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. :)

Surgery #7- Hips and legs

Tuesday Liam went into UNC Children's Hospital for a realignment. He had a femoral and pelvic osteotomy, tendon lengthening in both legs, and a hamstring lengthening in one leg. The surgery took right wround four hours but from the time they took him back until we saw him was almost 7 hours. He was preetty much completely out of it during the first day and adapted well to coming out of the surgery.

We knew what to expect when we saw him but it was still quite a shock to see his legs casted so far apart. We were told he would have a 12" bar between his legs but it's ove 14" wide itself along with the deoth of the casts so his legs are really 16" apart.

The Dr was happy we went ahead and did the procedure now beccause his left hip was almost out of socket. That shift wore down the side of his hip and reshaped his femur. The Dr shaved down and reformed his left femur and using the piece he shaved off, they bolted it to his hip lengthening the hip back to a normal shape. He didn't need to use cadaver bone so that was good. Liam's right hip needed minimal reshaping but hewanted to do it while they had him under. They then cuts his tendons to lenghten them, these are what pulled his hip so far out of alignment and then he cut into his hamstrings to lengthen these as well due to the new length of his legs. 

Liam's blood clotting factor was low and in order to remove his epidural they needed it in normal limits. In order to do that he got a transfusion of plasma today. Once that was in they took the epidural out. All pain management is now done through oral meds. We are trying to get them at a level that keeps him as pain free as possible but so far today that has been very difficult. If he wakes he cries in pain so he tries to stay asleep.

It has been pretty rough today. Not only does he have discomfort from the surgery he has his legs weighted down with casts and he is currently stuck in pretty much the same position all day long. The swelling on his thighs and the bruising have diminished some and we have lidocain patches on them to try and help just that little bit more. 

I am hoping tomorrow he is a bit better and the pain is more manageable. I miss his silly smiles. We were supposed to be discharged tomorrow but with hiis level of pain we will be here at least one more day.

P.S. UNC has been awesome to us. Every single person we have met has been attentive and helpful with Liam. We have had a team of people in and out of his room every day checking on us and caring for him. Liam's had a pain management team, the surgeon, resident surgeon, nurses, OT, PT, a teacher, case manager, anesthesiologist,  etc... And I have nothing but great things to say about all of them and our experience here.

Shriner's Visit I

Liam had an appointment with the Shriner's Hospital for Children down in Greenville, SC this week. The appointment was actually set up by our pediatrician who when seeing Liam for a yearly check up was disturbed by the scissoring he was doing and felt that it was to the point where it needed to be fully checked out. I asked if we could just go to Duke since Greenville is 6 hours away but she really wanted us to go down there for a consult. Liam did great for the drive because he laid in the back seat reclining on pillows the whole time.  Now before you get upset with me for not having him properly seated and buckled, let me tell you- He HATES his car seat. It does NOT provide proper positioning for long periods of time and he can't stand it. It would be different if we had a wheelchair accessible van because he would be able to be in his wheelchair, but for now, we do what we can do and that is make Liam comfy and happy.





So, after driving all that way we literally took a 30 second x-ray and spent ten minutes with the ortho. I was hoping for a lot more interaction with some people since we really don't have any oversight for Liam in regards to nuero, ortho's, specialists in rehab, etc... but that was all we got.

The Dr told me that Liam's left hip (which is his much shorter leg) has a misshapen socket and the ball of the joint is shifted down from the center. He said it will eventually come out of the socket some time in his teen years and we can do one of two things: Nothing-which means when it comes out we will be managing pain for him for the rest of his life (depending on how bothersome it is to him) or we could do surgery to fix it and he would work on his right hip as well even though it isn't nearly as bad as the left. The surgery would be a four hour procedure and would require hip casts for 6 weeks with an expected return to Liam's "normal" in about 8-9 months following that.

He saw Liam's breathing (his goofy, stubborn, horrific habit of locking his jaw and closing his airway) and was concerned that he might not even be a candidate for the surgery because of his 'airway' issues. Because after all, 1 in 20 of  'these kids' die during the procedure. Yes. He actually said that to me. Sigh.

I know surgery has risks. Like, duh. But his airway is not an issue. He would be completely sedated and intubated for the procedure so his concerns were not my concerns. I know my boy and his behavioral oral fixations isn't one that would give me pause when thinking about proceeding with this surgery. He has a bad habit. He doesn't have an airway or breathing issue.

I told him he's never sick, never been hospitalized for sickness and I wasn't concerned.

