Hip X-Rays and Recovery

We met with the surgeon post-surgery. Over all he was happy with the result. Her hip sockets were so shallow and had to be rotated so much that they couldn't use her own bone because they needed too big of wedges to fill in the "gap". So they used donor bone. That's good with me since it leaves that part of her hips intact. If you look really hard you can see the chunks of donor bone. It's so wedged in there that they didn't need the 4" pins. That's good with me too. They also used some of the leg bone that they removed from the femoral osteotomies. The following picture shows her "before" hips on the left and the "after" hips on the right.  The hip sockets should surround the top of the leg bone. You can see in the post-surgery x-ray that they cut and rotated her hips and they are now in better alignment over the femur. The left hip (shown on the right) is not quite completely covering the head of the femur. But he thinks it will do. (There is a 15-20% of failure or that she could need further hip work.)  You can see the plates that reconnect the femur. Those will stay unless she developes a problem with them in which case they can be surgically removed. 

 

The nurse was concerned that Ainsley was oversedated but the anesthesiologist on call just checked her out. Basically the epidural has made her so comfortable that she's taking a power nap, and some of the anesthesia is still in effect. She looks great! The cast is not as wide as we expected. It seems narrower than it was last time, when she was only a year old.  Things could change but I think she's actually going to be fairly comfortable when she wakes up, which is a huge relief.

Surgery Is Finished

They paged/called with hourly updates letting us know she was fine. It always feels weird to be at the mall (which happens to be just down the road a few blocks) shopping while your child is under the knife. But it really does make the time pass more quickly. And the distraction helps calm the anxiety. I was able to find a dress at Hanna Andersson that I think might fit over the cast, so the poor girl doesn't have to wear adult size t-shirts. I'm not sure if the Baby Legs are going fit over the cast this time around since it's 2 1/2 years later my guess is it'd be a tight squeeze to get them on. I also picked up a few new books for her. I suspect she's going to need a distraction when the anesthesia wears off, and certainly it'll be good when we get home and she can't move around. Oh, and I found the cutest set of Calico Critters. A little mouse in a wheelchair with a cast and a bunny nurse. Ainsley loves Evie's Calico Critters so this is perfect! Maybe it'll help her to act out what she's going through with the critters. I'm dreading her waking up miserable. I'm saying I'm sorry with gifts. I hope it works. 

They gave her an epidural. That way they can block the area for the next couple days without having to give her too many narcotics. That's a relief, the pain from all those cuts in her bones....Yikes. They had blood on order (typically it's that kind of surgery) but luckily she didn't need it. Her vitals remained good. They are finished and putting the cast on her as we speak.  Then I imagine it will take quite awhile before she gets out of recovery and we get a room and I have a chance to update again.

Finally Started - Bilateral Hip & Femoral Osteotomies

Our check in time was 8:45 but it was 10:30 by the time they got started. I was able to go back into the OR with her like we've done the past 2 times. It is easier on her that way, no tears or pre-sedation required. She has become more attached to her lamby, so we brought it for her to take back with her. She gave it lots of hugs and kisses during the long wait to see the surgeons. Steve and I are having breakfast at Johny Rocket's  and will kill a little time before heading back to the hospital. It's a 4-5 hour surgery so it's going to be a long day.

Happy Easter Everyone

With Ainsley's upcoming surgey I've been less focused on Easter. Almost missed the boat, actually. I had to go pick up eggs and dye last night. I sent Steve to get the candy, that I normally would have purchased weeks ago. I didn't even want to decorate. But luckily Steve pulled the totes out of the attic. Better late than never. Within that tote was this object of terror.

Would you guess that this friendly little guy doing the chicken dance would produce this kind of result?

She is naked because I'm trying on outfits for Easter. Yes the Easter that is tomorrow. I'd like for her to be able to participate in the egg hunt tomorrow at the cousins' house so I'm going to bring her walker. That probably means no dress.

 And this is what she thought of this dress, anyway. 

I think she actually said the word "off" (without the ff, the same way she says "uuu" for up) while she did the sign for off/open. Hopefully I can find something for her to wear. 

I'm waiting for Steve to get home with oil so I can bake the "nest cake" for tomorrow. 

I'm feeling very unprepared. Hopefull all will turn out in the end.  

