We went in around noon for Addy's CT scan. Since Addy had been up all morning and I figured she would sleep in the car for the whole 45-minute drive, I was about 90% convinced that she was going to need to be sedated for the procedure. When we got there, however, she was wide awake. I'm still not sure whether she slept in the car or not (she was completely silent the whole time).
In either case, she was acting tired and very hungry by the time we got to the waiting room. I had not been allowed to give her anything except a few ounces of water for four hours, so it was no wonder. When one of the nurses saw how Addy was acting, she suggested that maybe I could just nurse her to sleep for the procedure. That sounded good to me, but then another nurse explained that if we did that and it didn't work, we would not be able to use the sedation method, since they have to have an empty stomach for that. In other words, we would have to reschedule if Addy didn't go to sleep after nursing.
Based on how Addy was acting, I decided to take the chance. I know some of you must have been praying for Addy not to have to be sedated (I was, too), because she fell asleep like a charm and stayed perfectly still while the scan was done. No drugs needed -- YAY! The results were great.
Afterward, Addy and I went to see the same doctor (Dr. M) with whom we spoke last time we went to Duke. I had several questions on my mind that I wanted to address, the foremost being whether or not there were any surprises that showed up on the CT scan. Thankfully, there were not. The scan showed a right coronal synostosis (as we already knew), and all other sutures look open and normal. Also, the doc showed me how there was plenty of fluid (i.e. space) between her brain and her skull, so there is no indication of intra-cranial pressure -- a concern of mine, since that can cause headaches and potentially brain damage if it is bad enough. As Dr. M put it, "That is a very comfortable brain." With that in mind, there should be no problems waiting until November to have the surgery.
The remainder of my questions mostly related to the following:
1) Is there anything wrong with her eyes that will need to be corrected in some way beyond the cranio surgery? (If you remember, she has one eye that tends to deviate slightly from the other.) What about her neck / head tilt?
2) Addy has a small, pea-sized lump on the back of her head that I noticed a few weeks ago. What is that, and is it related?
3) What exactly is the road map for the surgery -- i.e., how will you proceed?
The third question was probably the easiest to answer. Dr. M went over exactly what he would be doing during the surgery -- which pieces of bone he would be removing, how he would re-shape them, how he would put it all back together, and what materials he would be using to hold it in place. It was rather fascinating, so long as I didn't think too much about the fact that this would be happening to my baby's head in the near future! Thankfully, it sounds like Addy should have a well-built head and face that should be able to withstand the bumps and bruises she is sure to incur during toddler-hood. (Once she gets past the first 12-15 months post-op, the materials used in the surgery should all be dissolved and it will be her own bone anyway, so not much different than a normal child's head.)
The second question ended up being inconclusive. Dr. M felt the lump and mentioned the possibility that it could be a small cyst on another of her suture lines (which he said happens sometimes -- unrelated to the craniosynostosis). When he looked at the CT scan, however, he couldn't find any evidence of it. He had the radiologist look over it as well, with the same result. So, we are still not sure what the deal is with that. Dr. M said he would look over the scan again and let us know. If it is a cyst, Dr. M made it sound like a fairly simple procedure to get it removed.
The answer to the first question was very informative, though not necessarily all that encouraging. Dr. M said that in about 10% of coronal cases, children will have some kind of strabismus, or lack of eye alignment. He explained that this is because the bones of the head have grown abnormally, and so the muscles of the eye are not quite in the right place. They can be looser than they are supposed to be, so the eye tends to drift a little where the muscle is weak. Sometimes this happens to be corrected with the cranio surgery, but that is pretty rare. Other times, it can be fixed with a regimen of eye patching, to help the muscle strengthen and tighten itself. If that doesn't work, another surgery may be required to tighten the eye muscle. If so, it would probably have to happen as soon as possible after the first surgery heals enough (which should be around 4-6 weeks), since it can cause permanent vision problems if left uncorrected.
As for the head tilt, Dr. M didn't think it was serious enough to need any medical attention, so that at least was a relief.
With these things in mind, here are our current prayer requests:
1) That we would be able to find out what the lump on the back of Addy's head is and get it resolved without too much trouble.
2) That we would be able to get Addy's eyes taken care of as easily as possible and in such a way that her vision would be preserved. Obviously, it would be AWESOME if the cranio surgery would just fix this problem right off, but please pray that the eye patching would work if that is not the case. If she does need further surgery, please pray that we would be able to get through all that as well. Specifically, it would be really nice to get that surgery done before the end of the year, if it is necessary, since we will already be paying our yearly out-of-pocket limit for the other surgery and would have to do it all over again if we had to wait till next year! (This same request would be true if surgery is required for the lump on her head as well.)
Obviously the fewer surgeries, the better, so please be praying that we could get everything resolved in as few surgeries as possible!!!!
3) That God would strengthen and equip us, the doctors, and especially Addy for the days ahead. Please be praying that all would go smoothly, with no complications, and that Addy would do well and heal quickly.
And as a reminder, the surgery is scheduled for November 12th. Please be praying for that date.
Thanks so much again for following along and praying for all this!!!