There was something I forgot to write about and that was our decision whether or not to have Calvin operated on. Initially when we found out Calvin had craniosynostosis we were not sure whether or not we should operate on him. The operation, though not life threatening and super dangerous still had risks such as the risks with general anesthesia, bleeding, brain damage or in worst case even death. And because the surgery is cosmetic we wondered if it was really necessary. We also wondered what a craniosynostosis adult would look like if they don't get the operation (called cranial vault Reconstruction) done as a baby. These questions weren't fully answered butt as far as we could tell from our research it was the best and most accepted treatment.
There was actually a woman in our ward at the time, who had had the cranial vault reconstruction as a baby over 20 years earlier. She let us feel her head (not perfectly round) and assured us she had turned out fine! It was nice seeing her. She had a different suture that had been sealed than Calvin's so her deformation was on the skull only, not her face. Her scar was not visible at all thanks to some beautiful thick hair.
okay, now back to the story :
The preparation for surgery wasn't too bad. We had several Dr. appointments to make sure things were all okay. The surgery was to be about 5 hours start to finish and would be performed by the neurosurgeon (who does the opening of the skull just in case there is any problem) and the cranial-facial surgeon who does the majority of the case -- opening up the skull so that there is a suture line and also restructuring the brow and skull. We learned that the scar would run from ear to ear across the top of the head and would zig-zag to help hide the scar in the hair. We were prepared for a week long hospital stay after the surgery and made arrangements to stay at the Ronald McDonald house adjacent to the hospital. Dave's mom made plans to come out and help so that the baby would never need to be left alone in the hospital (and dave couldn't stay in Cleveland and miss a full week of medical school).
Babies bleed a lot during the surgery and require a blood transfusion during the operation. We decided to do a directed donation from myself to Calvin. I remember getting the paperwork for this was a pain, but it worked out eventually. Those of you who know I am a huge weenie when it comes to all things bloody know that this was a sacrifice for me. I had previously passed out at the dentist office where I was not even the patient, in my lab when I sliced my thumb, and while serving as moral support for a friend who was draining a bloody fingernail. I don't like to see blood!!
One of the things that I was worried about was the fact that Calvin had to be fasted for his surgery. He was still waking up in the night occasionally to nurse and always ate first thing in the morning and he would not be able to do either. Everything worked out well for us though. I woke him up and fed him at around 10 or midnight to feed him knowing that he wouldn't be able to eat again before surgery. When he got up in the morning we got ready and left quickly and once we were at the hospital there was enough commotion to keep him busy and occupied so he never reached that point of being hungry and inconsolable. This was a tender mercy. I thought for sure he'd be screaming while we waited for surgery to begin. They always give the littlest patients the earliest start so that they don't have to fast as long during the day. We had to be there around 6 or 6:30am.
Everything went very smoothly the day before (check-in, blood work and leading up to the operation). I was thankful.
The operation went well too.
to be continued...
*You may be wondering why the heck I'm writing this all out now.....there are 2 reasons. First, I thought it would be good to have for future reference. Second, our craniosynostosis story continues today so in order to be current with everything that is going on now, some background is necessary.
**That being said, this story will be many parts. Some of you, maybe even all of you will die of boredom before it's over, but I want to get it all out here.
***I don't have any digital pictures to add. I don't have a scanner so I need to figure out how to digitalize some of my old pics and add those to the story at some point.
Wednesday, November 30, 2011
Tuesday, November 29, 2011
our craniosynostosis story
background: Calvin was born in FEB 2003 just as I was finishing up my masters in cell biology and dave was finishing up his chemical engineering degree.
When Calvin was born his face/head looked a little funny. After a very difficult delivery we just figured his skull was misshapen as can often happen during childbirth, especially if the baby spends a lot of time in the birth canal.
When we went in for our 2 week appointment, the head shape was still a concern to us. The pediatrician said we shouldn't worry. So we didn't. However, it was still somewhat of a concern that Calvin's head was asymmetrical and didn't seem to be correcting.
