It is funny, at a time where everyone else is trying to get together with family and friends for the holidays we are going to be working towards isolating ourselves...well Ethan at the very least. We have had to cancel and turn down respite and have cancelled at least one session of therapy. Lorelei was able to attend one holiday party though, so she is happy.
Ethan had his appointment with his respirologist and among other things she suggested we keep him isolated, especially while he is casted. He does not qualify for the RSV immunization and apparently they will not exempt it because he is over 3. She would like to see him stay in the cast long enough to work and for his lung to heal from the rough year he had.
...so today we faced our big cast worry... Ethan pooped up the back of the cast! And not just a little bit, but up to almost his shoulders. And my hand won't reach that high! Clayton was the one home to deal with it at first and then when I got home I took a go at it. I consulted with the pediatric orthopedic surgery residents and they said, try to get as much off as possible and there isn't much else that can be done and given the holidays and they couldn't deal (read: not yet qualified) with recasting him anyway. After the holidays I can contact the surgeon's clinic to see if we should do anything. Clayton got the shirt under Ethan's cast off and we got it cleaned...now we will have to figure out how to get it back on.
Friday, December 23, 2011
Wednesday, December 7, 2011
Getting a Cast
Although we were a bit late getting out the door, we got Lorelei dropped off at a friends house by about 6:50 this morning so she could go to school and were on our way to the hospital. Thankfully the roads were good and traffic was light. We had to wait to register, but that wasn't really that long before he was called into the Pre-op room.
Ethan in his fancy new shirt getting ready for the casting.
Although his eye looks open, Ethan fell asleep before his OR time. Not surprising, he was up at 4:30 this morning (as were we)...
Ethan in the recovery room. This cast is much thinner than the last one back to the back. He recovered very well from the casting this time and I think the shirt fits nicely under his cast. The cast is still all rough around the edges because they wanted to adjust it before putting on the final layer.
Ethan's cast was adjusted later in the afternoon and they removed an inch in the length and around his face so he can move more freely. The headphones are to mute the sound of the cast saw. He kept giggling when she was doing the adjustments to the cast. It was pretty cute. :) They did not put on the final layer as they want to see him again in clinic next week in case final touches are required. The surgeon said that they got a better correction with this cast than the last time. :)
All snuggled in for sleep. Hey wait, what's that?! He's home in bed?!? :) He was discharged home today instead of keeping him overnight. He already had a bit of play time on the floor today and with a bit of help it went alright. The good news is the shirts I bought him in May still fit over the cast, so I do not have to buy more t-shirts for him just yet. Thanks for all the good wishes, I'm sure they did him a world of good! :) Now just to keep him healthy...
Ethan in his fancy new shirt getting ready for the casting.
Although his eye looks open, Ethan fell asleep before his OR time. Not surprising, he was up at 4:30 this morning (as were we)...
Ethan in the recovery room. This cast is much thinner than the last one back to the back. He recovered very well from the casting this time and I think the shirt fits nicely under his cast. The cast is still all rough around the edges because they wanted to adjust it before putting on the final layer.
Ethan's cast was adjusted later in the afternoon and they removed an inch in the length and around his face so he can move more freely. The headphones are to mute the sound of the cast saw. He kept giggling when she was doing the adjustments to the cast. It was pretty cute. :) They did not put on the final layer as they want to see him again in clinic next week in case final touches are required. The surgeon said that they got a better correction with this cast than the last time. :)
All snuggled in for sleep. Hey wait, what's that?! He's home in bed?!? :) He was discharged home today instead of keeping him overnight. He already had a bit of play time on the floor today and with a bit of help it went alright. The good news is the shirts I bought him in May still fit over the cast, so I do not have to buy more t-shirts for him just yet. Thanks for all the good wishes, I'm sure they did him a world of good! :) Now just to keep him healthy...
Tuesday, December 6, 2011
Hoping for Well Wishes...
So far we are still on course for Ethan to get his cast tomorrow morning. (You know I'm knocking on wood!) His nurse said his chest sounds very clear and feels he is well enough to get the cast. It has been a hard task trying to keep him healthy, especially with Lorelei having a cold!
For everyone who has heard me gripe (for lack of a better word) about the cost of the shirt we bought to go under Ethan's cast, I thought I would share with you what a $73 shirt looks like.
And this is what it looks like when you pay someone to put a hole into it (for a fee of course ;)).
I just hope it works out well for him. It is supposed to reduce the risk of sores from the cast and to provide more comfort. It is stressing us out a bit though to be honest...not just the shirt but the casting as a whole. I know, after all my griping (there's that word again) and pushing to get him casted again and now we have stress??? Believe it or not this stress is not related to the procedure or the fact we have to try to keep him healthy for a while now...it is bowel movements. That's what the stress boils down to... A week ago we had to administer some PEG Lite at home, it was the first time we've given it to him (he's had it in the past but that was while he was in therapy)...it took about a day to take effect, but then it came and came and softened and loosened and down right turned to water. A week later and it is finally starting to go back to 'normal' which isn't all that solid (nor should it be by the way). But during the past week, we've dealt with a lot of blow outs. Mainly down his legs, but there have been some that have shot up the back. How do we protect the cast/shirt? This is my stress right now. Minor I know compared to other things we've dealt with with Ethan, but I have not been able to find a solution. We have had a couple suggestions, but have not found any that are fool proof. We do not have the luxury of trial and error...we need to succeed to make sure this cast stays on for the whole two months. Any suggestions would be appreciated! We use disposable diapers in case you're wondering. For those who are not used to BM talks - I'm sorry to be so graphic!
