LIMBO Rock

We are a little down and out after Kiera's care conference today. We thought we were planning discharge, and it seems we are in somewhat of a LIMBO state, and doctors are concerned and "puzzled." Kiera was ventilating better two weeks ago and seemed to become worse and a little unpredictable in the last week. The doctors are concerned that there is maybe more to her problems than the initial viruses. Her PCO2 levels have been 80's to over 100 and with no obvious case. We have a few action plans in place and started with a trach change to a larger trach today, but the concern is that there is too much dead space in Kiera's lungs and that maybe she is becoming unventilatable. Her settings have increase to levels that she cannot come home with even on a home ventilator. They even threw around the words "lung transplant" again even though we "aren't there yet." I am hoping for some miracles. They cultured her again today to see if they have missed some bug. They will echo her tomorrow to see if pulmonary hypertension is back and warrants sildenafil. They will CT her to try to get a better picture of her pulmonary tree in a few days. They are wanting to put in a porta-cath again, which would require surgery. etc...etc...etc.... Too many variables to play with and wait and see if they make any difference. On the plus side, Kiera is trying to get her strength back and sitting in a chair for longer periods of time to play. She is clearly bored out of her mind. She is trying to stand, but still can't stand on her own or with a walker yet. We took her on ten laps around the unit in a wagon today, with the big ventilator in tow, as well as an entourage of RT trainees. It was a little comical to have 10 people in step with one kid on a vent. Unfortunately, we didn't have the all clear to go outside, so the wagon ride was the highlight of the day. I am having one of those days where I really wish I could just have the everyday struggles of a soccer mom. Some things are just too much. 8 weeks at this stage in the game with no end in sight is not where I thought I'd be 8 years ago. Tomorrow is another day.