We met with the Neurosurgeon on July 22nd and he went over what they found that there was water on the brain. He wasn't sure what to do until we see the eye doctor since other then headaches he doesn't have any symptoms of the hydrocephalus. So we set up an eye appointment in less than 2 weeks on the 9th of August. So then it was just a sit and wait for the appointment. As we wait we work on getting our house put in order and getting Nikole ready for a trip with family. So we see the eye doctor on Friday(8-9-14) and he was easy going until he looked in Rhett's eyes and instantly told them to page Dr Kestle(Neurosurgeon) and that there was swollen optic nerves. He looked at me and said set up an appointment to come back three months to check his eyes again and have the hydrocephalus taken care, and then again asked someone to page Dr Kestle and walked away. I went down to the office area to see if I could just talk to Dr Kestle before I left the building. He wasn't there so we left and I waited for the phone call from the doctor. Didn't get a phone call Friday, so then it was nail biting through the whole weekend, wondering what the heck was going on. Monday came and I was looking at the phone waiting again. Didn't get a call again! :( So by Tuesday I was stressed to say to say the least. I knew we had an appointment in the afternoon because I set it up when I went to his office to talk with him on Friday. I figured I would get a few things done before the appointment and then just ask why I didn't get a phone call when I see him that afternoon. So.......
(What would you do?) I get a call at 9:30 Tuesday(8-12-14) morning telling me that Rhett was on the schedule for the OR Wednesday(8-13-14)! We hadn't talked to the doctors so it was like we were in the dark. She said that she didn't want me to get a call from the hospital before I knew. Later that day around noon the doctor called me and said he would see us tomorrow. I told him that I wasn't going to have to explain this to Rhett on my own and that Rhett does have a voice and he needs to voice his opinion and be heard. He also needs to understand why the surgery is set for tomorrow and answer all the questions that he has. So he better plan on seeing us at 3:15pm at our time of appointment so he can go over everything with Rhett.
Apparently when we finally saw the doctor that afternoon he informed us that the eye doctor saw swelling optic nerves and some areas that were hemorrhaging. He said that he couldn't say go to school don't worry about it and come back when it is Christmas break. He said that consulting with all the other neurosurgeons that they would treat the hydrocephalus. He said he would not wait until Christmas break to have the surgery. It didn't have to be Wednesday but it should be in a few weeks. We asked questions like crazy and made sure Rhett understood. We gave him the option to have the surgery Wednesday or a different day in a few weeks. He was ok having surgery the on Wednesday that way he could have it before school started. Here is the before surgery pictures.
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I know it is blurry but the grey butterfly in the middle of his brain is the water and it is three times larger than it should be, causing pressure to build in his head. |
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This is a clear picture of the side view and as you can see the water is not draining. |
So this morning we headed out he is fine and happy. Talked to the doctors when we got there and then was taken back almost as soon as we got there, since they were running ahead of schedule and they were all waiting for him. He was the star today!!!
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First time choosing to walk to the OR with the anesthesiologist. |
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The oxygen is too heavy for her to carry. :) Daddy taking a picture of the mark on his head made by the doctor. |
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My favorite picture!!! He is growing up too fast!!! |
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Giving hugs before going off on his own into the OR. |
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My brave boy! Ready or not. |
So Dr Kestle (who by the way is an great doctor) went on the right side of his head near the top front of the head to stick the smallest draining tube they have into the water through the brain and then run the tube down the inside of the body behind the ear down to the abdomen area. When we met with the doctor after surgery and before we saw Rhett, he said that there was an extreme amount of pressure built up. When he put the tube in fluid shot out in a stream which is not uncommon but.... most of the time it drips according to the doctor. He was grateful that we didn't wait and do the surgery at a later time. We were both able to go see Rhett in the recovery room. It used to just be one person at a time, now it is up to two! :) Yeah!!
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In recovery. I asked him if I could take a picture for his sister and he said yes. I got him to smile!! Ok I guess it was his sister that got him to smile, but I am totally taking credit for it. |
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Rhett not enjoying seeing his intubation tube. Told us that we were not going to keep it. So of course I take a picture so I can keep it without actually having it. HAHAHA! |
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He is just relaxing picking out a movie to watch. You can see his three bandages. Top of his head, behind his ear, and near his belly botton. |
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Looking down on him and you can still see the bandages. |
He will hopefully be up and moving better by tomorrow. He says he feels bruised along the right side of his body where the surgery was and that his whole abdomen feel sore.
I will keep everyone as updated as I can, but this has been a whirl wind of a ride for us. This whole thing was also very unexpected since this was only discovered July 16th by MRI. That was less than a month ago!
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