TGIF!
It’s been a bumpy road the past couple of days. Ivey has been more playful during the days. The evenings and nights have been long and painful. Managing Ivey's pain at night is difficult. She is not tolerating her continual night feed. She is not sleeping and the little spurts that she does are very restless. Even after Lortab, morphine and Motrin, last night she was up and agitated until she finally exhausted herself around 3 am. They were in at 4:30 a for labs - rest over. She is also having little episodes that seem like jolts of sharp pain maybe hitting her. Seizures are spiking in every so often.
This afternoon Ivey was moved from PICU over to the Floor. She will be here through Monday for sure. Coming home after Monday will depend on how well she does over the weekend.
She is still very swollen and bruised. Wednesday night the swelling peaked, hopefully swelling will continued to decrease even though it seems to have increased again this afternoon.
Ivey had chest x-rays Thursday morning. Her left lung is fuzzy. We do know that she did aspirate blood on Monday. There is nothing to worry about yet, but we desperately need her to lay on her right side, but she is not cooperating.
Stay warm. I haven’t been outside since Monday, but they say it is cold outside!!
I am attaching pictures of the mold of Ivey’s skull. Maybe seeing the mold will help to illustrate what happened during the surgery and what we will be doing over the next several of weeks.
Ivey’s upper jaw is EXTREMELY small. Her air passage was being a little obstructed and would continue to be as she grows. You will see pink, that is her teeth. But right next to, not quite below, her nasal bone, you will see black lines. The lines are where the surgeon cut her maxilla bone. Basically, in blunt terms, we broke her face. The procedure is called a La Fort Osteotomy. It is an extremely painful procedure. Her maxilla bone would be “free floating” except that it is secured by hardware. There are devices sitting on the cheek bone area that are distractors connected to the pieces securing the jaw. The distractors come through her skin like little antennae. We use a wrench to turn the screws and move her upper jaw forward, giving her space in her nasal/palate area.
During the surgery Dr. Williams moved Ivey's jaw forward 5mm. I am turning the distractors twice a day. Starting tonight we will begin turning each distractor two rotations, where we were only turning once. Despite the swelling, her jaw has moved a small noticeable amount. Yes, there are areas of her skull that are still open from the cranial vault expansion she had a couple of years ago. That is good, there's room for her growing brain!
G.
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