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. 

Sep 14, 2017

Post Op Calcaneal Osteotomies Day 4

As I mentioned in my last post Ainsley's airway got progressively noisier yesterday afternoon. At night it was clear she was having a little trouble breathing. She kept crying and pointing at her trach stoma scar. She was sounding kind of bad despite having her CPAP mask on. I told the night nurse that I was concerned but hoped it would be okay overnight and we could call the next day if needed.

She took the liberty of telling the ortho team and they called in Pulmonary and ENT. Pulmonary ordered lung x-rays and a virus swab. The nurse agreed that her lungs sounded clear (so unlikely to be pneumonia, which Ainsley never gets) and that it appeared to an issue in the upper airway. I was glad to have her support. It gave me the courage to declined their recommended tests. Then Pulmonary sent a med student. I felt bad for her. She went away and came back with a real Pulmonary doctor and I went over it all AGAIN. He was nice and funny and took the time to look up the lung CT that was done as an add on to the surgery. 

Intubation is hard on anyone's airway, so we didn't want to intubated to get a lung CT but her pulmonologist did want to see the status of her lungs since it had been awhile and she had/has brochiectasis. It is likely from her time with reflux as a baby. The doc who came this morning was not her doc so I recounted the whole medical history and how the bronciectasis was found by Dr. Cotton's team in Cincinnati when we traveled there. I hadn't been happy with the care we were getting here. It was because of their testing (routine lung CT and Impedance Probe testing for reflux) that we discovered it and the seriousness of it. 

Today's doc was kind enough to bring up Monday's CT and even compare it to the one she had a few years back. There has been no progression and Ainsley is the healthiest sick kid you'll find. No pneumonias since she was a baby in the NICU. He said he was very underwhelmed. Clearly though she has what could be a very serious condition, in her case it is not. He said it is likely "tire tracks" from the time prior to her Nissen Fundoplication. We discussed the fact that if I hadn't taken her to Cincinnati so many years ago she likely would have suffered much more serious damage to her lungs. Thanks to the ladies on the forum for teaching me so much in those early years and pointing me in the right direction!  At the end I apologized for being difficult and he said absolutely not, I'm being a terrific advocate. Which was so nice to hear. But being a terrific advocate is exhausting. In the end they agreed that she didn't need the testing at this time.

 Initially I told all of them it was an ENT issue that is related to the issue she's had since birth. But it was great that I got such a quick reading of the results, and he is going to discuss with Ainsley's Pulmonologist.

Then they sent the ENT resident who also seemed pretty green. I've grown to have less patience for training. The attending ENT is not particularly focused on airway and didn't bother to come. Together they all (Pulm and ENT) agreed on a 3 dose set of steroids since it seemed the airway trouble started about the time her initial dose of steroids from operating day was wearing off. I told them I think when she stops crying so much her airway will likely calm down. I think right now it's sore and hoarse. 

Ainsley's surgeon came by again to check on her and discuss the plan. Ainsley faked a smile. As you can see she was not particularly peppy. But, yesterday they had turned off the epidural meds and switched her to oral so that if she did well we could pull the epidural today without risk. That was done around noon and she was quite a bit happier after that. 

They pulled the catheter out of her back. Wow that was something to see. They removed the Foley catheter which you can image she really hated. They removed the tailbone padded protection and pulled all the monitor stickies. In addition they locked the IV. Although she wanted it gone they have to be sure her airway is going to be okay first. At least it was better not being connected. That meant we could get out of bed. 

 PT came after the removal and we learned how to transfer her with a slide board. We will have to be doing this over the next 6 weeks since she cannot bear any weight on her feet. In addition we will be using a bedside commode. We are required to demonstrate that we can do it before they'll send us home. So that was a major achievement of the day. In addition she had to show that she can pee after the catheter removal, which she did. Later she had a BM which is also an important part of showing they are ready to go home.

Once we transferred her into the monster wheelchair we went to the ChildLife center to get some new movies for her to watch. She wasn't impressed with the art, the movies, the playground. Nothing.

We tried to sit on the deck that happens to be outside of our room to wait for the PT to return to help get her back into bed. She didn't want to be outside enjoying the sun, was unhappy, tired and wanted to go back to bed. We aren't quite there but things are improving.She smiled for a kind lady who told us about her daughter who has CP who has been here for nearly a month after complications from spinal fusion.  She smiled earlier for the Pulmonary doctor and that's it. 

By the evening she was doing a bit better. I got Netflix going on her iPad and she was pretty happy about that. I sense that she is on the mend and we'll be discharged by tomorrow afternoon. 

As I sat in by bed trying to gather these pictures she showed me Teddy and asked to take off his leg casts. I guess I was right about Dolly. It's a funny thing the relationship between a mother and her non-verbal child. There is a special connection between us in a way that is so difficult to explain. I know her without words. I am her voice and protector. And yet there are times like these I want to weep for all things she cannot fully explain to me or anyone else. 

