Exodus 4:11

Trip to Lubbock Update

Carol, John's mom, and I took Cayla to Lubbock yesterday for a 3D CT Scan and MRI. We left around 6:15 am and I had not slept much the night before so it was a long day.

We drove straight to the oral maxillofacial doctor's office. He is a doctor of dental surgery. He took a long time explaining the procedure to us and answering questions. He said the main reason to have the surgery is to preven problems in the future. Even though Cayla doesn't look bad now it could become worse. Her brain is growing but is molding her head in an awkward way because of the premature closing of the right suture. It would only get worse in time. He also said one reason she doesn't turn her head, but only uses her eyes is because she can see a lot out of the bulging eye. The pressure created on her brain by the closing of the suture could create eye problems also. We asked if this could be genetic and he said there is a chance. John has a small head and has an enlarged optic nerve, so we are thinking and the doctor agreed that he could have had a milder version of this same thing.

So the procedure will be to make a jagged cut from ear to ear across the top of her head. They will peel the skin back and remove the front part of her skull. The doctors will then basically flip it over and put it back in the opposite way. Then her brain will help mold it back into symmetry. They will also manually do some shaping. Then they will use some poly propolene? stuff to build up the eye socket. It is like dissolving stiches but is more sturdy and pliable. After a few years it will totally reabsorb and there will be no traces of it. Any scars will be hidden under her hair. Basically then over time the brain will reshape as it is supposed to. They will also leave some gaps for brain growth. Very scary stuff, but very cool that they figured it all out.

The second doctor was the neurosurgeon. He and the oral guy both said we work as a team and our goal is to make perfect children. Then he said they would call with the results of the scans and that he mainly did them to make sure he has good maps of her head for surgery. He also has to do his own tests to confirm the diagnosis, even though he already had done so. Then they scheduled surgery for Sept. 13. Two days after Zane turns 4. We did that so that if John comes he can be here for both things. We will go on the 12th and have an hour long session learning about the surgery and post op procedures. We will do pre-op stuff on the 12th also.

Then we left and went across to the hopital. I thought we would just check in and they would send us away to wait for the scan time. But they went ahead and took us up to a short stay room. Cayla got fussy, but her "siren" didn't go off. That is her scream that sounds like she is being killed. I knew then that people were praying for her. Carol pushed the stroller down the hall and got her to sleep. They brought Cayla a tiny hospital gown and then started her iv. I left the room for that. Carol had to hold the baby while they did the iv. She said Cayla did well until the iv wasn't working properly and then they had to twist it in her baby arm. That is when she screamed. But after they left Carol held her and we got her to go back to sleep. They came to get us about 1:30 and I got to hold sleeping Cayla as they wheeled the gurney down to radiology. The nurse asked questions and then we had to wait for the radiologist to sign off on the paperwork. So of course Cayla woke up. She was hungry! We had forced her to eat at 9:15 or so, but she didn't really want it and spit a lot out. I had a hard time getting her calmed down, but still no siren. They gave her a test dose of medicine while I held her and she really didn't quiet down. So we put her on the MRI table and one nurse held a pacifier in her mouth and the other administered the medicine. They pushed the full dose and Cayla still wouldn't quiet down. Finally about 10 minutes later she went to sleep. They put some oxygen on her and started the MRI. I got to stay in the room for it, very cool. Boy is that machine loud. They finished that and we went to do the CT scan. The nurse was hoping to give her more medicine just before that test, but Cayla had already had the max dose. So we just prayed she would stay asleep, and she did.

They took us back to the room about 4:00 and we had to wait for Cayla to wake up. She stirred a little here and there, but didn't wake fully until about 5:30. As she was waking up her oxygen level dropped and the machine went off. She was happy and moving, but the alarm kept sounding. Finally the nurse changed leads and sensors and got a real reading. Then her pulse rate was high so the alarm went off again. But the nurse pulled the iv and I nursed the baby and all was well. We left the hospital around 6:15 pm.

Carol and I stopped to eat and called John. He was not talkative and didn't know if he could come for surgery. We did not speak long. I have asked his mom to tell him there is no pressure for him to come. He can come or not it is his decision.

We got back about 10:30 last night. Cayla woke up about 9:30 and Carol gave her a bottle. Then when we got home she took more bottle. She went to sleep around 11:30 and slept until 3:30. She nursed until about 4 and went back to sleep. She woke up at 7:30 and just talked to herself in the bassinet until about 9:00. She was very happy today and not at all upset.

Thanks for all the prayers. I will post shorter updates here periodically. Please feel free to add comments, you can do so anonymously if you don't have a blogger account.