So, it has been a week since my son had surgery and I am still staring at him all the time! He is completely midline all the time now and I can hardly believe it. I mean, he has been tilted for as long as he has been able to hold up his head and now....straight. It is strange and exciting all in one. I was really nervous about the surgery and anxious about the results, but seeing him now with his head held straight, it shows me that we made the right decision for him. The tilt was kind of cute and didn't seem to bother him...now. But, think about being a growing child and trying to play ball or run around the yard or swim with your head always tilted. Not to mention that torticollis can cause other muscular issues and bone issues later on in life if left untreated.
So, we will go back in 6 weeks to determine the final "result" of the surgery, but for now, we are all more than pleased and he has been healing well and doing great!
Friday, April 29, 2011
Saturday, April 23, 2011
Ocular Tort Surgery
So, on Wednesday, April 20, 2011, our son had strabismus surgery on his left eye to correct his 4th Cranial Nerve Palsy. This condition caused his eyes to be aligned improperly and he had to tilt his head to the right to avoid double vision. It has been a long road, but we are finally seeing the finish line!
We were up early to head to the surgery center and were checked in and ready to go by 7:30 am. Our pediatric ophthalmologist came in for one final look before surgery and just a chance to speak with us again. Then I carried our son back to the OR and they put a mask on him to put him to sleep. He was out in less than 30 seconds. I was in the waiting room at around 7:40 and at 8:05, our doctor was chatting with us about how well the surgery had gone. We waited another ten minutes maximum and then went to the recovery area. Our son was very sleepy...they gave him a little extra sedative to keep him calm so that he wouldn't scratch or rub his eye too much. So, we just sat and held him until he started to get a little more alert. We gave him some juice and water and he drank it down fast and then was sleeping on and off. By 9:00, we were dressed and heading out the door to go home. He slept on the way home (about an hour) and then when we got home and saw his sister and his grandparents waiting for us, he jumped out of my arms and started playing.
He did develop a fever in the afternoon, but he also has had a cough and some congestion, so I think that it was viral and not surgery related (his sister had a fever today). His eye is red in the outer corner and it is swollen under his eye, but otherwise, you would never know!
We did a post-op appointment today and the doctor said that he looked about as good as it can get and that he felt like the results were excellent and he was pretty well "fixed".
We will do another follow-up on June 7 to see how well it looks after it is completely healed.
We were up early to head to the surgery center and were checked in and ready to go by 7:30 am. Our pediatric ophthalmologist came in for one final look before surgery and just a chance to speak with us again. Then I carried our son back to the OR and they put a mask on him to put him to sleep. He was out in less than 30 seconds. I was in the waiting room at around 7:40 and at 8:05, our doctor was chatting with us about how well the surgery had gone. We waited another ten minutes maximum and then went to the recovery area. Our son was very sleepy...they gave him a little extra sedative to keep him calm so that he wouldn't scratch or rub his eye too much. So, we just sat and held him until he started to get a little more alert. We gave him some juice and water and he drank it down fast and then was sleeping on and off. By 9:00, we were dressed and heading out the door to go home. He slept on the way home (about an hour) and then when we got home and saw his sister and his grandparents waiting for us, he jumped out of my arms and started playing.
He did develop a fever in the afternoon, but he also has had a cough and some congestion, so I think that it was viral and not surgery related (his sister had a fever today). His eye is red in the outer corner and it is swollen under his eye, but otherwise, you would never know!
We did a post-op appointment today and the doctor said that he looked about as good as it can get and that he felt like the results were excellent and he was pretty well "fixed".
We will do another follow-up on June 7 to see how well it looks after it is completely healed.
Thursday, April 14, 2011
Pre-Op appointment
Today was our pre-op appointment with the pediatric ophthalmologist that will be doing our son's surgery for 4CNP - 4th Cranial Nerve Palsy. His left eye is affected and they will be moving one of the bottom muscles that control the placement of the eye to another spot on the eye to help it align properly. Right now, his eyes are not aligned, which causes him to tilt his head to the right to compensate....when he doesn't tilt his head, he has double vision. So, the tilt eliminates the double vision. If the surgery is successful, then it will also eliminate the double vision.