He did mention us seeing a full team to evaluate Liam and look at him with new eyes. We have scheduled an appointment in June (the earliest they had) to see a "Tone Specialist" who is supposedly very good at what she does. It will be very interesting to have her lay eyes on Liam and have a perspective from someone who works so often with kids of such a severe nature. Liam takes no meds for his condition and that usually shocks everyone (the looks of surprise always crack me up). We've never had a good Dr on board to help us with him. He still may not need any, but it will be nice to know that and not wonder if we shouldn't be trying something else.

So for now, we at least know more information about Liam's hips and we will hope to garner even more info in June.

T & A Recovery

Do you like my hat?

Liam's adenoid surgery went a little off schedule.  We checked in at 8 to be ready for surgery at 9:30 but when we got Liam back in pre-op the versed made his oxygen sats low so we had to sit with blow by oxygen for a good 20 minutes before they finally took him back. By this time it was 10:15. After being back in surgery for only 10 minutes the Dr and nurses came out and called us back. I knew something was up because normally when surgery is over the Dr comes out to talk to you. Alone.

So happy before hand.

This was before the versed.

When we got back there we must have looked a bit scared and confused because he blurted out real quick that Liam was ok.

He told us that his adenoids were not as big as he thought they would be. But that Liam does very narrow passages in there and when he got to really looking he felt that his tonsils actually were very bothersome to him because they didn't leave him much room.  He asked our permission to remove them.

Uh, yeah! Not that I want it to happen but it's what we had been thinking all along.

After surgery Liam was very angry.

Because of the standard two hour recovery time in post-op, and having to have the IV in the entire time, Liam was very angry with us having to hold his arm out of his way for so long.

:(

The iPad helped only for a few minutes.

As soon as we took the IV out we left.

As soon as we got out the door he stopped crying.

He breezed through Wednesday with no problems at all. He laughed and played all afternoon.  But Thursday morning everything must have fully worn off because he felt horrible. He didn't want to stay awake and he cried when he was. Friday, same thing. Today has been the first day that he spent several hours at a time awake and didn't spend it in tears. It probably helped to have friends with little kids over because he loves to watch other kids.

 I've been trying to push fluids and yogurt to help him. The worst thing to give him is his meds. They taste nasty and I'm sure with his throat so raw it burns to swallow it. They said it would be better for him to have it by mouth than tube but I don't see how when it taste like drinking almond extract.

I hate to see him in pain and so miserable. But I am so thankful that his tonsils and adenoids have come out. He's been sleeping so much more quietly since. Hopefully even more of his issues will be resolved with the tonsils gone.

T & A

Liam makes a weird noise half the time that sounds likes he is trying to inhale air through a straw. Except he uses his nose. It's pretty loud. So loud I won't take him to church on Wednesday nights anymore. He has been doing it since last November when he got his cold. I have assumed it was just a new trick he does. Like with his tongue. He used to stick his tongue out and bite it. Now he shoves it in his cheek. I figured he picked up this new breathing noise when he was sick and just stuck with it.

A few weeks ago my mom and Liam's OT both mentioned that Liam had big tonsils within a few days of each other. So I took him to Dr. Kid who said she was 95% sure they needed to be removed and sent me to ENT.

ENT said that the tonsils were large-ish. On a scale of 1-4 Liam is a 2.5. But he felt Liam's issues were from his adenoids.  He felt they must be pretty large and are interfering with Liam's breathing. He asked if he snored. Check. Did he wake up at night. Check. Well then adenoids need to go.  But not the tonsils.  I got the impression that he didn't want to do the tonsillectomy on Liam because he's 'special'. I felt like he didn't want to put Liam through it since he's disabled...like Liam couldn't handle it.

I went home happy that the tonsils didn't need to be removed and then after I got to talking to some of his therapists (who feel like the tonsils need to go) I called back with some questions. When I talked to the nurse she reiterated what I felt....that the Dr didn't want to put Liam through that surgery because of his special needs. And that he felt a lot of Liam's issues will be resolved with the removal of the adenoids.

We shall see.
 It will be pointless if he has to have surgery twice when it could have all been done at once.

The surgery is scheduled for Wednesday. It's supposedly 30 minutes minus sedation and intubation.

I know we are lucky and this is minor but this will be Liam's fourth surgery. I wish there was no intubation. That word sends fear and pangs of anxiety through the heart of any micropreemie mom. But I'll be glad to get those suckers out of there.

I should ask if I can have them.

Put them in his baby book.


Just kidding.

Kinda.