Because of notes like these. (posted with permission)
---------------------------------------------
Hi,
Just found your blog in a desperate search...
Our six year old daughter is having her bone graft in Seattle on March 4th, Pre-op on Feb. 9th. This will be her fourth surgery to date. You would think it would get easier. I feel like I'm going to crack pretty much all the time now.. these last few weeks are brutal. Really hard to explain to my other mom friends. They are supportive, but have really no idea why I feel so (what is the right word here..... anguished?) over this up coming surgery. Maybe because they haven't had their kid look them in the eyes, pleading for you to help them, to not let the doctors do xyz to them... to see that kind of fear in their child...
Anyway, it's helped me so much to read your posts of the last few weeks. Thank you so much for writing them.
I has really meant so much to me.
J
Friday, February 5, 2010
Monday, January 25, 2010
11 days post op
His post op appointment is tomorrow. Things are going well. I can't wait to hear what Dr. T. says. I try looking in there but I have no idea what I'm looking at in there, and mainly what it looks like is weird. I have no basis for comparison.
His swelling has really gone down.
His swelling has really gone down.
He has been being a normal boy for the past few days. I would have sent him to school today, but they had a teacher workday so it was another day at home. The post op appointment is tomorrow right before lunch. I will remember the leapster and didj this time, so maybe it won't take so long. Or if it does, maybe it won't feel so long.
You can see he's still a little puffy right around his nose. He has that Who from Whoville look going on. But even compared to a couple of days ago, he looks really good!
Wednesday, January 20, 2010
6 days post op
I need to order some rope to tie him down.
He only needs ibuprofen for pain, now. And if he didn't still need a nap I might be tempted to send him to school. But I think we should probably play it safe and keep him home for the rest of the week.
He only needs ibuprofen for pain, now. And if he didn't still need a nap I might be tempted to send him to school. But I think we should probably play it safe and keep him home for the rest of the week.
He looks good though! Only a little swelling left!
Monday, January 18, 2010
Monday night
Rowan had a great day today. Connor came to play this morning, and Robbie came over this afternoon. He's a little sore tonight from moving around too much, but I swear I would have to tie him down to keep him still. Isn't that wonderful?
Tonight's swelling pic, with most of the color taken out because the light was so bad.
He's starting to look more like Rowan!
And a few of you keep wanting to know about what his hip looks like. I was surprised at how small the incision was. It is healing very well.
Tonight's swelling pic, with most of the color taken out because the light was so bad.
He's starting to look more like Rowan!
And a few of you keep wanting to know about what his hip looks like. I was surprised at how small the incision was. It is healing very well.
Monday morning
We had a small breakthrough last night.
Rowan willingly looked at himself in the mirror on his way to bed. He has been avoiding all mirrors, and would hold his stuffed tiger over the lower half of his face when he went in to use the bathroom so he wouldn't have to see himself. It's been very sad to see, but I understand. He just doesn't look like himself too much, and he didn't want to see that.
He also willingly looked at the stitches on his hip - something else that he's been avoiding.
He's feeling much better. I've had to say something to him this morning about trying to run (awkwardly).
"Rowan, don't run. It's too soon for that."
"I'm not running, Mom. I'm just jogging."
"Well, don't jog either. Not yet."
He's back!
Rowan willingly looked at himself in the mirror on his way to bed. He has been avoiding all mirrors, and would hold his stuffed tiger over the lower half of his face when he went in to use the bathroom so he wouldn't have to see himself. It's been very sad to see, but I understand. He just doesn't look like himself too much, and he didn't want to see that.
He also willingly looked at the stitches on his hip - something else that he's been avoiding.
He's feeling much better. I've had to say something to him this morning about trying to run (awkwardly).
"Rowan, don't run. It's too soon for that."
"I'm not running, Mom. I'm just jogging."
"Well, don't jog either. Not yet."
He's back!
Sunday, January 17, 2010
Quickie update
Rowan is doing very well. He's still very swollen. I realize that all of you are wondering and probably don't want to wait for me to get my ducks in a row and write about it. Sorry, I forgot to consider that.
So here is Rowan, playing Wii yesterday (2 days post op) and having some jello this morning (3 days post op)
2 days post op
3 days post op
So here is Rowan, playing Wii yesterday (2 days post op) and having some jello this morning (3 days post op)
2 days post op
3 days post op
Saturday, January 16, 2010
2 days post op
He's doing very well. Dr. T. was able to get enough bone to fill in all his gaps, and he also removed 4 teeth.
Rowan came home from the hospital yesterday, and was very low for a while. He didn't sleep well while there, and I think he was a little afraid of falling asleep even though he was home. He was very weepy and sad.
After he took a nap he felt MUCH better. He ate a whole can of spaghetti-os and he and John traded beds for the night so I could sleep with him. He got a great night of sleep last night, and has been moving around pretty well today. He's figured out a way to walk that looks really funny (like he has to pee) but it's working for him and doesn't hurt.
He is VERY swollen and does not like to look in the mirror. I am taking pictures, but have not taken the time to write it all out here as I usually do. That will come later when I have a little more time for it.