The appointment today was quick. The doctor just needed to check him again to make sure that his original measurement was still accurate. Basically there are three approaches to the condition. One is to move the muscle just a short distance, the other is a medium distance, and the third option is to remove the muscle completely. As you can see, these are mild, moderate and severe approaches to the issue. Based on his measurements, our son will need the moderate approach. They never start with the severe approach and only use it when nothing else has worked and there is still a major issue. So, our doctor feels that the alignment issue is moderate and that surgical strategy should work best for our son. I am confident in his measurements and skill. He does this surgery over 10 times a week! So, I know our son is in good hands.
I will update next week after the surgery. We also have a pre-op appointment with our pediatrician for his pre-op physical assessment. This is where we were in January and got stopped when the pediatrician deemed his cold too severe to proceed. It was inconvenient to reschedule, but it really was best for him...he was pretty sick. This time around he appears to have seasonal allergies, so he is sneezing and congested, but not the same as a cold. So, we should be good to go next week!
The appointment today was quick. The doctor just needed to check him again to make sure that his original measurement was still accurate. Basically there are three approaches to the condition. One is to move the muscle just a short distance, the other is a medium distance, and the third option is to remove the muscle completely. As you can see, these are mild, moderate and severe approaches to the issue. Based on his measurements, our son will need the moderate approach. They never start with the severe approach and only use it when nothing else has worked and there is still a major issue. So, our doctor feels that the alignment issue is moderate and that surgical strategy should work best for our son. I am confident in his measurements and skill. He does this surgery over 10 times a week! So, I know our son is in good hands.
I will update next week after the surgery. We also have a pre-op appointment with our pediatrician for his pre-op physical assessment. This is where we were in January and got stopped when the pediatrician deemed his cold too severe to proceed. It was inconvenient to reschedule, but it really was best for him...he was pretty sick. This time around he appears to have seasonal allergies, so he is sneezing and congested, but not the same as a cold. So, we should be good to go next week!
Friday, April 8, 2011
We have a date!
Okay...we have a date for our start of the clinical trial for peanut immunotherapy! We will travel to Duke for our first appointment on Monday, May 9. We will be there Monday, Tuesday and Wednesday for the testing, initial escalation and then his first "daily dose". I am nervous and excited all in one!
The other thing we are waiting on is his eye surgery....scheduled for April 20. I am ready to just get that done and over with so we can move on to the next set of appointments! I am nervous about the anesthesia part, but I am sure he will be just fine...these are great doctors we are working with and they do about 12 of these operations on kids every week!
The other thing we are waiting on is his eye surgery....scheduled for April 20. I am ready to just get that done and over with so we can move on to the next set of appointments! I am nervous about the anesthesia part, but I am sure he will be just fine...these are great doctors we are working with and they do about 12 of these operations on kids every week!
Saturday, April 2, 2011
Focusing on what we CAN do.....
When my son had his reaction to peanut and we started down our peanut-free path, all we could think about was what he would be missing out on and what we had to give up and change. I guess that is what most people deal with when they are faced with an allergy or any kind of medical or life condition that causes you to not be "normal" any more. So, my husband and I have talked a lot about what we can't have in the house and where we can't go because of the allergy. That is survival...a mistake on our part will cause harm to our son, so we have to be cautious.
However, we have now been in the game for over a month and things are starting to look up in a way. I mean, we are still diligent and we are still not out and about like we used to, but now we focus more on things he can have and can do. Another parent told me to focus on living and raising our son to live life to the fullest, even with an allergy!
So, that change of attitude along with the first signs of spring have made me feel a lot better and a whole lot less stressed! I am also feeling really good about getting started with the clinical trial in May and I am hoping that the treatment in the trial will be successful so that our son is able to do all the little things that we were so upset about him losing out on....like his Nan-Nan's famous peanut butter balls at Christmas! :)
However, we have now been in the game for over a month and things are starting to look up in a way. I mean, we are still diligent and we are still not out and about like we used to, but now we focus more on things he can have and can do. Another parent told me to focus on living and raising our son to live life to the fullest, even with an allergy!
So, that change of attitude along with the first signs of spring have made me feel a lot better and a whole lot less stressed! I am also feeling really good about getting started with the clinical trial in May and I am hoping that the treatment in the trial will be successful so that our son is able to do all the little things that we were so upset about him losing out on....like his Nan-Nan's famous peanut butter balls at Christmas! :)
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