I almost hate to update this.. one minute shes great the next shes not. I feel like I confuse everyone with my posts. She had a really good night last night, an ok morning and then a not so great day, then it got better and then it got back to be crappy again. So in an effort to not make this a novel I will list the good and the bad below.
Progess for the Day:
~ First off she has weaned down on her oxgyen and tolerates it for the most part, she is ranging anywhere from 55-75% depending on her mood. And still requires it at 100% when she is having her "episodes" where her oxygen saturation drops. Her oxygen index (or ECMO number (30) as we refer to it) has ranged from 9 to 22 today, so we are exteremly happy about that.
~They turned off the paralyzing medication drip today and she tolerated it for the most part, she is still heavily sedated and has required a few extra doses of sedation today and did need a dose of the paraylitic tonight to help her chill out. So basically that means, she can move around but is still so drugged she doesnt do it very much, and she is still "asleep" all of the time. The main benefit of not keeping her paraylzed is that long term use of those meds can cause damage to her muscles and weakness.
~Physical Therapy came by today, and they have put a splint on one of her hands to keep her muscles and joints limber. She also is having custom boots made to wear so that the tissue/muscles in her feet dont get too weak and droop.
The downside of today:
~They started her feedings again and got her to full doses and then....Her stomach got extremely full and doesnt seem to be digesting properly, not sure if its related to being so drugged and causing it to slow down or what the problem is.
Also the feeding tube the placed down her nose to get ensure her feedings were going into her intestines instead of her stomach, apparently moved and is is her stomach. So the formula was going in her stomach from the tube down her nose, and coming out of her gtube in her stomach... confusing, gross, and obviously not working properly!!! So for now she is not getting fed, until this issue is resovled.
~ Still needing heavy sedation, shes still on almost adult dosing drips of versed and morphine. With as needed chloryl hydrate, penabarbatyl and doses of versed and morphine. (She is SOO used to these drugs it takes more and more to keep her sedated!)
~Still on 20ppm of nitric oxidie
~ She grew more "bugs" out of her trach cultures, waiting for infectious disease to get the suseptibility of those tomorrow and decide if her antibiotics need to be adjusted AGAIN. She has had 4-5 different types of baterica grow throughout this hospitalization. We think that has been what sent her over the edge. The fact that her lungs/heart are weak and getting "sick" on top of that. Her body just doesnt have the capability to handle it like a healthy person would. So she is still on 4 different antibiotics to treat all of these random things she has.
~She is exteremely swollen, could be from all the narcotics and fluid retention
~She now has a pressure sore on the back of her head. During her major episodes over the past 5 days they were not able to even move her without her oxygen saturation dropping so this spot formed on her head. Wound Care has been seeing her and now that they can turn her, hopefully it will be able to heal
without causing anymore damage to her skin.
~And I forgot to add they put a catheter back in the other day since her bladder was not wanting to empty fully on its own.
So obviously she has made progress which I am grateful for, but I dont think that means its time to celebrate. She is still no where near being "better" and has a long tough road to go. Slow and steady seems to be the best approach for her, and we are constantly having to remind them of that here. I have to admit, the communication has gotten better since we kinda "freaked out" on them a few times.
Again, pulmonology came by and said they had contacted the Dr @ Cincinnati we saw in July with the rare lung disease program and she agrees that the next step once Elizabeth is stable is to be evaluated for possible lung transplant. So they are planning to contact a few different transplant hospitals to see which would be best for Elizabeth's case and see what they think about her and if she would be a candidate for transplant at a later time. Depeding on what they decide if possible we will start her work up (blood work, and other testing) here.
In other good news today, we got a room at Ronald Mcdonald House. I am still staying here in the room with Elizabeth and Matt is still getting a sleep room at the hosptial, but our parents will be able to use the RMD room and we will have access to it if we want to get away from the hosptial. We have also decorated Elizabeth's room for Christmas, so it will be ready for her when she is able to wake up.
So heres to hoping that a new month, will bring lots of improvement for Elizabeth! She has to get better soon to celebrate her 1st Christmas and then her 1st Birthday :)
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