I think he's doing very well though. He's not in very much pain, and we are making sure to keep on top of those meds for these first couple of days. I'm so proud of him. He's handling everything like a champ.
Rowan came home from the hospital yesterday, and was very low for a while. He didn't sleep well while there, and I think he was a little afraid of falling asleep even though he was home. He was very weepy and sad.
After he took a nap he felt MUCH better. He ate a whole can of spaghetti-os and he and John traded beds for the night so I could sleep with him. He got a great night of sleep last night, and has been moving around pretty well today. He's figured out a way to walk that looks really funny (like he has to pee) but it's working for him and doesn't hurt.
He is VERY swollen and does not like to look in the mirror. I am taking pictures, but have not taken the time to write it all out here as I usually do. That will come later when I have a little more time for it.
I think he's doing very well though. He's not in very much pain, and we are making sure to keep on top of those meds for these first couple of days. I'm so proud of him. He's handling everything like a champ.
Wednesday, January 13, 2010
One last thought on the night before
For me, in all of this, the waiting for surgery is the worst part.
Once we get to here, to the night before when we're doing things like having Mom here and doing the crunchy party and packing --
when I can finally DO something about my situation...
That's when I even out and do okay. That's when life becomes livable again.
I'm still prone to weepiness, but it's not fear driving it. I know in my heart that God will hold him and guide his doctors' hands.
It's just that he's my baby.
It's the main reason why I keep this blog, network with the parents, and work with cleftAdvocate and AmeriFace... Doing something changes things. It keeps it from being something that happens to us and turns it into something that we're working through.
So thank you all, for being there with me. For caring about my boy.
I'm going to be leaving Niall and Eleri here with my mom tomorrow.
You might want to say a few prayers for her, too.
Once we get to here, to the night before when we're doing things like having Mom here and doing the crunchy party and packing --
when I can finally DO something about my situation...
That's when I even out and do okay. That's when life becomes livable again.
I'm still prone to weepiness, but it's not fear driving it. I know in my heart that God will hold him and guide his doctors' hands.
It's just that he's my baby.
It's the main reason why I keep this blog, network with the parents, and work with cleftAdvocate and AmeriFace... Doing something changes things. It keeps it from being something that happens to us and turns it into something that we're working through.
So thank you all, for being there with me. For caring about my boy.
I'm going to be leaving Niall and Eleri here with my mom tomorrow.
You might want to say a few prayers for her, too.
Tuesday, January 5, 2010
Pre-op for the bone graft
WOWZA. It was a really long day.
We got there at 1, but they were running behind (when are they not?) so it was over an hour before we got back to the room. Once we were in the room, we saw the chief resident, Dr. A. for the initial stuff. He had a look in Rowan's mouth, looked at his chart, and ordered x-rays.
More waiting, and Dr. A. came back, surprised that we hadn't had x-rays yet. He decided to go on with other stuff in the meantime, and right when he did the x-ray person showed up. (of course)
So we went off to x-rays and Rowan konked his head on the chair when he jumped in with enthsiasm. He's my kid. But it was okay, and they did small x-rays of the top of his jaw to get a good picture of his cleft - so they'd know if they needed to graft both sides. (They do.)
Back to Dr. A., where he did the exam and talked to Rowan about what would be done, answered questions, explained the consent form, and did all that.
Then on to Dr. T. (more waiting) Dr. T. is awesome though. Talked to Rowan first about what he was going to do and how, and made sure Rowan understood just what was going on. Then he pulled up the x-rays, looked in Rowan's mouth, at the x-rays... mouth... x-rays... mouth... it got to be pretty entertaining as he figured out what his teeth had been up to in there. (A lot of crazy.) He said that he will remove some teeth as he does the graft, possibly up to 5! But they'll be baby teeth or extra teeth. Rowan is part shark. But he needed a panoramic x-ray to be sure he could see the roots to know what tooth was what, so it was back to radiology for that. They were closing, but Dr. A. grabbed someone and got them to do it, and hung out with us to make sure it was a good one before sending us over to the big hospital for pre-care.
Pre-care is the pre-admitting thing, where they give you instructions and what not. By this time it was 5:00, but Dr. A. had called over and told them we were coming, so they were there waiting for us. They checked his BP and pulse-ox, gave us the special soap, told us that we won't get the surgery time until the day before, BUT he can have clear liquids up to 2 hours before we're supposed to be there. YAY! Then we found out that Rowan needed another x-ray, of his hips. So we went to radiology (a different one this time) for that.
We left the hospital at about 6pm. So all in all, 5 hours. His actual surgery should be shorter than that.
Now, the big questions, answered....
1. How long will the surgery take? A couple of hours.
2. How long will he be in the hospital? Most kids only need to stay one night.
3. How long will he need to stay home from school? About 10 days or so. His post op is 10 days after surgery, too, so that works out well.
4. How long will he need to eat a soft diet? About 6 weeks.
5. What about pain? His hip will be more sore than his face. He'll feel pressure and numbness in his face more than pain. They'll give us tylenol with codeine for the pain, and Dr. T. will inject a local anesthetic into his hip while he's still in the OR to help out. Physical therapy might send us home with a crutch if he needs it to help walk.
