Blog-ortunity!

Hey folks!  For those of you who have your own blogs, Dave at Rolling Around in My Head is hosting the Disability Blog Carnival for the month of June!!!!  Stop by and read the instructions here.  Leave him a comment with a link to YOUR blog, siting your favorite entry regarding disabilites. 

Have fun!

Steph

Mr. Crazy Legs

This is sort of a continuation of the last post.  This past week, we went back to LaRabida to meet with PT/OT and then an appointment with our Orthopedist.

We were on a mission to figure out what to do about Mr. Crazy Legs (see the pictures in the last post).  We started out in the big gym, which we normally don't do because of germs.  Christopher was having a ball!  He was checking out all of the other kids, many of whom were in pain, and I am sure he was thinking "better you than me bud!"  :( 

Anyway, we spent the better part of 2 hours having pictures of his legs taken in various angles and positions.  They wrapped and braced, dislocated and reduced joints...the child quite possibly had almost an entire 100 foot roll of Velcro wrapped around him from the waist down.  I didn't get pictures as it took four of us to get and hold everything in the correct alignment.

Then we had our appointment with Dr. Sullivan, our ortho.  We were the first appointment of the half day clinic, and he was an hour and 45 minutes late.  He was in surgery.  He swoops in with his entourage: his nurse, clinic nurse, PT, OT, and a couple of residents.  They all take turns examining Christopher, bending his legs into positions that would take serious drugs to be able to pull off with normal people.  Christopher was so good!  He just laid there playing with his toys letting them bend him like Gumby.

The Verdict:

First the good news: Dr. Sullivan thinks that Christopher will eventually stand on his own, and may even be able to walk short distances.  He most certainly will be able to eventually crawl.  Standing was my biggest issue.  If he can stand, he can help to transfer from his wheelchair to the bed, chair, toilet, etc. 

Now the bad news:  In order for that to happen, Christopher will need some pretty significant surgery and heavy duty braces, possibly for the rest of his life.  The braces I don't mind.  I am not terribly excited about another surgery. The fact that this is going to have to happen sooner rather than later doesn't help. 

Since our last visit, about 3 weeks ago, Christopher's lower legs have gone from pulling out to a 30 degree angle to about 50 degrees.  If we do not get the surgery soon, his legs will be permanently misaligned.  Things are moving too fast to even consider doing this with braces or tape.  Even 3 weeks ago, they could put his kneecaps back into place with effort. Now, they don't go at all.

The surgery will consist of the doctor cutting or "releasing" the tendons around his knees.  He will tighten some and reposition others to stretch them.  He will also be repositioning Christopher's kneecaps (patellas) and sewing them into place so that they don't dislocate anymore.  Then Christopher will be in casts from hips to toes on both legs for 4 to 6 weeks.  Pray for no GI issues or blowouts during this time - that could be disastrous for all!  Ha!Ha!

Dr. Sullivan is nervous about this surgery.  He is a VERY conservative Ortho surgeon.  Surgery is always his last option.  We have passed GO and he is collecting our $200+ this time.  He made the comment that he is always nervous operating on kids with Down syndrome.  He has had a few that have had bad seizures going in to or coming out of anesthesia.  So, I pipe up and tell him, "That's OK, he already HAS seizures!"    
NOT HELPING!

The result of that is that Christopher's neurologist is going to be there as well. Anesthesia really is one of the most dangerous things for a child with seizures.  We meet with the neuro on Tuesday and will have more information after that.

We also discussed with Dr. Sullivan the fact that Christopher was supposed to have the muscle biopsy in Milwaukee soon (on cue - Milwaukee called my cell in the office to schedule surgery!).  Dr. Sullivan said that he could do the biopsy if we wanted, but his concern was that Christopher has such a small amount of muscle.  The biopsy needs to be the size of a sugar cube.  A sample that size would almost sever his quad muscle (your front, upper thigh muscle) in half!  For you or I, that would heal and we would recoup.  For Christopher, he is concerned that he will NEVER heal and that would mean that there would be no chance of walking and make it very difficult to stand. 

So, I am leaning towards not doing the biopsy at all.  I am not sure that we will get any answers from it in the first place.  I would rather fix his knees right now, and go back in the future if we think it still needs to be done.  Maybe by then, we can figure a way for Christopher to build up more muscle.  The problem is, we don't know if he CAN make muscle. 

The surgery in Milwaukee was also supposed to include a dental exam, a bronch, and an EMG (muscle tests).  Originally, Dr. Sullivan was going to try to find somebody to broch Christopher during this surgery for us.  I have decided that is too much.  We have made an appointment with a new pulmonary doc in Chicago.  We will deal with a bronch later.  We really like our doctor in Milwaukee, but it is just so far to go.  The EMG is a test to see if the messages from the nerves are getting to where they need to be.  We WILL be asking our neuro to do this test.  We think it is important information, and we are at a point where we need the info to plan our therapy effectively.

So, surgery is tentatively scheduled for June 11, 2010.  They will most likely be putting him in the night before the actual surgery to give him prophylactic antibiotics because he is a heart kid.  That will allow us to get blood work, chest x-rays, etc done that we would have to do the morning of... Normally, this would be a surgery that they would do a 23 hour hold for.  We are not normal.  :)  We are probably looking at a 4 or 5 day stay, to get Christopher back to baseline and because the surgery will happen on a Friday.  I expect he won't want to release him until Monday.

While we LOVE our doctors in Chicago and the hospital, it is a GIANT, expensive pain to stay there.  All of the parking garages are owned by the City.  The DISCOUNTED parking rate in $33 per night.  I am a brave person and grew up in some not so nice areas of town, but even I am not brave enough to jump in my mini-van &  cruise the south side of Chicago to stop at Harold's Chicken Shack or Chef Alfredo's for dinner!!!  The one cafeteria is 4 buildings away.  We will have to pack stuff to take with us.  They do have fridges & kitchens on each floor.  Still.....pray for a short stay, or we will have to start hocking body parts in order to afford it (We'll start with Big Chris - LOL!).

Well, we will update after our appointment on Tuesday.  We should have more information then.

Hugs!

Steph