Elizabeth is still doing great on pressure support trails but can only tolerate the trach collar for about 2-3 hours a day before her oxgyen saturation starts to drop. She does 12 hours during the day with a mixture of pressure support/trach collar and then 12 hours at night back on the ventilator with a rate to help work for her so she gets some rest. She still has 2 chest tubes in, they are still draining quite a bit. So they hope once the tubes come out and she is more comfortable. And can take deeper breaths without the pressure of the tubes bothering her, she will be able to tolerate more time on the trach collar.
Her fentanyl drip was decreased down to 1 today. So tomorrow she will be OFF of this drug. Pretty impressive considering she has been on this since November. Her other sedation med, pentabarb is given through her feeding tube. They will start decreasing it and hopefully she will be off of it within a week or so. She will stay on the methadone and ativan through her feeding tube for a while. Since she has been on the stronger narcotics for so long they will help ensure she doesnt have withdrawals and her body adjusts to not having those drugs.
Her feedings were increased again today to 23cc per hour. This is the highest amount she has been able to get too since we arrived her in December. So definatley making progress in that department. Again, the hope is to get her to eating normally, but we know that will take a long time. So we will be using a feeding pump for a while at home. But she has had this since September so its nothing new for us as far as the care and use of it.
She had another bronchospy today to check her new lungs. The Dr said that everything looks good and he is very pleased with how things are going. He told us it will take time for her to come off the vent and be able to get rid of the trach. We are still working on Elizabeth time, and when she is ready she will let us know. I think I am just ready for her to get rid of all of this stuff!! I know her new lungs are ready, its just taking her a little while to get used to having lungs that work so well.
So, with all the progress and the fact that as of tomorrow she will only be on one thing IV, and thats just fluids. We will be moving (if all goes as planed) to PCU, the step down unit on the 7th floor. We are not super excited about it. We dont want to give up our nurses here in PICU. We have become really good friends with quite a few of them, and we are pretty sad to be leaving them. After living here for 5 months, they have become our support system here. They have seen and cared for Elizabeth at her worst and celebrated with us when she got her new lungs. We are so thankful to all of them for all they have done for her, and for us. Words will never be enough to thank them for all they have done for us. But we also know that PCU is a step closer to HOME, and we are ready to for it. Even though we would be fine with staying in PICU till discharge :)
So hopefully tomorrow will continue to be a good day of progess, and if we are lucky she can get rid of the chest tubes.
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