Well, we survived CT scan day. I was looking forward to today, but also dreading it. I was looking forward to getting to talk with the plastic surgeon, and getting to meet the other neurosurgeon, but dreading Gabby being put out for the scan.
So we get down to Children's for a noon radiology appointment. Gabby couldn't eat anything for 4 hours before the appointment. They also recommended sleep depriving her. Great I thought when I heard this. How am I going to get her to not sleep the whole drive down to Milwaukee? And just because she did not nap does not mean she will be put on the table and just fall asleep for them, especially when she is starving. So I decided to go the other route and just see what happens. In order to do the CT scan, you have to lay perfectly still. They prepared us by saying that most babies have to be sedated to have the scan done. Scary. I thought I was ok with it until we got there. We tried to get her to lay on the table for them, as they have the babies try first, before sedating them. Gabby was doing really well, but they didn't think she would be still enough, because she was awake, and had her nook- which they would have to take away. So they had the nurse come in and talk about sedation options. I almost start crying, but hold it in enough to hear the options. IV and have her wake up right after the procedure, or oral and have her sleepy and have to be monitored for 2 hours after the scan? I am thinking oral so she does not get poked, Mark is thinking IV because the medicine is out of her system quicker. I agree with the less meds in the system thought and we go with IV. BAD IDEA. They have a hard time finding a vein in her tiny arm, and finally attempt, only to fail. I am trying to comfort my screaming child, all while trying not to lose it myself. They then try her ankle only to fail there too. NO more we said and they agreed. Gabby was going to have to do the oral after all the trauma already. I felt awful. It took them quite awhile to get the MD orders for the other meds and in that time, Gabby fell asleep in my arms- after she continued to cry and do the baby shudder thing they do. She was wiped out- they agreed to let us try again to have her lay down since she was now asleep- and guess what?! It Worked!! I layed her down, they did the adjustments, even slammed the door ( I was ready to punch someone at that point!) and she stayed asleep- even let me take the nook out! All because she had to be still for- get this--- 5 SECONDS. 5 seconds. You would think someone would invent something that could hold a child still for 5 seconds so you would not have to knock them out! Thank God we did not have to!!!
So after this we met with the neurosurgeon who will be doing her surgery- Dr. Kaufman. He is wonderful! He walked in and was so personable. I know that is not necessary for a surgeon. I just want them to know what they are doing and have steady hands! But it was still nice. He told us to pull up chairs next to the exam table and started drawing pictures of skulls on the exam paper- I can't say I ever had a doctor do that before! He walked us through everything and really explained the surgery, which I could understand now after doing some research. I guess the coronal suture that Gabby has fussed is less common than some. The most common form of craniosynostosis is along the saggittal suture, or the babies with elongated heads. The doctor said the out of one hundred surgeries they do, about 95 are saggittal, 4 are coronal, and one is metopic, or along the back of the head.
We got to see the CT scan. Wow. That is amazing that in 5 seconds they have such an awesome view of her whole head. They spin it around and show all views, view without the top of her skull on, and bottom up. You can really see where the misshaping of her skull is though. That is where Dr. Jensen came in- the plastic surgeon. He does most of the surgery. He opens her up and the neuro takes the skull off for him pretty much. I had a list (a long list) of questions I wanted to ask all scribbled on a paper. Mark took it out and Dr. Kaufman took the list and started answering all the questions. It was really nice, but I was kind of embarrassed too, because 1. it was really, really messy and 2. I was not sure if I should ask all the questions (ie: will her whole head be shaved- um, she has no hair yet!). Regardless he answered some and handed the list over to Dr. Jensen so none of those questions were missed. So I now know that I can see her an hour after surgery and don't have to leave her again, and 2. yes she can still be nursed (probably didn't need a neurosurgeon and a plastic surgeon to tell me that!!).
Now we just have to wait for their secretary to call us with the surgery date. Dr. Jensen agrees with the 6-8 month age range. In fact he said he likes them a little on the older side because then their bones are getting a little harder and when you hear them "crack" into place that is good. Something about the bones staying in place better. I told Mark those plastic guys can keep there cracking commentary to themselves. I really don't want to hear about it. Though it is amazing what they are going to do. He will be using absorbable stitches and plates. There are plates he will be using in her skull which in a years time just absorb. That is crazy. After surgery she gets seen at 10 days, 3 months, and 1 year. At one year they will do another CT scan to make sure all the sutures are doing what they should be doing I guess. I just hope I can get her to lay still for 5 seconds!!!
