Ben's surgery was today and he will be just fine, but it was quite a dramatic day in all.
5:30am - We arrived at hospital and checked in.
6:30am - Ben's getting fussy and hungry, we went through weight (16lbs 9oz. and length 27 in.)
7:00am - We moved downstairs to pre-op with Ben and waited with several other babies getting ready for surgery.
7:30am - We handed the baby over to the nurse who took him to the operating room.
10:30am - We were told Ben's surgery was starting now and they had a difficult time starting IVs and he would be bruised all over his arms and legs.
11:30am - The initial incisions were made, but then two IVs clotted. They stapled his incision closed and turned him back over to get more IVs open. Then the other two clotted and Dr. Sami had to start a large emergency IV in Ben's thigh until the anesthesiologist started a direct line into Ben's heart. They then added several more IVs in his groin and wrist.
12:15pm - Dr. Sami came out and explained what happened and that now they were starting the surgery all over essentially.
1:15pm - Dr. Sami came back and said the most dangerous part of the surgery is over (removing the skull), and now Dr. Shah is reshaping the bones that were removed.
3:30pm - Dr. Sami visited with us again and said the surgery is over.
4:30pm - Josh and I were able to see Ben in PICU.
When they opened Ben's head, you couldn't even tell he had a surgery prior to this one. He had multiple sutures closed, more than just the original one. That level of bone closure would have definitely led to brain damage and further neurological problems and they focused on his forehead and the top of his head to get the best correction in shape and to allow for brain growth.
Unlike our original plan, they did not address the back of Ben's head because the surgery lasted much longer than expected and he lost three times the blood that they anticipated. He will most likely need a helmet for six months, and we may need more than one helmet because his head will grow. The surgeons were aggressive with removing the overgrowth of bone, but still said they accomplished about thirty percent of the correction he would need to have a "regular" head shape. We will reevaluate his need for further surgery at age three unless any problems arise between now and then.
Ben will be in PICU for the next couple of days and he still has breathing tubes in and the IV going into his heart, as well as several other IVs and a catheter. He will continue to be heavily sedated and medicated until his breathing tubes are out. He opened his eyes for a few minutes, but they were quick to put him back to sleep so he wouldn't become upset over the breathing tubes. His heart rate has been high, his blood pressure very low, and he's had a weak pulse. His blood sugar has been all over the place and he hasn't needed any additional transfusions but they are watching that closely. They have a nurse bedside 24/7 while he has the breathing tubes in.
His head is very lumpy and rough looking, and it will take about three months for most of that to smooth out. He has not swollen much yet. In three days, his eyes will swell shut and his head will be like a pumpkin. From then, the swelling should go down and we will be able to go home once he can open his eyes again. I will be sure to update everyone as things progress.