Successful Surgery - UPDATE

I'm sorry for the long delay in updating the blog! I just can't seem to stay at my computer for more than a second before Simon needs me for something!

The surgery seems to have been successful. He does not have any pain now and the swelling is completely gone and he is moving around like crazy in the spica cast. So that sounds to me like the leg is healing. Three more weeks from yesterday the cast comes off - yeah! A day to party for sure. Though there will still be work to be done. He will not be able to walk - or even sit up for several days as he has lost those muscles from being in the cast. It took him about 2 weeks to walk fairly good after only being in the petrie casts for 3 1/2 weeks. We have a Rehab admission scheduled for April 14th for the cast to come off and to start rehab.

So, as far as the experience so far..... The first several days were hairy - mostly for pain control issues. He did have an epideral (which numbs him for the most part from the waist down) for 2 1/2 days - but it did not work completely. He had a lot of break through pain which was hard to manage. The best drug he was on was IV Toradol - which is like a very strong ibprofen. Nothing else worked as good as this drug - he felt very comfortable shortly after getting it. However, he could only have it every 6 hours and it started to wear off after about 4. He was given Morphine at first for breakthough pain, but it gave him a type of spasm which happens when a child tries to go to sleep. It then "shakes" them awake, causes pain and they can't sleep. He couldn't sleep for 18 hours because of this and that was the roughest part. Finally, valium worked for this (the only thing that worked!) and the morphine finally wore off. He was switched to Oxycodone for breakthrough pain and that worked well.

We went home on day 4 because I was not sleeping at night and I thought it may be easier at home and it was. I was able to give him his medicine exactly on time instead of waiting for staff to come and make decisions and he was fairly comfortable at home in his own bed and surroundings. We went home with Loritab (similar to Vicodin) and oxycodone, and also had on hand Valium for any ongoing spasms. He also used children's Motrin around the clock once home which kind of replaced the very loved Toridol. From about day 6 onward he has had very little pain and from day 7-8 onward he has barely even needed Motrin and we only give him Motrin before bed.

I have so much to write about our experience and tips that are helping us with his care tremendously at home! But I can only do it in segments. Here is some tidbits:

Carseat: This is a bit cumbersome. If your seat goes back all the way flat - you are in luck! If it doesn't then it takes some finageling and it's not perfect. We basically had to build up the middle part of the carseat to raise it up to make it fairly flat. We were lucky that the seat back did go back flat. Af first we only used the seat bottom and that was not as comfortable. Here's a pic on the way home from the hospital. He was in a good mood - thanks to Oxycodone!

For getting around the house he uses a W/C that is reclined. It's alittle bulky - but luckily we have a lot of space in the house. I saw this caster roller on Youtube many months back and thought it would be a great fun toy for Simon to play on. Well, it was a HUGE hit! It's not only a great toy, it gets him around everywhere lickity split and gives him some independence. Here's a pic and video

Simon chasing his brother (they are having fun - really!)

I"ll will be writing more soon on pottying, sleeping, eating and other fun things!

Tentative Surgery Date March 8th, on call list....

Simon's osteotomy surgery at Shriner's hospital in Portland, Oregon is tentatively scheduled for March 8th. We are on a "call" list if a cancellation comes up, and apparantly this does happen frequently. So we are a bit on pins and needles waiting for the call. However, we haven't gone as far to pack a bag yet, but we are thinking we need to get prepared (I have started collecting 'finger' puppets that we can play with in bed as he likes this sort of thing!) .

Simon will be in the hospital for 3-4 days and then possibly in a spica cast for 6 weeks. Luckily we do have some experience (not necessarily good though!) of the petrie cast last April, so we know alittle of what to expect with a cast. However, the spica cast is quite a bit more extensive, plus he will have had surgery, so there will be some pain involved.

After the Spica cast comes off, he will go back into the hospital for a few days of rehab, then it will take a few weeks to learn to walk again, and then a few more to get his leg strength back.

