Thursday, April 5, 2012
The start of a "new" year for us.
Russell has recently begun treatment for PIS (Progressive
Infantile Scoliosis), through body casting. He had his first cast put on March
26. That day, picking him up from the bed they wheeled him back in after
surgery, it dawned on me that I wasn't as ready as I'd thought I was for this.
That there was no way I could have been ready to deal with this. No, it's not
as horrible as it could be. Yes, it's worse than I'd like it to
be.
Russell was diagnosed with PIS in July of 2011, by his pediatrician. I'm so grateful to her for picking up on that. I'd noticed that he sat "crookedly", like more on one side of his bum than the other, but I figured it was just part of being a flexible baby. That started the road of multiple x-rays (he's had more than a dozen x-rays since then), multiple treatment options, and the overwhelming news that this will be going on at least until he stops growing. My mind immediately jumped to thoughts of my cousin, KaeVe, in her body casts while we were growing up. So I was devastated with the news of scoliosis.
The doctors were very confusing. One said that we'd just "watch and see". That we should take no action, and just wait to see if it got worse. He said it most likely would get worse, and that he'd eventually be in a brace and have multiple surgeries down the road. This didn't set well with us. So we went for a second opinion. The next doctor, from Shriner's hospital, told us that with Russell's measurements (45* curve, with a 45* RVAD) he had a VERY high risk of his curve progressing. However, he said, there was possibility of a cure. Casting. (OK, this totally freaked me out, thoughts of my cousin in a body cast made me terrified of this option(no offense KaeVe!)) But then there was good news; it's a new type of casting, called Mehta casting, which uses the quick growth of the baby to correct the spinal curve, not just keep it from worsening. It has to be started before Russell turns two, to be the most effective.
After a lot of discussion, research, and most importantly, fasting and prayer (including our families on both sides), we decided to go with the Mehta casting method. We got the go-ahead at our appointment at Shriner's in January. From there, we set a casting date: March 26. I joined a support group, C.A.S.T., and read everything I could on PIS. ISOP is a great place to learn more. This is where I learned how blessed we are to live as close as we do to SLC Shriner's hospital. The Dr's there have been personally trained by Dr Min Mehta in the Mehta casting method. There are only a few hospitals that currently have the ability to do this casting method, and they are all in the US and England. There are people that live in Australia and South America who fly to SLC to be casted there. I am so grateful that Heavenly Father blessed us to live as close as we do to this place that has the best treatment for Russell. I hope more facilities become available closer to these people who have to travel so far right now.
I read almost daily before the cast was on, learning what that would entail.
Then the day came. We arrived at Shriner's by 8:30am. (We were 30 min early, having misjudged how long it would take us to get there in traffic. But that was just fine.) Russell had his last drink at 9am, when we checked in. It's a blur to remember how many people, drs we met that morning. It is a much smaller hospital than Primary Children's, which was good and bad.
Good because it had a more personal feel, and because everyone was very attentive to us and to Russell. Also good because we got to wait in Russell's room(given to him as soon as we got there) the whole day, instead of being with 20 other parents who also had children in surgery. Much more calm and relaxing to be by ourselves, in our own room.
Bad because there was only the one surgeon, and they'd started a complicated 5 hour surgery at 9am. Russell was supposed to go in at 10 am. I'm not sure why they didn't call us before we left Orem to have us come in later. But they didn't. So Russell waited until 1:30pm to go back. He was a VERY hungry and tired little boy by that time. Very frustrating for us.
The surgery involved full anesthesia, breathing tube to inflate his lungs full of air as they casted, untwisting his spine, and of course applying the plaster cast. Kind of funny that they still call it surgery, even though there was no actual "surgery", like no knives. They brought him back to the room we were in about two and a half hours after taking him. They said he did really well. He was already awake before they brought him back. At Primary's we always got to be with our kids while they were waking up, not sure why it's different at Shriner's. In a way, I liked it better, because he woke up with the nurses and drs, and it seemed like he blamed them for the cast, and then when he saw us, he just wanted comfort.
Which was incredibly hard to give. The cast covers his whole torso, with a mushroom-shaped cut-out in front, and rectangular cut-out in back. It is a plaster cast, which cannot get wet, cannot come off (until it's cut off), and cannot bend at all. He was pretty scared, and pretty mad about it. It was heart-breaking, even though we knew beforehand it would be hard. It's very hard to give a cast a hug. And he just wanted a hug. I can't tell you how many times this has been the hardest part of the whole ordeal. Baby Einstein movies were the only thing that calmed him down. Sort of. But after another couple of hours, and getting him to eat a bit, we were discharged. Before this though, they showed us his x-rays. The drs were very happy and proud of the awesome numbers. His curve had gone down to 19* and his RVAD was 0*. Seriously amazing. Another blessing from the Lord.