6. How is Rowan handling it? It's kind of hard to tell. He says that he's doing things to help him feel more brave and not so scared, but he is scared. I told him that was okay, because I'm scared, too. And it's okay to be scared and even to cry if you want to. He is also very matter of fact about it, saying that this surgery is one of the HAVE TO instead of the WANT TO surgeries (like his nose would be) so since he has to do it there's not much to be done about it. They gave him a teddy bear in pre-care today, and he's named it Dr. Bear. It's from Build-A-Bear, so I think I'm going to go by there over the next couple of days and get Dr. Bear some scrubs to wear. He was walking around the hospital and dental school like he owned the place, and chatting up all the nurses, so he IS comfortable there. He knows he had surgery there when he was a baby, so that helps. And we're going to give him a send off at school on Wed, and have a bunch of crunchy snacks to share with his friends, since he won't be able to have crunchy things for a long time. He's focusing more on that, and on other positive aspects like all the pudding that is on the horizon.
7. How am I handling it? Deep breathing, being positive for Rowan, crying by myself when I get overwhelmed. You do what you gotta do.
Any other questions? Just ask. I'll answer them as best as I can.
We got there at 1, but they were running behind (when are they not?) so it was over an hour before we got back to the room. Once we were in the room, we saw the chief resident, Dr. A. for the initial stuff. He had a look in Rowan's mouth, looked at his chart, and ordered x-rays.
More waiting, and Dr. A. came back, surprised that we hadn't had x-rays yet. He decided to go on with other stuff in the meantime, and right when he did the x-ray person showed up. (of course)
So we went off to x-rays and Rowan konked his head on the chair when he jumped in with enthsiasm. He's my kid. But it was okay, and they did small x-rays of the top of his jaw to get a good picture of his cleft - so they'd know if they needed to graft both sides. (They do.)
Back to Dr. A., where he did the exam and talked to Rowan about what would be done, answered questions, explained the consent form, and did all that.
Then on to Dr. T. (more waiting) Dr. T. is awesome though. Talked to Rowan first about what he was going to do and how, and made sure Rowan understood just what was going on. Then he pulled up the x-rays, looked in Rowan's mouth, at the x-rays... mouth... x-rays... mouth... it got to be pretty entertaining as he figured out what his teeth had been up to in there. (A lot of crazy.) He said that he will remove some teeth as he does the graft, possibly up to 5! But they'll be baby teeth or extra teeth. Rowan is part shark. But he needed a panoramic x-ray to be sure he could see the roots to know what tooth was what, so it was back to radiology for that. They were closing, but Dr. A. grabbed someone and got them to do it, and hung out with us to make sure it was a good one before sending us over to the big hospital for pre-care.
Pre-care is the pre-admitting thing, where they give you instructions and what not. By this time it was 5:00, but Dr. A. had called over and told them we were coming, so they were there waiting for us. They checked his BP and pulse-ox, gave us the special soap, told us that we won't get the surgery time until the day before, BUT he can have clear liquids up to 2 hours before we're supposed to be there. YAY! Then we found out that Rowan needed another x-ray, of his hips. So we went to radiology (a different one this time) for that.
We left the hospital at about 6pm. So all in all, 5 hours. His actual surgery should be shorter than that.
Now, the big questions, answered....
1. How long will the surgery take? A couple of hours.
2. How long will he be in the hospital? Most kids only need to stay one night.
3. How long will he need to stay home from school? About 10 days or so. His post op is 10 days after surgery, too, so that works out well.
4. How long will he need to eat a soft diet? About 6 weeks.
5. What about pain? His hip will be more sore than his face. He'll feel pressure and numbness in his face more than pain. They'll give us tylenol with codeine for the pain, and Dr. T. will inject a local anesthetic into his hip while he's still in the OR to help out. Physical therapy might send us home with a crutch if he needs it to help walk.
6. How is Rowan handling it? It's kind of hard to tell. He says that he's doing things to help him feel more brave and not so scared, but he is scared. I told him that was okay, because I'm scared, too. And it's okay to be scared and even to cry if you want to. He is also very matter of fact about it, saying that this surgery is one of the HAVE TO instead of the WANT TO surgeries (like his nose would be) so since he has to do it there's not much to be done about it. They gave him a teddy bear in pre-care today, and he's named it Dr. Bear. It's from Build-A-Bear, so I think I'm going to go by there over the next couple of days and get Dr. Bear some scrubs to wear. He was walking around the hospital and dental school like he owned the place, and chatting up all the nurses, so he IS comfortable there. He knows he had surgery there when he was a baby, so that helps. And we're going to give him a send off at school on Wed, and have a bunch of crunchy snacks to share with his friends, since he won't be able to have crunchy things for a long time. He's focusing more on that, and on other positive aspects like all the pudding that is on the horizon.
7. How am I handling it? Deep breathing, being positive for Rowan, crying by myself when I get overwhelmed. You do what you gotta do.
Any other questions? Just ask. I'll answer them as best as I can.
Subscribe to:
Posts (Atom)