Screw Out!

We've noticed a bump on the side of Jayen's head for an incredibly long time, pretty much since the day it was put in. But it kept getting bigger and bigger to the point where we were scared it would catch on hair clippers the next time he got his hair cut. After meeting with a neurosurgeon here, we decided it would be best for the screw to be removed. Well, today is that day!

This morning we woke up long before the rooster would even think about crowing! We had to be at the hospital by 5:30 in the morning and it is nearly a 40 minute drive from our house to the hospital. We had been talking to Jayen to prepare him for what was going to happen today. We are really trying to let him take an active role in his medical journey. We told him that they were taking the screw out today. He repeated, "screw out?". Yep buddy, today they are taking the screw out.

Jayen was a little too chipper for that early in the morning, but I was just glad he wasn't upset or fighting us about it yet. After checking in and getting lost trying to find the right floor, we sat down to do a little homework before we were called back.

When they finally called us back, we changed Jayen into his scrubs and were able to talk to the doctors before the procedure. The neurosurgeon fellow came in to talk to us and asked if we had any questions. I rattled off as many as my brain could articulate. When I came to the question of where and how she was going to cut, I wasn't prepared for her answer. She told us she was going to re-open his previously incision so she wouldn't loose any more blood flow to that area. Ummmm....WAIT, you are going to re-open the entire right side of his skull to get to this screw? Will there be the same swelling as the first time? Will you look to see if the others screws are still intact while you have him that open? What will recovery be like if you are opening that whole area again? I couldn't keep my mind from remembering what it was like the first time. I couldn't keep the tears from rolling down my face. I wasn't prepared for this.

After I couldn't think of any more questions to ask, she left the room. Right behind her was a nice gentleman from Child Life. Whomever invented this position and made it a necessity in the children's hospitals is a genius. We really loved the Child Life specialists in Minnesota. They helped us explain situations to Jayen in a way he would understand and gave him the opportunity to get comfortable with some of the equipment. This gentleman brought in two different masks that would be used for anesthesia. In the past these masks have caused Jayen incredible agony. We have even tried putting smelly chapstick inside to make him want to put it over his mouth and nose, but every time they go to put it on him he refuses and turns into the Hulk. For some reason, this time, playing with the masks and putting them on mom and dad and picking out which one he wanted to use really helped.

Dr. Adelson, the neurosurgeon, came in right before surgery and asked if we had any questions. Once again I wanted to confirm that he wasn't going to have the same amount of swelling as the first surgery. Dr. Adelson told us that he was only going to make a little incision about the screw and recovery would be minimal. Jayen wouldn't be allowed to remove the bandage for three days and wouldn't be able to submerge his head underwater for two weeks. But otherwise would be fine within a couple hours of the surgery. Well, I liked that approach much better. That was more of what I had prepared for. What the heck was the previous heart attack for then? Ummm you might want to discuss your approach with your fellow!!!!!

The nurse came in and quickly whisked Jayen off to the operating room and sent us out to the waiting area. I couldn't sit there and wait. So we headed down to the cafeteria to grab something. While there we were able to meet up with a mommy I had met at Jayen's therapy center. Their daughter was there for some testing and they happened to run to the cafeteria for a quick second too. It was so nice to see her and her husband and share a quick hug and laugh. But it literally was a quick second because just a short time later we got a call from the nurse asking to meet the doctor in the consult room. We rushed back upstairs and waited for Dr. Adelson.

In the consult room, Dr. Adelson informed us that everything went well and Jayen would be in the recovery room shortly. He even told us that Jayen didn't fight the anesthesia mask at all! What a champ! Being able to play with it ahead of time really helped! Jayen has really become such an integral part of his own medical team. I need to remember to value his input and feelings more.
We had asked to keep the screw; for some crazy sentimental reason! The hospital was so nice and obliged, but their policy is that it had to go through a sterile processing first.
We met back up with Jayen in the recovery room and realized that while he was still under general anesthesia we should clip his toe nails. It is literally like trying to tie down a pissed off rattle snake if he knows what you are doing. There were no clippers on the recovery floor, but one super nice nurse ran to another floor and grabbed one for us. But Jayen was already waking from the anesthesia when she arrived back with the clippers. Matt did the best he could to clip away while I tried to soothe Jayen. Even while still half drugged the kid wanted nothing to do with his toe nails being clipped.
We eventually got through all ten toenails, but it came with lots of tears and screams. Jayen was rewarded with a clear pop. Which, at the time, I thought would be a reward. After a huge burp from the bubbles in the pop, I was rewarded with toes covered in pop filled vomit. The bubbles must have been too much for him because twice he decided that my sandals needed a little extra paint! We took the pop away and tried to just sit and wait patiently for the screw to come back from the cleaners. I was pretty jealous of dad and the amazing snuggles he was getting from our usually ever constant moving child. After nearly an hour, our screw arrived in a sealed container with Jayen's hospital information attached. We were ready to hit the road and head to our next appointment.

Yeah, mommy didn't want to take Jayen out of school another day, so I scheduled an appointment with our pediatrician for the same day just later in the morning. This appointment was just a formality to make sure Jayen could continue to get ABA services. We literally just had to show up and mention the word ABA and the doctor could put in the referral for us. What a joke! Well at least we could check that one off the list and not have to miss another day of school for it.

When we got home, Jayen was showered with hugs from sister and rewarded with a requested game of wii bowling. Whatever you want little man. I love you and am so proud of you!