My son was born with Metopic Craniosynostosis and this is my diary and notes of our journey. Please note that I am not a doctor and I have no medical training, this is only our experience and some research I've found while learning about this birth defect.
Wednesday, January 20, 2016
Pre-Op
So today was Pre-Op at Children's Hospital in Boston. We arrived at 8:30 for our 9 AM appointment (leaving the house at 7 am, ugh). When we arrived we checked in at Pre-Op to be told that they will see us at 9:30 and not earlier... no big deal as we were starving so we ran down the hall to Au Bon Pain for some breakfast.
At 9:30 we headed back into Pre-Op and was greeted by a medical staff who had us strip down Benjamin head to toe and she measured and weighted him (all the measurements were in metric... I thought that was interesting), and then took his blood pressure and oxygen levels. Once she was done we were returned to the waiting room.
After waiting about ten/fifteen more minutes we were lead in to meet a Nurse Practitioner who took both my and my husbands medical history. She also wanted to know our parents and sibling history as well. That was interesting as my family is long and my husbands is short. She then asked what felt like a million questions about Benjamin. His health, his behavior, his birth, his development/milestones. Being 3 months old there really wasn't much to say. She was able to rule out genetics (as did Dr. Proctor ) just by his history. She did feel his fussiness and vomiting could be due to the heavy pressure the metopic bone has against his nasal bone and eyes. She then walked us through the check in process for Monday and how surgery will go.
For surgery on Monday, we must arrive at 6 AM for surgery at 7:30 AM. She did warn us that even though that was the time given by Dr. Proctor we won't have our true time until Friday night! Benjamin cannot nurse four hours prior to the surgery and no clear liquids (i.e. water, pedialyte, sugar water) two hours prior to the surgery. The Nurse Practitioner gave us two infant size portions of pedialyte to try since I told her, he was an eater! Once Benjamin goes in with the surgeon we can't see him until he's moved into recovery. The surgery is expected to take two hours long and we will have a nurse assigned to use who will give us updates every ninety minutes. Since it's only two hours long we would then only receive one update. Once he is in recovery we can then go in and see him. She told us only one parent can stay over with him as there is only one space for him however parents are allowed to visit 24 hours. My husband said no problem he can sleep on the floor and she stressed that this was never allowed... now we need to decide does he get a hotel or sleep in a "desk" type chair?! We did not qualify for the Ronald McDonald House as that is reserved for cancer patients but there are other families in the area who open their doors to parents. She did not go over wound care, the helmet, or after surgery. Once she was done she took Benjamin's vitals a second time and we were sent back to the waiting room.
After a few more minutes we were greeted by the Anesthesiologist. He took us back to explain his exact process in putting Benjamin to sleep. He informed us at his age and weight the amount needed to place him to sleep is so minimal that they barely can count to three. He also told us that the entire time during the surgery he is in the room constantly monitoring the vital signs and checking on Benjamin to make sure no complications arise. He explained how endoscopic is a fairly simple surgery that moves quick. This is excellent as there is next to no risk for issues with anethstesia. We asked about side effects and I stressed how worried I was after an employee where I worked has problems after having routine surgery due to the anesthstesia. He said for Benjamin the worst would be vomiting. He also asked us if we wanted to be there as Benjamin went to sleep. My husband and I elected not to as personally I don't think I could handle that. The doctor thought it was very wise as our feelings are mirrored by the babies and could cause unnecessary additional stress.
When he was done with us we were brought back to the waiting area and sent up to "the lab" to have blood drawn. He went down the hall and waited for about a half hour. This was probably the worst part of the day. I don't do well with having my own blood drawn. I am fine with blood. I've cut myself, helped my husband when he's cut himself, other family members. I've given birth twice with no concerns, watched animals give birth, watched a chicken get killed, etc but I cannot donate blood as I faint or swell up. Apparently when Benjamin had blood drawn... I can't handle that either I nearly fainted right down. It made for an interesting afternoon. I felt so nauseous the whole afternoon too! Benjamin was miserable. Two phlebotomists had to hold him down to draw from his thigh... just seemed so cruel. After that was over we went back to Pre-Op. We were told we'd meet with the Neurosurgery nurse but she informed the desk she didn't need to see us. I was a little bothered by this as I had several questions but I guess we'll get them answered on Monday.
Finally, we went upstairs to the Department of Neurosurgery to drop off my Family Medical Leave Act paperwork. This will certainly help with work for both me and my husband. Dr. Proctor is going to complete it for us and give it to me on Monday. I did ask the receptionist about why Benjamin never had a MRI or CT Scan and the reason was they don't want to expose them to any unnecessary radiation. I guess that's excellent and he is an expert but I just don't want any surprises on Monday!!
So now we're left to decide do we get a hotel Sunday night to ease getting up Monday morning for surgery or does my husband get a hotel Monday night to help Tuesday when I will most likely be exhausted?? UGHH fun times.
Now I sit here fretting just waiting to get through Monday. It's going to be a long long week and worse made by the snow storm coming Saturday night!
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