Going home was nice. some of the drs and nurses had asked us if we wanted to stay overnight. I knew from our experience after Krysta's surgery how much I hate that option. I knew it would be so much better for all of us to get away from the hospital and go to my mom's house. I"m soooo glad that we didn't have to stay.
Russell didnt sleep too much that night. Neither did Scott. (Thank you thank you dear!) The next morning was still so sad and hard for all of us. Russell couldn't sit straight up anymore, because of how low the cast goes past his hips. The cast weighs about 5 lbs., so at that point, he couldn't get up on his hands and knees to crawl, he couldn't roll over, he couldn't stand, etc. Basically, he could just lay on his back. And cry. We left my mom's by 8am because we had to get to Shriner's before 10,so they could check his cast before we went home. They did end up loosening the front and back a bit before we went home. He did pretty good all the way home, watching more Baby Einstein movies.:) But when we got home, all the crying and sadness and anger came back. I think that in the car, he's used to being strapped down and unable to move. But when we got out of the car, that was when reality set in again for him. I held him alot that day, which didn't really seem to help him and made my back hurt a lot.
That night, after he was in bed, I decided that the next day, I wasn't going to be so helpful and carry him as much. It wasn't helping him and it wasn't good for my back. So the next day, I got him up and fed him and left him on the floor. He was pretty mad at first, but by the end of that day, he figured out how to stand up by pulling on the couch cover. He still couldn't roll over, or walk, or crawl, but he could stand up. Since then he's made so much progress. He can pull himself to standing if there is something nearby to pull up with. He can walk with help. He has gone up the stairs two times (very exhausting work). And just yesterday, he learned how to roll from his back to his tummy, and then to get up on his knees. He walks on his knees now. He's amazing. It's been 11 days since the cast was put on.
What you can't see in
these two pictures, is that the cast actually goes down past where his
pants/waist is.
Our next casting date is
May 22. I'm going to try to blog everyday. He's going to need 4-5 casts in
all, hopefully, which should take us about a year, give or take a little. I'm
going to blog about it, because it feels so overwhelming to me right now. Maybe
it will help me see the progress we've made as time goes on. I do know that it
will help me to see the hand of the Lord in our lives as time goes on and I
learn a lot this year (so far I've learned more about how to diaper in a cast
that can't get wet, what to do when said diaper leaks anyway, how to dress a
17-monthold in a cast, how to wear a bib almost all day, how to put padding down
on the high chair and car seat so that it doesn't hurt his legs, how to hold him
in a way that it doesn't hurt him, how to "petal" a cast, how to duct tape a
cast, how to change the knit-rite shirt under the cast and decide I'll never do
it again, how to sponge bathe in a cast, how to apply for a handicap decal,
just to name a few):) . I know that Heavenly Father loves us. I know He loves
Russell. I know that this will all work our for our good, right now. I really
do believe that this is a blessing for us. I just can't see it yet. I know
things will get better, but right now, it feels like this huge YEAR is LOOMING
in front of me with all kinds of unknowns and hardships. And yes, I know it
could be worse. But this is difficult for me. And for our family. So I repeat
what I said at the beginning. No, it's not as bad as it could be. But yes,
it's worse than I'd like it to be.
Russell was diagnosed with PIS in July of 2011, by his pediatrician. I'm so grateful to her for picking up on that. I'd noticed that he sat "crookedly", like more on one side of his bum than the other, but I figured it was just part of being a flexible baby. That started the road of multiple x-rays (he's had more than a dozen x-rays since then), multiple treatment options, and the overwhelming news that this will be going on at least until he stops growing. My mind immediately jumped to thoughts of my cousin, KaeVe, in her body casts while we were growing up. So I was devastated with the news of scoliosis.
The doctors were very confusing. One said that we'd just "watch and see". That we should take no action, and just wait to see if it got worse. He said it most likely would get worse, and that he'd eventually be in a brace and have multiple surgeries down the road. This didn't set well with us. So we went for a second opinion. The next doctor, from Shriner's hospital, told us that with Russell's measurements (45* curve, with a 45* RVAD) he had a VERY high risk of his curve progressing. However, he said, there was possibility of a cure. Casting. (OK, this totally freaked me out, thoughts of my cousin in a body cast made me terrified of this option(no offense KaeVe!)) But then there was good news; it's a new type of casting, called Mehta casting, which uses the quick growth of the baby to correct the spinal curve, not just keep it from worsening. It has to be started before Russell turns two, to be the most effective.