My Little "Soccer" Star

It's spring break and Evie and Adrian had friends over today, which was nice, they all wanted to go outside. Where her brother and sister go, Ainsley wants to go. They were super-stars yesterday, tagging along to 3 doctor's appointments spread throughout the entire day. (We have 4 more days before Ainsley will be going in for surgery and had 2 pre-op appointments) Their behavior was impeccable, so much so that their pediatrician praised them. Mostly that's because I bribed them with a reward, a toy of their choice under $5. Maybe that seems excessive but the way I see it is most kids aren't spending a whole day of their spring break going to doctor appointments. And it was SO worth $10 to be able to talk to the doctors in silence. While we shopped for their toys at Bartell Drugs (waiting for a prescription) I found this:

What is this? An inflatable squishy ball that attaches to an elastic cord that you can velcro......

to a walker*......

and rig across the handlebars and fasten with a piece of tape to be a lure.

A reason to walk around in circles.

 A reason to stand on one leg. And kick.

A reason to persevere.

And....a whole lot of fun!

Can you hula-hoop and kick a ball at the same time? Ainsley wanted to try.

Hey, wait! Where're ya goin'?! I wasn't done taking pictures!

*After a lot of red tape and waiting thanks to our PT we FINALLY got the larger sling seat for Ainsley's walker. It's the right size for the walker and a much better fit. We were able to have someone who knew what they were doing adjust the walker for her growth when we picked it up. She's much more upright and is really moving in it! Too bad it's just in time to get casted.

My Stomach Hurts

....And it's not from sticky buns. Ainsley has hip dysplasia in both hips and it requires surgical correction. With all her other medical concerns it's not something I talk about very often. She suffered through a Pavlik harness at birth and later an open reduction on one hip closed on the other and months of being in a spica cast and then more months in an abduction brace. Unfortunately those treatments were ineffective and Ainsley's hip sockets are still not deep enough to hold her leg bones in place which puts her at risk for complete dislocation or painful arthritis later in life.

We've known for quite some time that surgery was in her future if we ever expected her to walk much. The question was when to do it. Although there is a certain appeal to waiting we ended up deciding that it was just delaying the inevitable. Besides, I think that the less mobile she is the easier it will be for her to tolerate being immobilized by the cast and then brace following surgery.  It would be miserable to wear a heavy itchy cast during the summer, the fall would be disruptive to the schoolyear, winter is bad due to illness...so it's now or a year from now. Meanwhile she'd just be getting bigger. Besides if there is any hope of getting her tracheostomy out this surgery has to be done first (you don't want to intubate a delicate airway after decannulation for surgery).

The surgeon was available April 5th, the day after Easter and Spring Break. Although I knew it would likely happen in the next month or so this is a bit of a shock. Perhaps it's good, though, because it gives me less time to worry. This surgery is serious. Here is a description:

A pelvic osteotomy is used when the acetabular index is not improving and there is not adequate coverage of the femur. The surgeon begins by opening the hip capsule up, hence many times the surgery is osteotomy with an open reduction. After the hip capsule is opened, the surgeon will take a wedge shaped piece of bone from the bony protuberance further up on the pelvis. This is the graft bone. Next the surgeon will cut across the pelvis slightly above the acetabulum. The bone graft will be inserted into this cut and held in place with 2 four-inch long pins. Lastly the surgeon will place a spica cast on the child which remains on up 8 weeks. The pins are taken out later, sometimes when the cast comes off and sometimes in a separate operation. The pelvic osteotomy brings the whole acetabulum (socket) down and around without changing the shape of the socket. There are different pelvic osteotomies depending on where the surgeon opens the hip socket (anterior, medial or posterior), where exactly on the pelvis the cut is made and whether more than one cut is made. But the resulting operation is still the same.

A femoral osteotomy is performed when there is adequate coverage of the femur but still the femur can move with the possibility of dislocation. The surgeon begins by opening the hip capsule. The femur is cut all the way across just slightly below the ball area. The surgeon then rotates the top of the femur slightly around towards the acetabulum. The femur is then put back together with a plate and screws. Lastly a hip spica cast is placed on the child which remains on up to 8 weeks. The plate and screws are removed in a separate operation at a later date. The femoral osteotomy rotates the top of the femur around to fit better into the acetabulum (socket) while the bottom of the leg remains unchanged.

