Elizabeth has been doing really well the past few days. Due to her higher CO2 levels they cut back to only doing trach collar trials for 2 hours a day, then she does pressure support for 10 hours and goes back on full ventilator support at night. We also discussed working towards getting her on pressure support at night as well. Which means she will be doing ALL the work of breathing and the ventilator will only be providing pressure into her lungs and giving her oxygen. *This is the same mode she was on at home back in October, but with higher pressure settings then. She is tolerating all of this very well, and her numbers look great. She has been on the home ventilator since my last post, and is doing awesome on it. Its hard to say what percentage of oxygen she is getting now since it doesn't have a setting to tell us. But she is down to 1 liter (and could really go less). For anyone who remembers when she went home in October on the home vent she was 2.5 to 3 liters of oxygen. So that is a pretty big deal! And she is improving and getting stronger everyday. We are still hopeful that we can get rid of the oxygen, ventilator and trach, of course, in Elizabeth Time! :)
She has been off of the pentabard since Wed. And they have decreased her methadone and ativan alot. The Drs are hoping that with her being more awake, it will help her take deeper breaths and strengthen her muscles more. That will help ensure she is expelling the CO2 and we can continue to move forward with more time on the trach collar and work harder to get rid of the ventilator. She has been more awake, and we see the 'old" Elizabeth coming back. We catch her smiling and chewing on everything! She is doing lots of work with physical therapy. And we have started giving her taste trials with baby food during OT. Her feedings have went really well. She is up to her goal feedings via Gtube 3 times during the day, and on a continuous feeding through her Jtube at night.
We met with a home nursing company on Tuesday. So when she is ready to be discharged from here to the apartment, we already have our nursing care and home health equipment supplier lined up. We plan to only use nursing care at night while here in Houston. And if we end up going back home to TN with the ventilator we will again have 24 hour nursing care at home so that we both can go back to work. I am really hoping and praying we can get rid of the ventilator before we leave Houston. There are a few classes Matt and I have to take before she gets discharged. Since we already do all the trach care/changes we dont have to do that again. We will be retaking a CPR class, but thats always good to have. And unfortunately we have to take a class on giving injections for her blood thinner medication. She will be on it as long as she has the broviac. And we will have to take a class on caring for the broviac.
This past week has been pretty great. Elizabeth has made lots of progress and we are so excited to see our little girl acting more like herself. We have felt comforatble enough to leave her to go out to dinner more often. And were lucky this week we went to dinner with 2 of our favorite PICU nurses on Monday night. And on Thursday night we were able to attend an awards dinner hosted by LifeGift. LifeGift is the organ procurement organization for Texas. They assisted in locating and retriving Elizabeth's lungs, and they also maintain the Texas Donor Registry. We are so lucky to have been a part of this event. It was amazing to see so many organ recieipents, and families of organ donors in one room. I can not even explain how it felt to be surrounded by people "who get it". People who have been where we are waiting for their/or their loved ones gift of life. Or being on the opposite and having to make that choice during their time of loss, to give the gift of life. Matt and I sat with a woman whom I have been in contact with only on facebook that I "met" through LifeGift, Shannon Lenox. Shannon's 21 year old son died last year in a car accident, and she donated his organs. Sitting at the table with us and Shannon, was the man who received her son's heart. How AMAZING is that!! The event at LifeGift was filled with stories like this, and it just touched my heart to be a part of it. I want to remind all of you again, to please consider being an organ donor if you are not already!! You NEVER know when your life will be touched by it!
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