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!
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