At our 2 month appointment we pressed the pediatrician to answer our question about why Calvin's head still looked funny. He asked Dave to take of his hat so that he could see if Dave's head looked funny too. (looking back this dr. was a moron, but at the time I didn't know that I should find a new dr. if I didn't like the one I had)! Since we insisted Dave's head was perfectly fine, the Dr. agreed to do an x-ray of Calvin's head. When we got word back we were told he had a sealed L coronal suture. Craniosynostosis.
A normal skull looks like this:
A skull with a fused coronal suture looks like this:
another description:
this image shows how the other bones, sutures compensate when the coronal suture fuses early
AFter our xray we had another scan done to get a better image of the skull and we also had an ultrasound to check and make sure the brain was healthy (it was).
We consulted with doctors to figure out what would be the best course of treatment. Most doctors like to do surgery on the craniosynostosis babies at around 6 months old. This was a precarious time for us because exactly 6 months after Calvin was born we would be moving from UT to OHIO so dave could start med school.
We hatched plan. . . Calvin would have surgery mid-august. Dave would be in SLC for the surgery and a couple of days post-op. I would stay a couple of extra weeks for recovery and then join dave in ohio. After we graduated BYU I moved to my grandparents house to wait for surgery and make my hands bleed, washing and purell-ing everything trying to keep Calvin healthy so he would be ready for elective surgery AUG 14th.
The day before surgery we were at the hospital doing the pre-op blood work when we got a call from somebody in the hospital. Our surgeons retina had detached and HE (THE Surgeon) was currently in surgery getting his eyes operated on. He would be out of the office for an indefinite amount of time -- at least a month. EARTH SHATTERING news for us. We were devastated.
We decided to go ahead to Ohio and find a new dr. there. We heard the guy at Columbus Childrens was not the best so we went up to The Cleveland Clinic on the recommendation of our SLC doctor who knew and loved the cranialfacial surgeon there. Dr. Papay. The Cleveland Clinic had great facilities and was about 2.5 hours away from us in Columbus.
Surgery for craniosynostosis is done by a team of surgeons. A craniofacial plastic surgeon and a neurosurgeon.
Calvin's surgery was scheduled for OCT 1st. just shy of his 8 month mark. I was extremely stressed about getting the surgery done at the right time but it seemed to be within the right window of time.
to be continued. . .
When Calvin was born his face/head looked a little funny. After a very difficult delivery we just figured his skull was misshapen as can often happen during childbirth, especially if the baby spends a lot of time in the birth canal.
When we went in for our 2 week appointment, the head shape was still a concern to us. The pediatrician said we shouldn't worry. So we didn't. However, it was still somewhat of a concern that Calvin's head was asymmetrical and didn't seem to be correcting.
At our 2 month appointment we pressed the pediatrician to answer our question about why Calvin's head still looked funny. He asked Dave to take of his hat so that he could see if Dave's head looked funny too. (looking back this dr. was a moron, but at the time I didn't know that I should find a new dr. if I didn't like the one I had)! Since we insisted Dave's head was perfectly fine, the Dr. agreed to do an x-ray of Calvin's head. When we got word back we were told he had a sealed L coronal suture. Craniosynostosis.
A normal skull looks like this:
A skull with a fused coronal suture looks like this:
another description:
this image shows how the other bones, sutures compensate when the coronal suture fuses early
AFter our xray we had another scan done to get a better image of the skull and we also had an ultrasound to check and make sure the brain was healthy (it was).
We consulted with doctors to figure out what would be the best course of treatment. Most doctors like to do surgery on the craniosynostosis babies at around 6 months old. This was a precarious time for us because exactly 6 months after Calvin was born we would be moving from UT to OHIO so dave could start med school.
We hatched plan. . . Calvin would have surgery mid-august. Dave would be in SLC for the surgery and a couple of days post-op. I would stay a couple of extra weeks for recovery and then join dave in ohio. After we graduated BYU I moved to my grandparents house to wait for surgery and make my hands bleed, washing and purell-ing everything trying to keep Calvin healthy so he would be ready for elective surgery AUG 14th.
