Big Questions

Well, first let me say Sophie is doing wonderful. Everyday her personality shines more and more. I could sit and stare at her for hours. Which on most days is exactly what I do lol! Our days in the ICU actually go by fast. We get up, do care, trach changes, baths (which is more of a task than it seems), we rock, we play, we do therapies, we do care, we eat, we take pictures, we read stories, we suction, suction, and more suction, we cuddle and repeat. Then before you know it very late in the evening and then we rock and then we sleep (hopefully through the night so mommy can sleep too lol).

Second, I have to say...John and I still have some pretty big questions. Why is Sophia still needing vent support? For the first 6 weeks of her life she did not need any support even with a blocked nasal passage way. She learned to breathe through her mouth. Then they discovered her airway was collapsing on her. Which it did not do that previously either or was not strong enough at that point to be an issue. The trach was suppose to fix the airway and we were told she would come home on a trach collar because her lungs were good. A month later we are still on the vent and now our red flags are flying. After the trach, the first week was recovery and then it was us getting adjusted to the changes and then we moved to the IICU. Now that everything is settling, we have had time to think and now we have more questions. I spent the weekend asking every nurse or doctor I saw, WHY. The only answers I have received is there is no exact answer as to why and only time will tell. Well I don't by it... I need more than the answer time. Especially, if the anatomy is there then show me what is wrong. I think we are going to call another Care Conference. The doctors following Sophia now have never seen her before and I have seen a new doctor every time I have asked to speak to the doctor. I need consistency, she need consistency and someone who knows her very well. I am going to speak to someone tomorrow to make this happen. I will keep you updated....