is going to be a tough 6 weeks but will probably go by quite quickly.

A good part of the morning was taken up trying to get a commode since we aren't sure I will be able to get the wheelchair (it's big) up to our toilets to do a safe slide board transfer. They delivered the wrong thing: a commode with fixed arms that would be useful to us. Doesn't it figure?!

High fives for passing our PT lessons so we can discharge.

I requested some wedges to help with positioning. They came up with these special gel pack things that hold whatever form you put them in. They were AWESOME. I just wish they'd given them to us day one. I'm going to show the surgeon. We were using pillows which often ended up getting out of ideal position. After hamstring lengthening you want the weight of the legs to naturally straighten the leg as much as they can, without the heels touching the bed (to protect the calcaneal osteotomies). Using these will speed up the process of straightening her legs and prevent the muscles from going back to their old position.

One interesting development this hospitalization is that Ainsley learned to use the call button to get the nurses. By the end of this stay she had zero reservations about using it. But she would also buzz them nearly every time I left the room. We were lucky when we were moved to the floor that we were literally right next to the parent room. I could go get myself water or put food in the refrigerator in a couple minutes. But she still would call the nurses to ask where I was even though I told her.

Thankfully they've added room service for families. So I was able to order food to be delivered (usually when she ate) and not have to leave her. The cafeteria is quite a distance and in the past it wasn't common for me to skip meals because it was so hard to go get food.  This is a great thing for patients: parents can eat with their child! 

We got to finish watching Paddington Bear while waiting for Steve to show up. Our room was all packed up and we were READY!

Ainsley was very happy to see her daddy! She asked about him multiple times every day.

This time when we saw the elephant she was happy and gave the "halleluah" arms in the air.

Getting out and about is going to be difficult. Steve is able to lift her safely (for her) because he is tall. Even in his bigger vehicle it was a tight squeeze. I'm still borrowing my sister's car (for Evie too) which is a compact sedan and it's not going to be easy to get Ainsley's legs or the wheelchair in.

It felt so great to be driving away from the hospital. Even when traffic on Montlake was at a complete stop. It was so nice to see Mt. Rainier as we drove over the bridge. 

As we were driving Ainsley used her AAC device to say "Evie, Adrian, foot" which I understood to mean she was excited to show Evie and Adrian the casts on her feet. I showed her how to say it fully. I found it quite interesting that she wanted me to know that was what she wanted. A pretty cool moment in communication for a genuine purpose other than requesting.

Evie, Adrian and Penny greeted her with high fives and tail wags (and a lot of excited barking of course).

We had promised Ainsley some time doing her favorite thing: playing Mario Brothers. She is allowed to be out of the braces for an hour twice a day during (part of which we will spend doing PT). Her positioning here isn't as good as it should be, but we cut her some slack after a very difficult week. She had so much fun and is so glad to be home!

I had a couple much needed beers by myself while I sat in my recliner and chose the pictures to upload for this post. 

Then it was back to work teaching Steve the things I was taught during our stay, starting with the exercises we will be doing. 

Steve has given up his spot in bed for Ainsley to have the comfort of sleeping next to mom in a comfy bed. Her breathing is still a bit labored but we are hoping for improvement over the next week. Having her in bed with me also makes it easier for me to keep an eye on her and also give night meds. I'll keep you all posted if there are any changes. No news is good news.