During this hospitalization I have been reminded many times how much harder it is to have a non-verbal child and how much simpler this whole thing would be if my child could simply answer the doctors herself, talk to the nurse, tell us what she feels like eating or even complain about what is happening. The nurse last night remarked at how well Ainsley was doing compared to the kids who typically have this surgery. I thought about it and reminded her that if we could hear Ainsley cry she would have a very different impression.  Her vocal cords are so sore from crying they hurt but no one every hears her because they clamp shut and no air escapes. 

As I think about some of the negative experiences we had this surgery I think that is the one thing I'd like medical providers to realize is that there is a huge increased demand for parents of non-verbal (and non-ambulatory) children during their stays at the hospital. I am providing medical care, acting as the informer for a very complex medical history. While they are here for a period of time I am "on duty" day and night for the entire hospital stay and then primary caregiver when we get home. Although I routinely decline hospital surveys with the social workers so I can reserve my energy and attention for Ainsley perhaps it is time to really give them some feedback. For the most part things have gone well. It might sound like it's been terrible, but really this is a hard set of surgeries to have and it really could be far worse. We are fortunate that she is healthy and recovering well. We knew this would be no picnic going into it. I've been dreading it but now it's done and soon enough it will all be over and hopefully worth it.

Thanks for checking in on us. XOXOXO

Sep 13, 2017

Post Op Calcaneal Osteotomies Day 3

Sorry for the late blog posts. I'm still having a lot of trouble blogging from my iPad. It's not uploading photos as easily as it should be. Not bringing my laptop was a mistake. I will come back and "clean up" these posts later. 

Last we got a room on the floor and were transferred at 7:30. We had a much better night's sleep and less pestering than in the ICU. Still there has been a lot of unhappiness. The pain seems to be under control on the new Valium (anti-spasm) schedule. 

She keeps saying she wants to be done. It's exhausting.She still Keeps holding up 3 fingers for the three day minimal stay she was hoping for. 3 is now the sign for I want to go home now.

We met with PT and learned our ROM exercises. The surgeon showed us her, more aggressive approach (demonstrated herself) to ROM exercises. I loved it! The tough love approach suits my style. So we repeated those a few times today while we have the benefits of the epidural on board. (At the surgeon's suggestion. The PT was of the mind that once was enough for the first day.)  Ainsley cried when we had to put the braces back on. She really hates them and it's going to be a tough 6 weeks.

I finally understand the reason for the Sciatic Nerve Precautions. While on an epidural it is possible to damage the Sciatic nerve which could be shortened along with the hamstrings over time. The nerve cannot be operated on (cut a nerve and you "break it") so isn't lengthened during surgery like the hamstrings. Because you don't have normal sensation with the epidural it is possible to stretch it too quickly and be unaware since the patient can't feel it. So we have to be careful until her epidural is removed but then positioning won't be so scary.

Ainsley didn't even want to play with Dolly even though when we packed she was so excited that she had clothes and accessories to bring. I wrapped her legs with casts but I think like a good little mommy she doesn't want her baby to go go through that. Dolly's back in the suitcase. Maybe she can helps us process feelings at home next week. She's in no mood to play.

She sounds a little junky and keeps pointing at her trach stoma scar and crying. I think her vocal cords are sore. I knew there would be trauma from the inevitable crying that comes with a major surgery. I'm very glad we took precautions to protect her airway during intubation. I'm hoping the inactivity isn't contributing to the cause. Hoping for improvement because it seems to be getting worse not better and reminds me of when she was a baby. Her vocal cords looked normal yet there was stridor. After extubation and intubation she got polyps which then turned increasingly into edema so severe her airway was pretty much swollen shut. We don't want that to happen again!

We learned that hot packs on the IV with a net wrap help distract from its presence. A little. Enough to decrease her asking for it to be removed every hour instead of every ten minutes.

The pain team came in to check her epidural leak (it's okay don't worry, it turns out it's pretty normal) and discuss the plan.  We transitioned her to oral meds today. She did well so that means we will remove the epidural and Foley in the morning and work on learning to transfer and toilet without any standing.  If her pain is managed we will get discharged Friday. 

In between "visitors" she got Mickey pancakes for breakfast but barely cracked a smile. They did forget the chocolate chips. A different kid might have really been upset. She took it in stride. 

They were diligent about re-positioning her to prevent pressure sores here on the floor (unlike the ICU, ironally). It's a pain but better than getting an infection.

Dr. Yandow came by to cut off her Ace bandages and talk. She is our first female surgeon and I'm thinking it's not a coincidence that she is the first surgeon we have ever had visit EVERY day following surgery. She took her time and as we worked we discussed other conditions like the airway and the surgical precautions and the potential of her having a connective tissue disorder that could affect other things. She inquired about her "facial appearance" and I explained the surgical history from the craniosynostosis, and how it affected her eyes and showed her a picture of Ainsley as a baby and my logic about why I think there is still an issue with the eyes and why....and she agreed with me. WOW! Can I just say again how much I love her?! And she said she would be giving it some thought and seemed genuinely interested in figuring it out. Which honestly is a first. She obviously cares very much about her patients. I think we are in good hands bringing her onto Ainsley's team. There will be a lot of follow up with her over the years.