He seems to be hanging in there. He limps pretty regularly now, and is a bit more hyper the last month or two, so I'm thinking he is having some chronic pain. We do give him motrin nightly now so he can try to get through the night. Without the motrin, he usually wakes up crying at some point (though he rarely complains it's his leg). He occasionally says (in a matter of fact way) that his leg hurts. He is a tough cookie. That is good for him in dealing with his health issues.... not always so good for mom who has to maintain some sort of order at home with 2 VERY active and head strong boys!

I plan to journal his progress once he has surgery as often as I can, so please check back!

Shriner's Appointment early - Surgery planned

Shriners called us and had a cancellation so we got in early - this past Tuesday! We were so happy! We were really pleased with the surgeon and his knowledge and experience with Perthes. He feels Simon needs the femural osteotomy. We tried to hear everything the doctor told us, while Simon was bouncing loudy around the room (after we had been there for a few hours....) so we are still trying to remember everything and will continue to ask questions.

Between the Seattle Orthopedist and the Shriner's MD - (Dennis Roy) we have learned that Simon has a severe case of Perthes - especially for his age. He has lost some containment of the femural head. The ball or head has also become very enlarged and is about 3 times the size of ball on the normal hip. We could clearly see this on one slide of the MRI.

Dr. Roy confirmed that there is no one easy answer or solution with Perthes. Doctors all over the world are trying different strategies at different times to get the best outcomes for these kids. Nothing can cure or stop the process of Perthes. The intervention is just trying to fix the "fallout" so to speak. His decision to do the osteotomy is basically based on his long time experience with the disease against the best outcomes he has had. He feels that doing the surgery now will possibly prevent doing "salvage surgery" which is the worst case scenario with Perthes and what often happens with kids who aren't diagnosed until a later age. This is when the bone has already grown in (and not in a good way) and they try to make the best out of the situation - but often have poor outcomes.

By doing the osteotomy now, they hope to position the head into the socket and get the bone to grow back in the best shape possible. The surgery entails breaking the femur and angling the top part of the femur into the hip socket and putting a plate on the femur where they break it. In about 4-5 months, they remove the plate. He will have a spica cast most likely for 6 weeks post surgery (this is the cast that goes from toes to arm pits). When the cast comes off, he will go back into the hospital for a few days of Rehab and then have several weeks where he will need to rebuild his muscles to walk again.

After this is all said and done, the doctor said he usually lifts a lot of the restrictions on activity. Yeah, there is some hope on the horizon. One downside, is that in 4-5 years when the bone is all grown in and he begins to grow more, they will have to re-evaluate if the head is too entrenched into the hip socket which can happen and impede movement. If this happens, he will need to go through the reverse surgery (breaking of the femur to pull it back out some....). Hopefully this won't be the case.

So, we felt really good about our experience at Shriners. They were so nice and patient with Simon. He is also doing a few extra tests to confirm that he doesn't have any other type of dysplasia going on because of of few unusual aspects of his case (such as his small size .... he is only in the 7th percentile height for his age and a few other bone abnormalities). However, he feels pretty confident it is Perthes and so do we. But it is nice to put our minds to rest as we move forward with such a big surgery to make sure it is not really something else happening.

So we are on a wait list for surgery. It can easily be 3 months away - and that is expedited in the Shriner's system. They provide all of their services for free - so there can be a wait for things. But their experience is fantastic and we feel it is worth the wait. He will be on a "short call list" in case another child has to cancel their surgery - so we will plan to be ready after Jan 1st.

In the meantime we are going to try and keep Simon as healthy as possible so when his surgery date arrives he is ready! We are also doing research on alternatives to the Spica cast - such as a hip spica brace and plan to talk to the Care coordinator at Shriners about this next week. Simon has a bad reaction to the Petrie cast because of his eczema and we feel a brace would save us all a lot of agony.

Stay tuned!!