16 May 2017

Opinionated

I imagine we are all opinionated. Liam's no different. He isn't able to freely verbalize his strong opinions as we are wont to do, nor can he tell us he disagrees with our leanings. But give him the chance to express his feelings on a school subject and he can tell you he doesn't want to participate.

R: Liam it's time to write your sentences. Do you want to write about flowers?
Liam: No
R: Do you want to write about birds?
Liam: No
R; Do you want to write about bees?
Liam: No

The teacher hears this exchange and says, "Do not give him a choice on writing his sentences! He's a boy, of course he isn't going to want to do it. You have to make him do them."

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R is always the sweet softie. "OK Liam. You have to do all the sentences."

R: Flowers _________?
 Liam: Grow

R: Birds___________?
 Liam: Fly

R: Bees ___________?
 Liam: Buzz

Show off.




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20 April 2017

No more hardware!

Last year some shocking details were left out in advance of a procedure Liam went through. At the surgical consult, surgery, and subsequent 5 day hospital stay, no one ever thought to mention some pretty significant details, not even the doctors. I discovered the particulars on my own at one of the follow up appointments when they hung his x-rays up on the wall. They didn't look right and I snapped a quick picture with my phone as the doctor hurried out of the room. The Chapel Hill orthopedics department was packed full that day and we were lucky to get a room to get Liam's casts off. They were afraid they'd have to do them in the hall and with everyone rushing everywhere the doctor gave us just a few minutes of his time with broad grins about how great Liam was looking and that he was healing well. But to me, the x-ray look awful.



As soon as we got to the car I started looking at the picture. I couldn't wrap my brain around what I was seeing and Liam's newly uncasted legs were giving him fits so I had to care for him all the way home. Once we got home I started to dig a bit further into the weird picture and the obvious metal plates shining back at me that I had never before seen nor even knew existed.


It's quite shocking to be looking at your child's 4 week post op x-rays and come to the horrifying realization that they cut his thighs in half and braced them back together with titanium brackets and you had no idea it had been done. I was just sick to my stomach. I was physically ill all weekend. I messaged friends in the field trying to figure out what had happened.

Liam had been in a lot of pain during recovery and we assumed it was just a lot of discomfort from the tendon lengthening and the heavy casts with his legs spread 16" apart along with the hip correction. Apparently, there was a whole lot more to his surgery than the doctor initially let on.

I called the doctor bright and early Monday and shared my feelings about our big surprise. He was just as taken aback by my reaction as I was by his insistence that he had told me all about cutting the femurs in the pre-op consult. I firmly told him he was mistaken and reiterated a significant detail he told me at the consult. He said that he won't do this surgery on all the kids who come in needing it if they don't have a good home life, won't receive the proper post-op care, and won't get adequate therapy and follow up over the years to come. He told me he would do the surgery on Liam because he knew he was well taken care of and it would improve his quality of life and then he told me all about how they might have to use cadaver bone, would have to put a bolt in his hip, would try to save the socket, etc... I was able to recall almost the entire conversation with him.

Bulge on the outside of his hip from the hardware.

When I reminded him of our talk he halfheartedly admitted that he probably didn't fully explain the entire surgery. When he told me they would cut Liam's femurs, we had been talking about the ball and socket where his left hip was coming out.

He never stated he was going to cut both of his femurs mid thigh, realign them, and brace them. If he had, I never, ever, would have consented to having his right leg done. There was nothing severely wrong with that leg. The right leg didn't have an issue that needed such significant surgical correction. I would never have allowed both of his legs to essential be broken and casted at the same time, when the one wasn't even an issue.

We were in the middle of the school year when we scheduled the surgery, having been told Liam would only need a week to recover. I would have known Liam needed more time to recover than a week and wouldn't have scheduled it when we did if I'd known everything involved. He ended up missing an entire month of school, because who wants to go to school with two broken legs in casts that are separated with a bar? And all along we just thought he was just miserably uncomfortable, not recovering from two broken legs.

Another angle of the bulging hardware. Looks comfy, no?

When he admitted to not telling me all of the details, he stated that maybe the parents who are fully invested in their kids should see an x-ray of what their child's legs would look like after surgery so they know what to expect. I told him that was an excellent idea as I didn't get a say so before hand on what was coming. When I told him I never would have consented to the surgery on the right leg he tried to tell me that it would have had to eventually be done anyway, "because you see that happen all the time in these kids". Which frustrated me all the more because, as the parent, I get the final say so in how my son is medically treated. I should have been given the option to say no. I should have been told so I could have lessened Liam's suffering and prevented an unnecessary procedure from happening. It was not the doctor's decision to make in this instance. It was entirely mine.

Recovery from hardware removal.
Over the past year Liam has lost a lot of rotation and flexibility in his hips, had a significant increase in clonus of both legs (muscle spasms), he gets cold very quickly, and he no longer would lay on his side due to the protrusion of the plates. They were very hard and uncomfortable.

After a full year, if proper bone growth has taken place, you can opt to have the hardware removed. Which is exactly what we did. I couldn't wait to get those stupid plates out of his body and scheduled to have it done right at the one year mark. It couldn't come fast enough.

The curved top is what was sticking out from his upper thigh above.

We are only a week post op and I can tell he feels better already. Once all the swelling goes down, the pain subsides, and his incisions fully heal, I think we will have a much happier little boy.

He already has more movement back in his legs and I'm looking forward to the day when he can cuddle with me again. We haven't been able to do that in over a year.

