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Thursday, April 7, 2011

Back In Action

 OK, so Peter's not very good at keeping the blog up to date :) He's pretty good at other things though, so we'll keep him around.

I spent the last week driving across the country with my mother and our three year old son, Caleb. I wasn't sure we were going to make it out there alive, but to my surprise, my mother was rather well behaved. Just kidding! My mother was our life saver and Caleb was a perfect child. I was very, very, very lucky.

When I left, Charlotte was still in the hospital. Since we knew that they didn't want to do the surgery to remove the tonsils, and she wasn't technically "sick" I figured I should go ahead and keep going with my plans to drive our car out to LA. (Peter is going to be a pediatrician after all-- he can probably handle it. And I may or may not have made him go to San Diego for a month long rotation on the same day Charlotte was admitted to the PICU in September. It would have been *slightly* hypocritical of me to stick around.)

Peter spent the rest of the week in the hospital with Charlotte; an experience which will certainly help him to be more sympathetic to parents in the hospital when he is a pediatrician. Charlotte kept him there a little longer than we had planned for several reasons.

First, they were able to slip her in to the pulmonary floor to be fitted for CPAP. Luckily after about two nights, she seemed to get used to it and has been doing well with it. Since there isn't an obvious reason for Charlotte's OSA (obstructive sleep apnea) the doctors wanted to check to make sure it wasn't a malformation of Charlotte's brain stem. Or something like that. Apparently there can be a problem with the brain stem which causes OSA. To check for this, they had to get an MRI. Since Charlotte is little and doesn't respond to commands well, she needed to be sedated. Since she has an oxygen requirement, the sedation needed to be general anesthesia. Yupp, back on the ventilator for an MRI.

Luckily Charlotte did really well with the MRI and the anesthesia. While she didn't have the malformation they were looking for, the MRI showed that Charlotte had an infarction in her posterior inferior cerebellar artery. Basically, she had a stroke.

Let me tell you, it was a long wait for the neurology consult. I was driving across the Kansas/Colorado border and the general desolation (sorry for all y'all who live there...) wasn't helping the wait. Finally neuro came to see Peter and Charlotte and explained that since there was cerebral spinal fluid in the space this was an old injury. Apparently, it takes time for the blood to dissolve the brain tissue and for spinal fluid to fill up the space. Since we don't know when this injury occurred, we don't know much about how much it will affect Charlotte. The neurologist assumes it happened very early in life. The thinking is that Charlotte's brain was still extremely plastic-- meaning it was malleable enough that it could re-wire and no lasting damage in terms of function has occurred. As we age, we lose this plasticity, and damage to our brains causes more and more long-lasting impairment. Luckily, Charlotte's not too old just yet :)

If this stroke was to cause impairment, it would affect her mobility, swallowing ability, and her speech. Since these things are typical micro-preemie problems, it will be very difficult to tell what is due to her prematurity and what is due to her stroke. Flip a coin.

The other thing holding them up in the hospital was Charlotte's oxygen requirement. We were hoping that with the assistance of CPAP at night, maybe Charlotte could come off of oxygen during the day. They trialed her for one day off of oxygen and she did really well. However, the pulmonary doctors consulted with Charlotte's pulmonary hypertension doctors who gave this plan the axe.

Apparently, Charlotte's heart is still working a little too hard to keep her body full of oxygen. The oxygen in her case isn't to keep her blood oxygenated, rather, it works to decrease the pressure in her lungs (oxygen is a vaso-dilator) and allowing her heart to pump a little less. Without the vaso-dilating, Charlotte's heart can actually re-build itself in a damaging way. This damage can become permanent and can cause death (this is pulmonary hypertension). Charlotte is many, many, many steps away from this level of severity, but we're keeping her on the oxygen to keep her from getting any closer.

So that's that! Charlotte came home, CPAP and all, on Saturday. She's rocking an awesome faux hawk from the CPAP at night. I'll post a picture later. It's seriously the best example of hat hair ever.

1 comment:

  1. I'm glad she's home. Can't wait to see the faux hawk!