The day before surgery we were at the hospital doing the pre-op blood work when we got a call from somebody in the hospital. Our surgeons retina had detached and HE (THE Surgeon) was currently in surgery getting his eyes operated on. He would be out of the office for an indefinite amount of time -- at least a month. EARTH SHATTERING news for us. We were devastated.
We decided to go ahead to Ohio and find a new dr. there. We heard the guy at Columbus Childrens was not the best so we went up to The Cleveland Clinic on the recommendation of our SLC doctor who knew and loved the cranialfacial surgeon there. Dr. Papay. The Cleveland Clinic had great facilities and was about 2.5 hours away from us in Columbus.
Surgery for craniosynostosis is done by a team of surgeons. A craniofacial plastic surgeon and a neurosurgeon.
Calvin's surgery was scheduled for OCT 1st. just shy of his 8 month mark. I was extremely stressed about getting the surgery done at the right time but it seemed to be within the right window of time.
to be continued. . .
Sunday, November 27, 2011
10 things a Dr's wife does not want to hear
#10. BEEP, BEEP, BEEP, BEEP
#9. Of course I know everything!
#8. (the phone call at 8pm). We just added on another case.
#7. Trust me. I'm a Doctor! (countless children of dr's accidently conceived thanks to this misplaced trust)
#6. I can't commit to that. I'm on call.
#5. Can you hold my pager for a minute?
#4. Let's drive two cars in case I get called in.
#3. I was so tired driving home... to keep myself awake . . . I had the windows down, ate, turned the music up, and ran a couple of red lights!
#2. I'm covering for .... because he has plans that he doesn't want to miss.
#1. (getting this call at 6am) Babe, I forgot my pager at home today, can you please keep it with you all day and then call me every time it goes off to let me know what it said?
#9. Of course I know everything!
#8. (the phone call at 8pm). We just added on another case.
#7. Trust me. I'm a Doctor! (countless children of dr's accidently conceived thanks to this misplaced trust)
#6. I can't commit to that. I'm on call.
#5. Can you hold my pager for a minute?
#4. Let's drive two cars in case I get called in.
#3. I was so tired driving home... to keep myself awake . . . I had the windows down, ate, turned the music up, and ran a couple of red lights!
#2. I'm covering for .... because he has plans that he doesn't want to miss.
#1. (getting this call at 6am) Babe, I forgot my pager at home today, can you please keep it with you all day and then call me every time it goes off to let me know what it said?
Tuesday, November 15, 2011
contacts
Calvin has been asking for contacts for years. This year we decided to see if it would be something he could try. His prescription is pretty severe so we were not sure if it would even be possible. However, our eye dr. said he could try them. Since he only needs it in one eye it is a bit more affordable also! Anyway, we went to the contact lens fitting this week. The optician said Calvin was the easiest lens fitting patient she has ever had! how's that for news....it's not something I hear very often. The lens fit very well so she ordered some contacts in Calvin's prescription. We will pick them up in a few weeks. This could be life changing! Calvin has worn glasses since he was 3. I am happy for him!
Jo is more and more darling all the time. She is also quite chubby. She is transitioning from sleeping everywhere on the go to only wanting to sleep in bed. It is nice she'll take such great naps in bed but I miss being able to be out and about all day and know she will just sleep when she needs to. It is hard to get her the sleep she needs with the other kids' school schedule. Not to mention I need to grocery shop, etc. If Jo had it her way she'd be awake for an hour and then sleep for 2-3 hours.
I took some beautiful pics of lex and clare on the swings sunday afternoon. WE often go to the park on Sunday afternoon with the entire family (including tressel). It is good for everyone to get out and enjoy the beautiful days!
Jo and I liked the swing too!
Where is dave right now? How did I get this precious computer time? He is playing super mario bros on wii. Apparently Calvin recently deleted all of their progress so he has been playing lots to catch up!
Wednesday, November 2, 2011
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