Arrived at hospital at 10 am, checked in, waited. Went back to the OR holding area at 10:45 and had a private room where we waited for nurses to come and take information.
This was a hard time – all of the waiting. Plus, we couldn’t feed Elden and he was hungry and mad about it. The last time I could nurse him was at 8:30 am, and then he had some Pedialyte around 10:30 am. I wore him in the BabyBjorn and he eventually fell asleep. Thank God!
The surgeons came around 1:15 and talked to us about he procedure. It was Dr. Jimenez and his wife/surgical partner Dr. Barone. This was the first time we met her – and she was very nice. Her and Dr. Jimenez seem to make a great team. They assured us that they would take good care of Elden, still it was hard to think about what was about to happen to him.
I found this link on their website that has a PPT presentation that shows actual photos of the surgery (not Elden’s surgery, just previous cases). These pictures helped me just because I wanted to know exactly what they would be doing. Just a warning: they are graphic and may be disturbing to some. Here is the link, at the bottom of the page, there is a link that says “Endoscopic Treatment of Craniosynostosis” – click on this and it will download or open their PPT file.
Finally the anesthesiologists came around 1:40 to talk us through the procedure and what Elden will go through. Here is our team of anesthesiologists. Then they took him back at 2 pm., he was just a smiley happy baby when they took him. The prep time took 1 hour – they used anesthesia gas to put Elden to sleep, and then started his IV, took lab work, intubated him, and positioned him for the surgery. Pat and I went to the cafeteria and sat outside during this time. The case manager Wai called us at 3 pm to let us know that they had started – and had made the first incision. The surgery took less than an hour and we received a second phone call from Wai at 4 telling us that it was done. She met us in the waiting room and we met in a family conference room with the surgeons Dr. Jimenez and Dr. Barone. They told us that it went beautifully.
Dr. Jimenez told us that Elden really was a special case – his sagittal suture was fused and growing twisted toward the back because of the positional molding. Because it was growing this way, a keel of bone was growing downward toward the brain and was causing pressure. Also, his sagittal sinus (the main blood supply to the brain) was unusually close to the suture – something they could have only seen with this type of surgery – through the endoscope. If we would have gone with the traditional surgery – it could have been bad, it could have been severed because the position was different and they would have been cutting blindly. WOW, so thank you God for leading us here to have this type of procedure done! My heart just sank when the told me that and I am probably still processing it. It is very humbling and just brings tears to my eyes every time I think of it.
Dr. Jimenez and Dr. Barone also gave us a “gift”. In an envelope, they had taped the small pieces of Elden’s hair that they shaved – and it said “Elden’s first haircut”. It was very sweet. They don’t shave the whole head – just small strips where the incision is made.
We were then led up to the ninth floor to the Pediatric Intensive Care Unit (PICU). We had to wait in the waiting area while the nurses set Elden up – but really we got to see him right away.
This was the hardest part for me. Maybe also because I was trying to keep it together through the whole day. Seeing Elden in the bed all hooked up, the cuts in his head and hearing his little raspy cry just broke my heart. There was nothing I could do for him. A nurse was trying to burp him because they get air in their tummies from the breathing tube. He was just so uncomfortable.
His head already looks different – the back looks completely flat to me. But it is swelling and “boggy”. The cuts aren’t too bad looking – no outside sutures, just a surgical super glue to hold the skin shut. The purple stuff on his head is the super glue. The nurses set up all of the monitors with alarms so that if his levels went below certain numbers – beeps or alarms would go off. These freaked me out at first – to hear those alarms go off. After a while, they set it up so that they would only go off at the nurses’ station. He is hooked up to an IV in his hand, and many other monitors with wires- blood pressure cuff on his leg, oxygen level monitor on his toe, heartbeat tabs on his chest, etc. Still, he is the cutest thing ever.
I gave him my shirt to have next to him because it smells like me. And covered him with the special blankets that Aunt Jaina and Jackie made for him. Jackie’s blanket has a prayer in every stitch and I love the thought of that.
All of the nurses and staff are very nice and accommodating to us. There is a little fold out chair for me (Jessica) to sleep on in the room with Elden. Pat and I will trade off sleeping there tonight. Grandma and Papa Tony and Aspen came for a visit. Poor Aspen couldn’t actually come in to see her brother, but Grandma and Papa Tony were able to. Little Aspen just doesn’t understand what is going on, I am sure it is scary for her. This will be our first night away from her. I know she is having a hard time.
Elden slept a lot at first, and then would wake up startled and fussy and then go back to sleep. Elden started to wake up more around 7:30 pm and I tried to breastfeed him. He did eat a little, but it was scary for me to position him, and hold his head. They said I could do it like normal, but he was still just so uncomfortable. He ate a little and then got really upset. They gave him more morphine. We’ll try again in a few hours…
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