Today was the day! We took the two and a half hour drive in Thursday morning rush hour traffic to go to Boston Children's Hospital. We got there fifteen minutes before our appointment but still managed to show up ten minutes late because we got so lost inside the hospital!
At arrival, I completed a very brief medical history on Benjamin. Not much to say when he's in perfect health (aside from his head) and only 2 1/2 months old. We then were brought in to be weighted. He weighted 5.9 kilograms or approximately 13 pounds already! I couldn't believe it.
After that the Nurse Practitioner invited us into her office to discuss his history, concerns, and took measurements of his skull. After all that was done we met the Neurosurgeon, Dr. Proctor. He was wonderful, patient, and not at all pretentious as someone I assumed with his experience and accolades would be!
Dr. Proctor walked us through all about Craniosynostosis and the Metopic Suture. He told us it most likely was NOT genetic as if it were he would have other issues. It fused in the womb and is not the cause of his vomiting after feedings... that was just Benjamin. He also told us, after the surgery and helmet his head would not be fully smooth. It would look less noticeable but the sole purpose of this surgery is to allow the brain to grow and develop not cosmetic!!
Benjamin is currently the perfect candidate for Endoscopic surgery, the least invasive of the two options. He would absolutely need a helmet. Looking at his skull right now about 3-4 months but no longer than his first birthday. His helmet would be fitted in Brockton, MA so a lot closer to home than traveling to Boston.
Dr. Proctor then told us time was very important and that he would need surgery right away. As a result his surgery is scheduled for Monday, January 25th!
He only has a 5% risk of a blood transfusion and we as parents could be direct donors but the risks are so low for transfusion problems that its not necessary. Also being his parents doesn't necessarily mean we would be a match for his blood time. My husband and father still really want to help so if it's to be done it must be done on the day of the Pre-Op (testing) and can not be later or earlier. Best case scenario Benjamin doesn't need it and it will aid another child in the hospital.
Benjamin will need to stay over night in the hospital and we can stay with him, he will have four incisions into the skull and be under anesthesia for it. I can still nurse him before and after but he'll have to fast for four hours prior to the surgery. My husband and I laughed as he is a BIG eater!!
After all of that we met with the scheduler who will call us with his pre-op dates today or tomorrow. So more waiting....
Fingers crossed and prayers said please! I'm getting quite nervous for my baby boy!!
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