'My Life Monday'

Just thought I'd give a quick update. We are still at Texas Children's but hope to go home this evening or tomorrow morning. Doctors are still unsure what's wrong with Miss Madeline, but after an OT consult today, it seems that they may have a general direction to shoot in... as opposed to the dark where they've been shooting for a few weeks. The OT seems to think she has some swallowing issues and liquid is going down her trach instead of her esophagus. That would account for most of her symptoms. If her swallow function test today comes back negative, then we'll be back at square one. We had a visit this morning from a large group of attending and resident physicians and they all seem to not know the problem, just know that there is one! None of her symptoms fit together. Her white blood count is low as well as her neutrophil levels. One doctor was concerned about blood in her stool and instead it showed a high sugar level, which is a very strange finding with constipation. Normally, that would show in a patient that has diarrhea. Her cough has started up again and this time they haven't been so quick to dismiss it. We actually have another chest x-ray coming up today or tomorrow morning with plans for repeating her sweat chloride test in a few weeks. She did loose some weight since yesterday, but after 3 huge poo's that's to be expected! (And welcomed, yeah for poop!!) In the next few days, she'll be set up with PT and ECI in the hopes that we can get her gross-motor skills caught up to her age. We're excited about the ECI recommendation, I know that it will be very beneficial for her. I guess that's about all we know for now. Thank you so much for all of the prayers! It's so nice to know that our family has been well thought of!

Much Love,
Sarah


No picture for now, but check back later... I'm sure I'll get one uploaded :)