Oh what a day! It was much much crazier than I expected. I guess the dr. made it sound so simple that when I pictured surgery I hardly even pictured blood!
Anyway, the case is called endoscopic secondary craniofacial reconstruction.
Here's how our day went:
5:30 am. wake up calvin to take his epilepsy meds and get ready to go
6:45am Dave arrived with Calvin at the hospital and did all the check in stuff. Calvin was not cooperative for any of that. Bad sign. Especially when Dave was with him. He usually does really well with dave. However, we had just had the worst weekend I can remember. Absolutely awful so it was a tough beginning under any circumstances.
I stayed home to get the girls settled in with my friend who came over to watch them, bless her!
7:45 I arrive just in time to see the surgeon and anesthesiologist come by and say hi/answer questions.
8:10 Dave escorts Calvin to OR - he is completely uncooperative and combative as Dave drags him back to the room. He is restrained and crying as he falls asleep with the mask.
8:15 Dave and I go get food while we wait.
9ish Dr. Cohen comes out to meet us in the lobby to say the surgery went really well. Dave puts on his white coat to go round on a couple of patients he operated on yesterday.
10ish We are invited back to see Calvin in the PACU. His head is wrapped. He had started to stir a bit and was upset so they gave him something - percoset maybe- to help him rest again so he is pretty sound asleep.
10:30 Calvin wakes up very upset. Screaming about his head hurting and how the wrap is too tight. He tries to pull out iv's and pull off the head wrapping. They give him demoral. Dave requests no more demoral so then they give him versed. Then he is screaming about pain so they give him morphine. Then they give him morphine. It freaked me out to see them giving him so much medicine! Since he is screaming and so mad we move to a private room. While wrestling with Calvin (I was holding down one side and Dave was holding the other) I start to feel sick with worry about how we made the wrong choice doing an elective procedure on him and that the complications of him messing up his wound or causing injury to his head will be way worse than if we never even did the surgery. I am so worried sick that I start to black out. I tell dave to hold Calvin's arm so that I can sit before I pass out. I lay down on the floor and the nurses take my spot. for the next 30 minutes I am useless. I sit in a chair at the foot of Calvin's bed and put my head down. Every few minutes I ask Dave if I look okay yet and he says no!! HA! what a circus! When I finally feel better I go to McDonalds to get some food for Calvin hoping that if he gets something in his system he'll become rational again. When I get back to the room he has fallen asleep in dave's lap (where dave had been holding to restrain him from pulling out his IV). By now Calvin has so many drugs in his system now he is out cold. First he sleeps on dave's lap for an hour but then dave moves him back to his bed where he sleeps for the next several hours.
Oh, I should say that at some point in all this they decided to take off the headdress knowing that there was no way it would be on his head for 24 hours as instructed.
2pm Calvin wakes up in a lot of pain again.We give him tylenol with coedine and try to give him food/drink but he takes about 1 sip of gatorate and one bite of cracker and then falls asleep again. . He sleeps again and wakes up an hour later nauseated but on an empty stomach has nothing to throw up.
3pm Wakes up dry heaving again and then right back to sleep.
Around 4:30 we decided we should try to start waking him to see if he would rouse enough for us to get home. We are setting a world record for length of stay in the PACU. We wake up Calvin and he is cheerful and ready to go home! HURRAY! He eats a little bit of his happy meal from hours before (yuck) and is super excited about leaving. We get ready and put him in a wheel chair and stop by the cafeteria to get the worlds best cookies.
4:45 heading home
He rides home with Dave and I drive myself. By the time Dave/Calvin reach the pharmacy in our neighborhood Calvin is throwing up his food. He arrives home at 5:45 back asleep and dave carries him in to the couch.
8:30 awake and hungry. He takes a few sips of gatorate and a few bites of banana bread and gets 2 pills down (antibiotic and tylenol). He still has 4 pills to take so hopefully he'll keep the first two down and then wake in another hour and be able to take those (epilepsy meds and tenex for sleep (not that he needs it to sleep tonight but it is one you can't stop taking cold turkey)).
9:30. I am pooped! What a day! It was so much more stressful and strenuous than I thought. Last night I slept on the couch so that if he got up in the night I'd hear him and stop him from eating before surgery. Tonight I'll probably sleep in his room so that I am near him if he needs anything.
Calvin has had general anesthesia several times before and has never had such a reaction as today. It usually takes an hour or two for him to wake up and then he's ready ot have a snack and leave for home. Plus, we usually stop for a big breakfast on the way home and he's never had a problem keeping food down. I think it was different today since he got so many meds after waking up + he does have some pain and I know that contributes to overall feeling. I hope tomorrow he feels better and is ready to start eating a little bit so he has enough energy to get around. He is too tired to even walk to the bathroom right now.
