Thursday, March 25, 2010

Pics and more

Well, Simon is downstairs on the beanbag watching his brother practice pitching with grandparent supervision so I thought I'd run to the computer and post some more pictures!

Here we go!

This is obviously a picture in the hospital the day of surgery. He had a foley catheter in as long as the epideral was in (2 1/2 days). The entire cast was green at this time - which he loved! But when they had to secure the gortex before leaving, they only had blue fiberglass.... so now he is multi-colored!

Below is Simon enjoying the high life! This was the first days home from the hospital, he spent more time in bed. No such luck now! Look at that stack of movies! We rented the hospital tray - but don't really need it now, so are returning it before we incur another month's rent on it ($40). He does still watch the portable DVD player before going to bed at night.

Below is a closer look at the carseat situation. It's the one in the forefront. I added the back to the seat and then built it up with those neck rests that you use on a plane to make it pretty firm and flat. We then use the regular seat belt. They do have harnesses and special car seats for different kid's sizes but this is what they said would work for us. I've thought of removing one of the arm rests which I can do with a screwdriver, but Simon had a fit at the mention of it for some reason. So he barely fits inbetween the armrests with his leg spread.

We put an extra twin mattress we happen to have in the shed on the floor in our den - which is kind of out of the way of the main living area. This has been great for him to lay on his stomach and lean over and play with toys. I then brought down the computer screen which happen to be right near by and he is currently obsessed with free games and videos....

I was quite proud of myself for thinking of this one.... how is he going to poop? Well, at the hospital they mentioned a "bed pan". Knowing my son, I thought he would NOT go for that very easily AT ALL! So I started thinking. We rented a commode and unscrewed the backrest. We put it at the highest leg setting (they are adjustable) and it was almost even with the bed. Perfect! since he is almost flat. We put the pillow and rolled up towel so he is slightly raised and he has been perfectly fine going potty in this chair. We also line it with a garbage bag so we can easily just take it out to the garbage! No mess to clean up! He is also easy to wipe right while he is on the commode (for those who need to know!) and we always kept a box of babywipes nearby. I do sleep with Simon because he has to be repositioned every few hours at least. Luckily shortly after his diagnosis just before age 3, he needed a new bed and I went with a full size and I'm so glad because when he needs a parent to be with him at night - we can also fit and get some sleep unlike on those little twin beds!

At first when we got home from the hospital I just went to bed when he did. But then I never had time to do anything! So I bought these extra long, extra tall bed rails from babies R Us and they are great. They actually slide underneath the bed when not in use. I put my side down when I go to bed and it doesn't even wake him up. These were a good investment - alittle spendy at $35 each - but well worth the break I get when he goes to bed at night. We keep a baby monitor we never got rid of in his room and the living room when we aren't in there so we can hear him stir. He is starting to turn himself from side to side and on his stomach at night by himself! Last night was the first time I think I didn't have to reposition him! But he gets cold, or hot, or tangled in the covers.... so you are awake many times a night - but it's getting alittle better. The first week or so is the worse because they needs meds through the night for pain control (and they don't always want to take it when they are half asleep - but are constantly moaning in pain - so they need it!) Luckily we are past that now.

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!

Monday, March 8, 2010

Surgery Day

Well today is it. We are at Shriners for Simon's surgery and he is currently in surgery and we are waiting.... He seemed to do really well and did not seem nervous before surgery. I guess it's the age and a blessing! He chose a green spica cast - so that will be fun. We have a wonderful room and the staff at Shriner's is exceptional as usual. I think I even want to work here myself!

I actually have internet access on my laptop in his room so I can keep things updated on how he is doing if he will let me leave his side for a second. I will be staying overnight the entire hospitalization and he will be here 3-4 days.

stay tuned!