Today was actually a pretty stable day. She only had a few desaturations but was able to recover pretty quickly and always able to wean back down to 65% oxygen. They have been trying to get rid of some of the swelling and she is looking alot more normal. She tried opening her eyes a few times today, now that her eyes aren't so swollen. She continued to have a slight fever throughout the night and a few times today. So we know that her infection hasnt gone away yet. The doctors decided since today was stable it would be the best opportunity to change her trach. Apparently they only change trachs here once a month, that is a big difference from twice a week at Vanderbilt. I guess each hospital has its own criteria. The doctor, nurse, and RT all seemed kinda hesitant about changing it so we offered to do it. The Dr actually seemed relieved that I offered :) They were all impressed with how quick and calm we were when we changed it (Thanks to Diane @ Vanderbilt for teaching us so well!!)
Crazy to think just a few months ago my biggest fear and worry was chaning out a trach and now look where we are, we have definately come along way with Elizabeth and her care. I remember being so scared about her coming on oxygen, and then getting the feeding tube, then trach/vent. And now she needs new lungs!! Guess all of these things were preparing us to be able to provide her with the long term care that a transplant will require.
Another thing I have quickly learned from my hospital living experience is that I look forward to Mondays. Odd I know everyone else is wishing for the weekend, but nothing really happens around here on the weekend, all the tests and decisions are made during the week. She will have alot of blood work done in the morning and she is scheduled for another echo on her heart tomorrow. Please pray and send good thoughts that she remains stable and these tests show she is heading in the right direction for transplant.
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