Another frustrating day..... Lately our days start around 430/500 with the daily chest xrays where they come to the room with the machine and wake Elizabeth and me up to get the xray. Then she goes back to sleep for a few hours. And I wake up to her ventilator alarming because she has pulled it off, again and her nurse is no where around (3 days in a row!). And again her oxygen saturations were not very good she was ranging from 84-92, this went on with her alarming for about 20 mins until I got too upset to take it and had to yell into the hallway for someone to help me. Our nurses came in and suctioned Elizabeth and keep adjusting her oxygen and finally we were able to get her semi-chilled out, but her saturations were still fluctating. Then I felt her head and she was extremely hot. Yet again, she had a fever -101 this time, and her heart rate was in the 180s to 190s. And made it up to the 200s again but thankfully they did not wait 4 hours to do something this time, they immediately got cultures (blood, urine, and trach). Gave tylenol, and started antibiotics to fight any possible infections. The preliminary results again are MRSA, so we will wait for the 48 hour time frame for the cultures to finish growing, and see how bad it is, or if any other infections show up. They also told us her chest xray looked a little worse today as well. So they are starting hyptertonic HIT therapy, where they use the AMPU bag to give her 20 breaths after putting a saline treatment into her lungs to help loosen any secrtions and open up any collaped aveloi. We AGAIN voiced the frustations we have been discussing for the past 3 days with the nurses and the pulmonary team when they came by. Pulmonary felt that increasing her pressure (peep) on the vent would benefit her and changed it (her saturation went up), well PICU Drs didnt like that and decreased it back down (her saturations dropped again), and when Pulmonary came back to check on us he went and "discussed" the change and lets just say her pressure got turned back up :) So after us complaining and voicing our concerns for the past 3 days NUMEROUS times to anyone who would listen. The next change will be that they will put a new trach in tomorrow that has a large opening, which will make her airway a little bigger in hopes that she will be able to get the oxgyen from the vent into her lungs without needing as much pressure and will not have to work so hard to breath. They also FINALLY changed her formula, we have been concerned for over 2 months that Elizabeth is very gassy after her feedings and felt that she needed to be switched. We kept getting different reasons for not changing her, but I think they got tired of hearing us so they changed it today. Hopefully it will help her be a little more comfortable. We were having to vent her feeding tube numerous times a day just to help her not be miserable. We are alos scheduled to have a conference with all Doctors from pulmonology, PICU, ENT and cardiology, as well as our nurse case manager. We are hoping we can get everyone on the same page with a plan in place. The Doctors in PICU and pulmonary rotate weekly, so weekly we have a "new person" who does things different, and it becomes a cycle of no one really knowing that the PLAN needs to be. Matt and I understand that it may take time for the get better, but we also know that she has not improved since we got here. It seems as though she is worse off than when we were at home, and if all they plan to do is keep doing what they are doing now turning her O2 up and down all day, we could have done that at home ourselves!!
OK OK, I know enough complaints for the day! Elizabeth did seem more playful today once her fever broke and her peep was up and she was breathing easier. ~guess that pulmonologist might just know what he's talking about making those changes ;)
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