After a lot of discussion, research, and most importantly, fasting and prayer (including our families on both sides), we decided to go with the Mehta casting method. We got the go-ahead at our appointment at Shriner's in January. From there, we set a casting date: March 26. I joined a support group, C.A.S.T., and read everything I could on PIS. ISOP is a great place to learn more. This is where I learned how blessed we are to live as close as we do to SLC Shriner's hospital. The Dr's there have been personally trained by Dr Min Mehta in the Mehta casting method. There are only a few hospitals that currently have the ability to do this casting method, and they are all in the US and England. There are people that live in Australia and South America who fly to SLC to be casted there. I am so grateful that Heavenly Father blessed us to live as close as we do to this place that has the best treatment for Russell. I hope more facilities become available closer to these people who have to travel so far right now.
I read almost daily before the cast was on, learning what that would entail.
Then the day came. We arrived at Shriner's by 8:30am. (We were 30 min early, having misjudged how long it would take us to get there in traffic. But that was just fine.) Russell had his last drink at 9am, when we checked in. It's a blur to remember how many people, drs we met that morning. It is a much smaller hospital than Primary Children's, which was good and bad.
Good because it had a more personal feel, and because everyone was very attentive to us and to Russell. Also good because we got to wait in Russell's room(given to him as soon as we got there) the whole day, instead of being with 20 other parents who also had children in surgery. Much more calm and relaxing to be by ourselves, in our own room.
Bad because there was only the one surgeon, and they'd started a complicated 5 hour surgery at 9am. Russell was supposed to go in at 10 am. I'm not sure why they didn't call us before we left Orem to have us come in later. But they didn't. So Russell waited until 1:30pm to go back. He was a VERY hungry and tired little boy by that time. Very frustrating for us.
The surgery involved full anesthesia, breathing tube to inflate his lungs full of air as they casted, untwisting his spine, and of course applying the plaster cast. Kind of funny that they still call it surgery, even though there was no actual "surgery", like no knives. They brought him back to the room we were in about two and a half hours after taking him. They said he did really well. He was already awake before they brought him back. At Primary's we always got to be with our kids while they were waking up, not sure why it's different at Shriner's. In a way, I liked it better, because he woke up with the nurses and drs, and it seemed like he blamed them for the cast, and then when he saw us, he just wanted comfort.
Which was incredibly hard to give. The cast covers his whole torso, with a mushroom-shaped cut-out in front, and rectangular cut-out in back. It is a plaster cast, which cannot get wet, cannot come off (until it's cut off), and cannot bend at all. He was pretty scared, and pretty mad about it. It was heart-breaking, even though we knew beforehand it would be hard. It's very hard to give a cast a hug. And he just wanted a hug. I can't tell you how many times this has been the hardest part of the whole ordeal. Baby Einstein movies were the only thing that calmed him down. Sort of. But after another couple of hours, and getting him to eat a bit, we were discharged. Before this though, they showed us his x-rays. The drs were very happy and proud of the awesome numbers. His curve had gone down to 19* and his RVAD was 0*. Seriously amazing. Another blessing from the Lord.
Going home was nice. some of the drs and nurses had asked us if we wanted to stay overnight. I knew from our experience after Krysta's surgery how much I hate that option. I knew it would be so much better for all of us to get away from the hospital and go to my mom's house. I"m soooo glad that we didn't have to stay.
Russell didnt sleep too much that night. Neither did Scott. (Thank you thank you dear!) The next morning was still so sad and hard for all of us. Russell couldn't sit straight up anymore, because of how low the cast goes past his hips. The cast weighs about 5 lbs., so at that point, he couldn't get up on his hands and knees to crawl, he couldn't roll over, he couldn't stand, etc. Basically, he could just lay on his back. And cry. We left my mom's by 8am because we had to get to Shriner's before 10,so they could check his cast before we went home. They did end up loosening the front and back a bit before we went home. He did pretty good all the way home, watching more Baby Einstein movies.:) But when we got home, all the crying and sadness and anger came back. I think that in the car, he's used to being strapped down and unable to move. But when we got out of the car, that was when reality set in again for him. I held him alot that day, which didn't really seem to help him and made my back hurt a lot.
That night, after he was in bed, I decided that the next day, I wasn't going to be so helpful and carry him as much. It wasn't helping him and it wasn't good for my back. So the next day, I got him up and fed him and left him on the floor. He was pretty mad at first, but by the end of that day, he figured out how to stand up by pulling on the couch cover. He still couldn't roll over, or walk, or crawl, but he could stand up. Since then he's made so much progress. He can pull himself to standing if there is something nearby to pull up with. He can walk with help. He has gone up the stairs two times (very exhausting work). And just yesterday, he learned how to roll from his back to his tummy, and then to get up on his knees. He walks on his knees now. He's amazing. It's been 11 days since the cast was put on.
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