Can you see why the thought of them doing this turns my stomach?

After all this is done she will be placed into a spica cast for 6 weeks, then an abduction brace for another 6 weeks. Having already been through this process once before we know what we are in for and it isn't fun. In addition there is likely to be pain, and she will have to rebuild her strength and regain some motor skills which she will likely lose from inactivity. She had pain in her hip for many months following the open reduction and this is likely to be much worse. And,  I suspect this time around she is going to be very unhappy to be stuck in one place. I will try to have her return to school but I'm unsure of the logistics of this. Last time even the special spica cast carseat didn't fit properly. And I have just a week before this starts. The only good thing about doing this surgery is that it will another surgery behind us.

Cognitive Evaluation

Last week I hinted that there was some heavy stuff around the corner. I setup an appointment with a psychologist at Children's Hospital to do a cognitive assessment of Ainsley. Things have been so busy setting up my New Scrapbooking "Business"  and other things that I decided to wait until it was all over to write about the evaluation.

The first step was filling out the preliminary paperwork, the medical history and routine new patient information. There were 10+pages and that was just the beginning. At our first visit in February we just talked about the medical history and he sent me home with another questionare, plus one for her teacher. Filling it out was a lot like when you take your child to the pediatrician for a well-child checkup and they ask you 20 questions about what your child can or can't do. But multiply that x10. Click on this image to enlarge it and see these questions!

I was feeling pretty bad about things after that. We circled a lot of zeros (= unable to perform). Then we went in for testing. This is a lot like tests they do in the birth to three program or for an IEP. They have a big case full of stuff and standard things they ask the child to perform. They are looking to see how much the child understands, how they problem solve, and what types of words can they understand and commands they can follow. I was actually impressed with how well Ainsley did. And so was the doctor. Some examples of tests he did:

• He placed two washclothes on the table, then put a bracelet under one and then switched them around to see if she could find the bracelet.
• He filled up a cup with blocks then asked her to do it to watch what she would do to get the final blocks in (I think there was 2 more than would fit).
• He asked her to get a rubber duck out from under a clear plexi-glass box that had an opening on one side. Then he'd move to to other tests and do it again but move the opening to a different side to see if she remembered how to get the duck out and would figure out that the opening was now on a different side. She figured that out fairly quickly, which really surprised me because of the spatial perception and motor planning involved.
• He used a picture flip chart to ask her to point to the correct picture when asked a question, to match pictures/objects, and more.

We were there about an hour and a half.  She was so good at paying attention. She really shines in that type of environment. Even though she doesn't always understand, and sometimes can't do what is asked she always TRYS and stays focused on the activity. Amazing for a 3 year old.

I saw him again today. He graded her scores over the week and we met to go over them.  It's complex with many categories. I won't go into all that here. What it boils down to is with an average score being between 85-115 she scored 65. The cut-off for mental retardation is 70 or lower. Taken at face value this would put her in the mildly mentally retarded category. In all honesty I though she would be worse than that (Especially after circling all those ZEROS.) so already I'm pretty happy because it's better than moderate or severe mental retardation.

It's easy to confuse physical disability with intellectual disability (Think cerebral palsy.). Even as her mother, the person who knows her best in the world, I have a hard time sorting it out. But as we talked further and considered all she's been through surgically, her physical limitations (due to the cerebellum malformation) and the affect of the trach on speech it seems that she would certainly score higher if she'd hadn't needed the trach, or had better control over using the muscles in the way she wants.  That makes it difficult to interpret the test. Over time the doctor thought her test scores will improve and at age 6 he suspects she'll fall into the 70-85 range which would put her in the low end of normal congnition.  The bad thing about that is it would disqualify her from receiving services that she may still need.

The other thing I learned is that in addition to the score one has to be failing in adaptive skills. So in other words if congitively you score 68 but you function fine, live independently, have a job, relationships etc then one cannot be diagnosed as mentally retarded. Also if your adaptive skills are poor but you score high then you would not be considered mentally retarded (A lot of people with physical disabilities would fall into this category.)

I realize that no doctor can really tell me how things will turn out for Ainsley. She is truly a one of a kind unique person. But after this evaluation I feel more optimistic. We will love her and value her no matter what. And she is happy and a joy to be around. That is what we all want most for our children anyway.