PS. Calvin woke up at 11pm to throw up more! poor child! After this episode, he finally felt feeling better. After having slept ALL DAY he was wide awake and chipper and ready to hang out! Dave stayed up with him from 11pm-2am watching Spiderman and playing Monopoly. At 2 I got up with him and watched Phineaus and Ferb and he fell asleep on the couch around 3. I made a bed on the other couch and slept with him 'til around 5:30. He was awake and feeling well so I went back to bed in my own bed for a couple of hours before the day began.
Day 1 post op. Calvin has been doing really well today. He feels good. No more sore throat or nausea. He has eaten a few meals and had a good day of TV, nintendo and a few errands when he felt up to it. He also got a good nap in today! He woke up a little swollen and has continued to swell throughout the day. Now (bedtime) he is so swollen his eyes are just little slits. Hopefully the worst is tonight so that he isn't swollen shut when he wakes up in the morning. Since he didn't keep on his head dress he has more swelling than the Dr. would have anticipated but it won't interfere with the outcome, it will just take longer to heal. He is taking tylenol around the clock and that is plenty to help him not have a headache.
Another PS. Dave will have to read this and edit drug names to make sure what I have is accurate.
I will also add a few pics
Wednesday, November 21, 2012
Sunday, November 18, 2012
surgery this week
Ever since we moved to SD 6 years ago we have had our follow up craniosynostosis visits with Dr. Cohen once a year or every other year. Dr. Cohen has told us that he thought the brow revision would be a good idea so this has been something that has been on our mind for some time. Calvin is scheduled for surgery Tues to revise his brow. His brow is very recessed over the left eye making for an asymmetrical face. Everyone who looks at Calvin thinks he looks just fine. However, the asymmetry is magnified and very profound when looking at Calvin in a mirror. We thought it would be best to do what we can to help him feel good about the way he looks and views himself. We also thought it would be best to do this procedure while we are here in SD so Dr. Cohen could do the operation for us. He is one of the best in the world at cranio facial plastics. Surgery is Tues morning 8am. We scheduled it about 8 months ago, holding this spot during thanksgiving week so Calvin wouldn't have to miss much school since the kids are already out on Thanksgiving break.
To entice Calvin to cooperate at dr. appointments we always give him some kind of treat afterwards. For easy appointments it is a slurpee, a candy or something simple like lunch at In-N-Out. I think Dave has grown to expect lunch at In-N-Out for himself if he comes along also. For larger appointments, especially if Calvin needs to cooperate for lengthy testing or has to skip meals in preparation for the appointment, we usually offer him something more valuable such as trip to the store to let him pick a toy (within a set price range) . Calvin recently had an MRI as part of a study for UCSD. He laid perfectly still for 45 minutes in the MRI machine (miracle of miracles) to earn himself a monopoly game he really wanted. Prior to that he fasted 2 meals to get a Darth maul light saber. This time he has to fast in the morning and spend an hour or two cooperating with nursing staff (and after that he'll be asleep) and he is very excited to earn another Monopoly game.
Since Calvin is earning a new toy he is super excited about this upcoming surgery! He is counting down the days. And, as difficult a child Calvin can be, he is very often a very sweet patient.
Surgery entails a 2 cm incision right behind the hair line where the dr. will insert liquid bone. dr. will mold bone on brown and around orbit to how he thinks it should look and then let it sit for a few minutes before closing the incision. The bone will set within a few hours and then get completely hard/strong over a few weeks. Eventually Calvin's bone will grow over the matrix.
Praying things go well for him and that things go smoothly. If they do, we'll be home by noon the same day. Also hoping things look good on his face when it is all done.
After surgery we will take a 2 week break from general PE type stuff and 6 week break from gymnastics while the liquid bone sets completely.
To entice Calvin to cooperate at dr. appointments we always give him some kind of treat afterwards. For easy appointments it is a slurpee, a candy or something simple like lunch at In-N-Out. I think Dave has grown to expect lunch at In-N-Out for himself if he comes along also. For larger appointments, especially if Calvin needs to cooperate for lengthy testing or has to skip meals in preparation for the appointment, we usually offer him something more valuable such as trip to the store to let him pick a toy (within a set price range) . Calvin recently had an MRI as part of a study for UCSD. He laid perfectly still for 45 minutes in the MRI machine (miracle of miracles) to earn himself a monopoly game he really wanted. Prior to that he fasted 2 meals to get a Darth maul light saber. This time he has to fast in the morning and spend an hour or two cooperating with nursing staff (and after that he'll be asleep) and he is very excited to earn another Monopoly game.
