Wednesday, January 8, 2014

Craniosynostosis, Part III: The Surgery

Joshua hadn't slept longer than three hours -- and usually less -- since we'd brought him home from a complicated delivery four months earlier. But there he was, nurses coming and going, triage lights glaring, mom and dad whispering, going on four hours without food, and passed out asleep.

Sleeping through check-in and vitals


I still count that as one of the greatest miracles of his surgery (besides the fact that some doctor discovered this surgery is even possible).

At about 6:45 am, all of the pediatric surgery patients were moved into one large room for a final check of vitals, each patient in a little curtained cubby with a bed and a chair and a nurse. I paced and bounced Josh around, and said it was to distract him from hunger. But the truth was, it kept me pulled together in those last few minutes before surgery.

 
Other parents talked reassuringly to their older kids, and all of our eyes glanced curiously around the room. We tried to guard the private moments of other families with quiet whispers and diverted eyes, but there was also comfort in this shared surreality, about to entrust our babies to the talents and wisdom of people we'd only met a few times, even if they were among the best surgeons in the world.
 
 
Wally gave Josh a blessing, and then a cheerful nurse distracted us from the moment with a welcome nonchalance. He won Josh's smiles in a few expert tummy rubs and silly faces, then told us to get some breakfast, while he carried a perfectly content Joshua back for surgery. 
 
We wandered through the waiting room crowded with people curled up on chairs with travel pillows and small blankets, but everyone wide-awake. We ended up in the cafeteria, mindlessly following regular customers through the breakfast line, then sitting at a table close enough to a TV monitor with patient updates. It was hard to believe that just two months earlier, we had no idea anything was wrong.
 
One of many monitors around the hospital to track patients through surgery. Each patient's name was encoded, so only those with the patient could follow their progress.

 
For some reason, Medical City Hospital used a scalpel icon on the TV monitors located throughout the hospital, to indicate a patient was starting surgery. We joked to keep our minds off the moment, suggesting any other icon would be more comforting to the loved one watching a patient's status on the monitors. It took a long time for Joshua's icon to change from scalpel to bandaid, and we jumped up to meet him at the pediatric ICU.
 
 
They transferred Josh directly to the pediatric ward, the last room at the end of the hall. We walked in to find him covered in blankets and still unresponsive, but stable. He really improved after a blood transfusion. I wish I'd had the confidence to insist on letting him breastfeed, even if only a couple of drops. He was fussy and uncomfortable, and I think the familiarity of breastfeeding would have helped him settle.
 
A hospital chaplain showed up, uninvited but welcome, and we found comfort in the prayers he offered for Joshua's recovery.
 
In the next room over, I heard a girl wheeled in from a bad car accident. She kept asking for her mom, and my eyes filled with tears as I sat next to Joshua, unsure of why this little girl couldn't be with her mother, and fearing the worst. Even at four months old, I knew my presence with Joshua made such a difference to him. And I wanted to run next door to be a motherly presence for the little girl too. The nurses spoke all kinds of reassuring, comforting words, and we were transferred out of the ICU before I overheard anything else.
 
After a few hours, the nurses said I could finally hold Josh. It was quite the ordeal keeping him connected to all of his wires and IV's while transferring him to my arms. I couldn't believe how different he looked, with the cranial sutures opened again. There was a huge rectangular soft spot from just behind his hairline to the crown of his head. At this point, I could feed him again. He drank a few drops and immediately relaxed and fell asleep.
 
 
After 12 hours, Joshua's head began to swell. The surgeons assured us this was normal, but it made me nervous to see his little swollen face. My brother came to visit us at the hospital, and Joshua settled down in his arms for a nap. The pre-op nurses had warned me that even at 4 months old, Joshua might hold a grudge against his mom for a few days, since I was the last person to hold him before the most traumatic event of his life.
 
Mike holding Joshua in the pediatric ward

After only 36 hours at the hospital, the craniofacial surgeon gave us the choice to stay overnight or take Joshua home. We felt we would all rest more comfortably at home, without the 2-hour vital checks and ambient hospital noise. Joshua settled down in his crib, propped up by his teddy bear and blankets to alleviate the swelling in his head. With the surgery behind us, we finally turned the corner to focus on recovery and helmet therapy.

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