On a somewhat lighter note, I thought I would take some pictures of Ethan pre-casting. It might be hard to tell by the photos so I will explain a bit...
Much to our surprise, this one doesn't look as bad as anticipated (or how it has looked in the past)...I hesitate to suggest perhaps his acupuncture has been doing some kind of miracle??? This is the bottom part of Ethan's curve and it is subsequent to the true (and worse) curve up higher.
If you look carefully at Ethan's hips, you can see how they kind of sway up to the right. This can be very pronounced at times.
Here you can somewhat see (pictures aren't that great) the rib humps he has. One is by his Mic-Key button, this rib protrudes a bit more than the other side and up from that you can see a ridge, from what I understand this can be a typical side effect of scoliosis. As the back twists, it starts to affect the rib cage and often creates a hump. On a side note, you can also see the scar on the right hand side from where his port-a-cath used to be. It might be hard to believe, but Ethan has gained a lot of weight since June and actually looks very healthy now. I find his ribs look a bit bony in this picture.
Here you can see the upper part of Ethan's curve and how it is misshaping his right shoulder. I really hope that the casting will show some improvement of the scoliosis. Please keep him in your thoughts.
Here Ethan is ready for bed the night before his casting. He typically wears this soft Boston brace to bed and in his pony walker and standing frame.
He was just so cute on Sunday afternoon during his nap time that I could not resist taking a picture...and then I joined him in a nap. It was very lovely! :)
As for Lorelei, she did seem better with her cold but is coughing a lot tonight and all of her new teeth are starting to come in.
For everyone who has heard me gripe (for lack of a better word) about the cost of the shirt we bought to go under Ethan's cast, I thought I would share with you what a $73 shirt looks like.
And this is what it looks like when you pay someone to put a hole into it (for a fee of course ;)).
I just hope it works out well for him. It is supposed to reduce the risk of sores from the cast and to provide more comfort. It is stressing us out a bit though to be honest...not just the shirt but the casting as a whole. I know, after all my griping (there's that word again) and pushing to get him casted again and now we have stress??? Believe it or not this stress is not related to the procedure or the fact we have to try to keep him healthy for a while now...it is bowel movements. That's what the stress boils down to... A week ago we had to administer some PEG Lite at home, it was the first time we've given it to him (he's had it in the past but that was while he was in therapy)...it took about a day to take effect, but then it came and came and softened and loosened and down right turned to water. A week later and it is finally starting to go back to 'normal' which isn't all that solid (nor should it be by the way). But during the past week, we've dealt with a lot of blow outs. Mainly down his legs, but there have been some that have shot up the back. How do we protect the cast/shirt? This is my stress right now. Minor I know compared to other things we've dealt with with Ethan, but I have not been able to find a solution. We have had a couple suggestions, but have not found any that are fool proof. We do not have the luxury of trial and error...we need to succeed to make sure this cast stays on for the whole two months. Any suggestions would be appreciated! We use disposable diapers in case you're wondering. For those who are not used to BM talks - I'm sorry to be so graphic!
On a somewhat lighter note, I thought I would take some pictures of Ethan pre-casting. It might be hard to tell by the photos so I will explain a bit...
Much to our surprise, this one doesn't look as bad as anticipated (or how it has looked in the past)...I hesitate to suggest perhaps his acupuncture has been doing some kind of miracle??? This is the bottom part of Ethan's curve and it is subsequent to the true (and worse) curve up higher.
If you look carefully at Ethan's hips, you can see how they kind of sway up to the right. This can be very pronounced at times.
Here you can somewhat see (pictures aren't that great) the rib humps he has. One is by his Mic-Key button, this rib protrudes a bit more than the other side and up from that you can see a ridge, from what I understand this can be a typical side effect of scoliosis. As the back twists, it starts to affect the rib cage and often creates a hump. On a side note, you can also see the scar on the right hand side from where his port-a-cath used to be. It might be hard to believe, but Ethan has gained a lot of weight since June and actually looks very healthy now. I find his ribs look a bit bony in this picture.
Here you can see the upper part of Ethan's curve and how it is misshaping his right shoulder. I really hope that the casting will show some improvement of the scoliosis. Please keep him in your thoughts.
Here Ethan is ready for bed the night before his casting. He typically wears this soft Boston brace to bed and in his pony walker and standing frame.
He was just so cute on Sunday afternoon during his nap time that I could not resist taking a picture...and then I joined him in a nap. It was very lovely! :)
As for Lorelei, she did seem better with her cold but is coughing a lot tonight and all of her new teeth are starting to come in.
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