Since Calvin is earning a new toy he is super excited about this upcoming surgery! He is counting down the days. And, as difficult a child Calvin can be, he is very often a very sweet patient.
Surgery entails a 2 cm incision right behind the hair line where the dr. will insert liquid bone. dr. will mold bone on brown and around orbit to how he thinks it should look and then let it sit for a few minutes before closing the incision. The bone will set within a few hours and then get completely hard/strong over a few weeks. Eventually Calvin's bone will grow over the matrix.
Praying things go well for him and that things go smoothly. If they do, we'll be home by noon the same day. Also hoping things look good on his face when it is all done.
After surgery we will take a 2 week break from general PE type stuff and 6 week break from gymnastics while the liquid bone sets completely.
bittersweet
We have been so blessed over the last year as everything for Calvin has fallen into place to help us find the perfect school for him, the right medication and correct doctors. We are so fortunate. That being said, I think I am still trying to wrap my head around the idea that I have a handicapped child. I think one of the reasons it is hard to fully comprehend is because he is mildly handicapped. He has a normal IQ and serious behavior problems and coping issues. There is a possibility that he will progress enough to function normally. His story is not yet fully written and we don't know how things will turn out.
I guess the trick to survival is to live one day at a time and not to look forwards or backwards too much, but sometimes I can't help it.
A year ago, Calvin was still in mainstream school. I still thought he might be able to survive there. I thought he might belong there. As I look back at this I think to myself how crazy it is to think that I believed this. It was super stressful to send him to school knowing it could be disastrous. I remember last summer I sent him to a summer camp with the girls. I think it was for 2 hours for 3 days that week. I was not even out of the parking lot on the first day before the camp called to tell me that they could not handle him. It was stressful sending him places and not knowing if he would handle it. Now I have a better idea of what would work for him and what wouldn't. It is bittersweet. In so many ways, it is better to face things as they really are. To know I can't sign up my kid for summer camps, can't send him to parties or other activities without an adult, can't get a babysitter. This is the safest way. There are no surprises and no disasters. But it is also hard.
Another balance that I seem to struggle with in meeting reality is in my expectations. Should I expect absolutely nothing from Calvin? No chores, no homework, etc. etc. or should I be pushing him to do better and be better. How do I push him without causing him to crumble and fall apart?
A friend of mine told me God only gives us what he knows we can handle. I should feel flattered that God gave me a challenge that I think I can't handle. And I also fell humbled to know that there are so many people whose challenges are so much more difficult and painful and are faced with grace faith.
And while we are looking backwards I should acknowledge one more HUGE blessing in this last year of great change. Dave has been home a lot. In a career of a lot of schooling followed by a lot of work it is a miracle that he has been home to help me and to experience all of these changes with me. He has been home more in this year than he has ever been since and probably will ever be in the future. I am so thankful.
I guess the trick to survival is to live one day at a time and not to look forwards or backwards too much, but sometimes I can't help it.
A year ago, Calvin was still in mainstream school. I still thought he might be able to survive there. I thought he might belong there. As I look back at this I think to myself how crazy it is to think that I believed this. It was super stressful to send him to school knowing it could be disastrous. I remember last summer I sent him to a summer camp with the girls. I think it was for 2 hours for 3 days that week. I was not even out of the parking lot on the first day before the camp called to tell me that they could not handle him. It was stressful sending him places and not knowing if he would handle it. Now I have a better idea of what would work for him and what wouldn't. It is bittersweet. In so many ways, it is better to face things as they really are. To know I can't sign up my kid for summer camps, can't send him to parties or other activities without an adult, can't get a babysitter. This is the safest way. There are no surprises and no disasters. But it is also hard.
Another balance that I seem to struggle with in meeting reality is in my expectations. Should I expect absolutely nothing from Calvin? No chores, no homework, etc. etc. or should I be pushing him to do better and be better. How do I push him without causing him to crumble and fall apart?
A friend of mine told me God only gives us what he knows we can handle. I should feel flattered that God gave me a challenge that I think I can't handle. And I also fell humbled to know that there are so many people whose challenges are so much more difficult and painful and are faced with grace faith.
And while we are looking backwards I should acknowledge one more HUGE blessing in this last year of great change. Dave has been home a lot. In a career of a lot of schooling followed by a lot of work it is a miracle that he has been home to help me and to experience all of these changes with me. He has been home more in this year than he has ever been since and probably will ever be in the future. I am so thankful.
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