Here you can see the size of the thigh incisions from the hamstring lengthening. 

Her hair was nearly in dreads in the back from rubbing on the pillow. I combed it out and gave her braids and she looked like a different kid.

At the end of the night her "brave doll"(given to her and named by one of her nurses) said good night to the family. She wanted the TV off and to go to bed. At home she always ends the night with a hands up in the air in a questioning way. She wants to know what is happening the next day. Often she asks me to repeat it. She did the same tonight. She is starting to understand both that this part is nearly over but also that it is going to be a long recovery at home. Reminding her why we did it (to make walking easier for her) is only going so far. She typically has a radical improvement during the car ride home from the hospital. I'm hoping for that this time too. It's hard seeing her so unhappy. 

Sep 12, 2017

Post Op Calcaneal Osteotomies Day 2

After my post the nurse was able to get a special hospital band to attach to the crossbar of her braces to get it off her arm. It seems like such a small thing, but the IV and hospital band are the things she hates most. Her pain is still mostly controlled with the epidural and a rotating schedule of Children's Advil and Tylenol. She's able to have some morphine as needed. And she is on Valium to prevent muscle spasms, and will be on that for a few weeks.

Our nurse left the bathroom lights on so SHE could see. Seriously, what about the patient who is trying to sleep at night?  Ainsley kept repeatedly waking me by raising her arm for me throughout the night. Just when I drifted off to sleep the compressor of the bed (it's filled with air) would start up and through the air plugs it sounded like a vacuum or air blower. This happens about every 20 minutes.  The next day the nurse told me she had been removing her CPAP mask (which the hospital had placed on her by a respiratory therapist) to swab her mouth which made me very angry. With all this no wonder she wasn't falling asleep. Finally around 4:00am I let the nurse know she needed to turn that light off.

About then Ainsley finally settled (trying to sleep in a lit room in weird surrounding after a big surgery while a nurse is touching you every few minutes makes is hard) and I was finally able to sleep just to be awoken at 6:00am by the charge nurse right in my face saying they needed to move our room. I had to pack up the whole room. Right then. I was angry to say the least. The night after such a major surgery we need our rest to recover! Those who know me know I'm not a morning person. Catch me off guard deep in some much needed sleep and I'm not very nice.

Then started the unending activity that happens at the hospital: shift change, the resident Ortho came in, the ICU attending, there was rounds (that interestingly had about 12 people, two were signing in sign language), we met with the orthopedic surgeon, then orthotics came by to do dressing changes, the charge nurse came to check in on us, the pain doc came to check her epidural, we had a visit from the social worker, the equipment guy showed up with the wheel chair, then the Ortho nurses who discovered she hadn't been repositioned as she should be, every 2 hours, the other Otho doc came by to see if we wanted to be moved to the floor (which we do).  Ainsley had a pain surge and we had to change her med schedule. Finally someone suggested we put out a do not disturb sign and we took a little nap. Of course during that time her PT Connie came by to see her. The one person (besides her surgeon) we would actually have wanted to see. Figures!

Ainsley has made a little progress drinking some apple juice and water. About 4:30 we ordered her a late lunch (she kept saying no) earlier.  Food usually helps her start to feel better..

She keeps saying "all done" and pointing at her legs. She also keeps holding up 3 fingers as a way of asking when are we going home. Three days minimum, she knew. It's going to be another long couple of hard days. But I promised her I hate being here as much as she does and will get her home as soon as we can. The next 6 weeks of no weight bearing (bed rest) are going to be difficult. I think she will be much happier at home after the Foley catheter and IV come out.

The good thing is that the surgeon said that the hamstring lengthening is pretty instant. Although things will continue to improve with therapy she should be able to sit up better because she isn't as tight. Right now she is on sciatic nerve precautions so I'm a bit nervous about moving her too much with that catheter. I did get her a bit more upright for her meal and she's better able to watch a movie which I think will take her mind off things.

As I said in my last post the feet will take more time. When the swelling goes down they will tighten down the casts which were split to accommodate the swelling. Then they will wrap the casts again. Although I'm optimistic about getting out of here it may depend on how quickly they can fix the casts to protect her feet. I'm not sure how often I'll update, but no news is good news.

Yesterday I forgot to say we are in the new wing at Seattle Children's. It's HUGE.

It's a beautiful place. The coolest thing is the elevator (this is the elevator art). The doors have sensors that adjust instantly to obstruction and will not touch you. For someone handicapped this is HUGE! I can't tell you how many times the elevator door closes on us too soon. I hope someday all elevators will be like this.

I'm still having a ton of trouble with my iPad keyboard in blogger. It bounces up and down and you have to enter return to get back to your spot and then delete the returns afterword. It is exhausting after exhausting days. So if you notice uncharacteristic typos it's because of this. I've come back to "clean things up" and used a desktop computer to enlarge the images like I usually do.