I am always learning on this journey we are on. I thought I had asked all the right questions, I thought I knew exactly what was taking place during the surgery, and I thought I was well informed of the recovery. I wasn't. I can't beat myself up over it when he admitted to not telling me all the details, but it just goes to show that you can think you know what you are getting into when you suddenly find yourself thrown from your high horse into the ditch, trying to pick yourself back up, and wondering what the heck just happened.  So, we saddle right back on up, and keep on keeping on. :)

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03 March 2017

Unexplained

For a kiddo who only sees his pediatrician at his well checkup, seeing her 3 times in February was unprecedented. When Liam's fourth time running a fever hit I took him in right away. I was scared with his immune system still recovering from all the antibiotics he was on, he was potentially now getting sick with the flu.

Nope. No flu. Thank God! But no answers either. I did ask her to do a blood panel so we could check for any hidden sinister signs of trouble. It looked great! Whew!

I asked about all the 2 am questions that came to my panicked mind when I was trying to comfort Liam. Do you think it's his metal plates on his femurs causing rejection? UTI? Kidney infection? Recurring fever syndrome? Something more sinister? She doesn't believe any of those are reasons for his fevers and actually felt it was due to his constipation. Which he's had since his first round of antibiotics. Which is contrary to what a typical person gets while on antibiotics. Leave it to Liam for his body to respond opposite of what normally happens.

She said you see it a lot in the elderly but that brain injured kids can suffer from it too. That was news to me. We have suffered from some pretty difficult bouts of constipation and never experienced fevers before. But if that's what is causing it, I'll take it. It's an easy enough fix. 

We have had a variety of problems this month messing with his health and if we can get him working right again and there are no more fevers we are good to go. If we still have fevers and no constipation, then we will start digging deeper to the problem. But it's one of those issues where the Dr doesn't really know where to start so you just pick somewhere and go with it.

We helped him out yesterday and I am pushing lots of water. And Liam still woke up screaming at 2:30, completely inconsolable.

I'm telling you, the worst mom feeling ever is not knowing what is going on with your child. Throw in special needs and being non verbal and you feel utterly useless. Sitting by watching your kid scream in pain and frustration with no ability to alleviate their problem is the most humbling of experiences.


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01 March 2017

February Was Full of Fun

This month has certainly been challenging. Special needs parents face a whole other situation when our littles get sick. Compound that with being non verbal and you've got a fun experiment in trying to be a doctor with no idea where the patient is hurting.

Liam got a cold early in February that didn't want to let go. When the fever started and was still going strong 5 days later I finally braved the sick waiting room at the pediatrician to see what was going on. His ears, chest, and nose were clear and with the low grade fever he was diagnosed with sinusitis. With amoxicillin on board he started feeling better. But a week later the fever returned. Took him back in and the diagnosis was sinusitis again. This time they put him on augmentin. Several days into the augmentin the fever disappeared but the vomiting started. Cue traumatic flashbacks of the days when Liam threw up 5 times a day.

We are pretty darn good at trying to catch what Liam's spews which thank God are few and far between these days. But the ones in the middle of the night, those get nasty messy. Last night we went through 3 bed changes, 3 changes of clothes, draining his stomach so we wouldn't be woken up by hurling again, with a subsequent permanent wake up call at 4 am. 😱

We are thinking the augmentin was making him feel miserable along with the uncommon side effect of completely slowing down his bowels probably made him so miserable and uncomfortable for so many days.

We tried school today for the first time since last week in an attempt to show him he could do it and to get his energy and excitement back up. He last most of the day before he just couldn't go on. When the other kids went to recess they asked if he wanted to go. He said no. Then they asked him if he wanted to play on his eye gaze. He said no. They they asked him if he wanted to go home. He said yes. Poor guy was exhausted.

See how red his face his? Poor wee man kept it together as long as he could. 💗



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24 February 2017

Communication Update #1

So many changes for Liam this year in his communication. Exactly one year ago Liam got his first augmentative communication device. He got the Tobii Dynavoxx and uses his eyes to scan and make choices. We have wished for this for him for so long and it was definitely a gift to finally get it in hand.

Liam's speech therapist has been awesome. She gets frustrated with kids like Liam because she wishes she had been involved in their therapies before now. She wishes he had gotten the eye gaze years ago. Studies show that the earlier they get the device they better they do. Duh. 

I attempted years ago to get an eye gaze for Liam. We spent an hour with a rep talking about the devices available and attempted to get Liam to use it. The appointment ended with us being told Liam needed to know more verbs before using the device. Dumb. So dumb. How can you even carry on a conversation with out using verbs? I was frustrated.That speech therapist quit that week and we went with out until we finally got the one we have now. Did I tell you she's awesome? 

She has been so supportive. She saw right away that we could train Liam to use one. For Liam it isn't just about teaching him to use the device to communicate it is also training his eye muscles. His cerebral palsy affects his eyes. It can make them tire out quicker and the weak muscles have a harder time staying focused. 

The eye gaze has a lot of activities that Liam can utilize such as games, books, etc. and we can create pages as we go. He does a great job of telling his therapist Hi and Bye appropriately. :) She also sees when he chooses not to participate and he gets in trouble. I think that's a great thing! 

 We've also implemented using a PODD for quicker home access and communication. I'll explain more on that in another post but using two forms of communication, obviously along with speaking to him, are really helping his communication emerge. I'm amazed at some of the things he says while at school and love hearing how supportive his teacher and one to one are with trying to reach my wee man.


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