So we get down to Children's for a noon radiology appointment. Gabby couldn't eat anything for 4 hours before the appointment. They also recommended sleep depriving her. Great I thought when I heard this. How am I going to get her to not sleep the whole drive down to Milwaukee? And just because she did not nap does not mean she will be put on the table and just fall asleep for them, especially when she is starving. So I decided to go the other route and just see what happens. In order to do the CT scan, you have to lay perfectly still. They prepared us by saying that most babies have to be sedated to have the scan done. Scary. I thought I was ok with it until we got there. We tried to get her to lay on the table for them, as they have the babies try first, before sedating them. Gabby was doing really well, but they didn't think she would be still enough, because she was awake, and had her nook- which they would have to take away. So they had the nurse come in and talk about sedation options. I almost start crying, but hold it in enough to hear the options. IV and have her wake up right after the procedure, or oral and have her sleepy and have to be monitored for 2 hours after the scan? I am thinking oral so she does not get poked, Mark is thinking IV because the medicine is out of her system quicker. I agree with the less meds in the system thought and we go with IV. BAD IDEA. They have a hard time finding a vein in her tiny arm, and finally attempt, only to fail. I am trying to comfort my screaming child, all while trying not to lose it myself. They then try her ankle only to fail there too. NO more we said and they agreed. Gabby was going to have to do the oral after all the trauma already. I felt awful. It took them quite awhile to get the MD orders for the other meds and in that time, Gabby fell asleep in my arms- after she continued to cry and do the baby shudder thing they do. She was wiped out- they agreed to let us try again to have her lay down since she was now asleep- and guess what?! It Worked!! I layed her down, they did the adjustments, even slammed the door ( I was ready to punch someone at that point!) and she stayed asleep- even let me take the nook out! All because she had to be still for- get this--- 5 SECONDS. 5 seconds. You would think someone would invent something that could hold a child still for 5 seconds so you would not have to knock them out! Thank God we did not have to!!!
So after this we met with the neurosurgeon who will be doing her surgery- Dr. Kaufman. He is wonderful! He walked in and was so personable. I know that is not necessary for a surgeon. I just want them to know what they are doing and have steady hands! But it was still nice. He told us to pull up chairs next to the exam table and started drawing pictures of skulls on the exam paper- I can't say I ever had a doctor do that before! He walked us through everything and really explained the surgery, which I could understand now after doing some research. I guess the coronal suture that Gabby has fussed is less common than some. The most common form of craniosynostosis is along the saggittal suture, or the babies with elongated heads. The doctor said the out of one hundred surgeries they do, about 95 are saggittal, 4 are coronal, and one is metopic, or along the back of the head.
We got to see the CT scan. Wow. That is amazing that in 5 seconds they have such an awesome view of her whole head. They spin it around and show all views, view without the top of her skull on, and bottom up. You can really see where the misshaping of her skull is though. That is where Dr. Jensen came in- the plastic surgeon. He does most of the surgery. He opens her up and the neuro takes the skull off for him pretty much. I had a list (a long list) of questions I wanted to ask all scribbled on a paper. Mark took it out and Dr. Kaufman took the list and started answering all the questions. It was really nice, but I was kind of embarrassed too, because 1. it was really, really messy and 2. I was not sure if I should ask all the questions (ie: will her whole head be shaved- um, she has no hair yet!). Regardless he answered some and handed the list over to Dr. Jensen so none of those questions were missed. So I now know that I can see her an hour after surgery and don't have to leave her again, and 2. yes she can still be nursed (probably didn't need a neurosurgeon and a plastic surgeon to tell me that!!).
Now we just have to wait for their secretary to call us with the surgery date. Dr. Jensen agrees with the 6-8 month age range. In fact he said he likes them a little on the older side because then their bones are getting a little harder and when you hear them "crack" into place that is good. Something about the bones staying in place better. I told Mark those plastic guys can keep there cracking commentary to themselves. I really don't want to hear about it. Though it is amazing what they are going to do. He will be using absorbable stitches and plates. There are plates he will be using in her skull which in a years time just absorb. That is crazy. After surgery she gets seen at 10 days, 3 months, and 1 year. At one year they will do another CT scan to make sure all the sutures are doing what they should be doing I guess. I just hope I can get her to lay still for 5 seconds!!!
3 comments:
oh my goodness, what a lot for such a little peanut to go through..and poor mommy and daddy.
(Sorry i wasn't able to call you back earlier today, I'll try tomorrow.)
What a strong little peanut. It sounds like a wonderful group of doctors who will take great care of her. Prayers are going strong and will continue to.
My heart aches for you. I will keep Gabby in my prayers. Never be afraid to ask any question. She is your baby and like you said before.. its a routine procedure but not for you. Its okay to cry. I cried like a baby when Katie got her tonsils out. It just shows the deep emotional love you have for your child. You are a GREAT mother.
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