Yesterday they decided to try sedation with morphine so they could pull back on the some of the other things Zoe has been getting large amounts of. It seemed to work. She had a nice peaceful day and an equally peaceful night.
Dr. Boyle is back today and during rounds they were discussing what happens when Zoe “wakes” up. They don’t want her paralyzed because her muscles will turn to pudding after awhile and she will have a very difficult time after transplant. That’s all fine with me. I don’t want her paralyzed any more than they do, but I do want her comfortable and this afternoon she wasn’t.
Before I get to the part where I got angry and was forced to behave badly, I’m going to update you on some of things happening to her physically. Because she has a tube down her throat, her nasal passages can’t drain and she obviously can’t swallow. So she’s been blowing snot bubbles and drooling far more than she ever has. When she starts to wake up and wants to breath through her nose is when the nasal drainage gets out of control. To help with that problem, we’ve been suctioning out her nose and her mouth. It seems to help. We also noticed that when she starts to stir, she becomes more awake if we rush to her and try to calm and quiet her. She responds to our touch and our voices and tries harder to overcome the sedation. So if we sit quietly and don’t touch her, she figgits a little and that’s it. It’s no where near as bad as it has been.
This afternoon she started to wiggle and I looked over and saw she was drooling pretty bad and had some serious whooper like snot bubbles. I woke Mike up so we could get her cleaned up. It was a big job and required 2 people. She started to get more aggitated and Mike went to grab the nurse out of rounds. It was after 10 and she hadn’t had any sedatives since 5 so it was probably time. Apparently he was told we were wating for the good stuff to come from the pharmacy. So we cleaned and waited and she got more and more aggitated. She had her eyes completely open, was trying to get up and was violently kicking her feet. All the while, 3 Dr’s (Dr. Boyle included) and at least 2 nurses stood outside her door and watched. I finally got fed up and joined them in the hall. I said I was under the understanding that we were waiting on meds from the pharmacy and if they were all too busy to please point me in the direction and I would go get them myself. Dr. Boyle informed me about the muscle turning to pudding thing and he said they wanted to see exactly what happened when she “wakes” up to see if sedating her less was an option. (that’s the short version). I said that was great but right now if she could get her hands free and get up out of the bed she would. She was that awake and that she was thrashing violently and I had concerns of her knocking the breathing tube out of place. He nodded. Apparently that is a distinct possibility. Duh. I informed them that this is what happens when she wakes up and she was in need of some help…..like now! I turned and left them staring blankly and went back into her room to help Mike. He was suctioning (the more upset she got, the more snot bubbles she blew) and trying to calm her to no avail. I asked her if she was upset and scared and her eyes got very wide and she shook her head. She tried to get up again and Mike and I held her back down and that’s when she puckered her little lips around the tube and started to cry. I think both Mike and I saying loudly “Shhh baby! Don’t cry” got their attention because they abandoned rounds and the nurse gave her something to calm her. Finally. I guess they had had enough of the show were ready to change the channel.
Needless to say I’m beyond angry today. There is not excuse for leaving my daughter to cry and be afraid. It won’t be tolerated and I think I made that clear. I hope I made that clear.
November 29, 2008 at 1:51 pm
Oh man, I’d be ticked too! I’m glad they finally gave her something! There is nothing like seeing your baby struggle and not being able to comfort her. Mine’s had a terrible cold/cough and he’s just 21 months. His head gets so stuff he can’t sleep and he’s miserable. I want to fix it, but I can’t. How much worse it must be for Zoe!!
She’s in our thoughts and prayers!
November 29, 2008 at 3:51 pm
Oh, sweeties, I’m so sorry for all of you. Poor little girl. So scared she must be and I know you are also scared. We love you much and I check for great news about 10 times a day. We keep praying!!
November 30, 2008 at 12:17 pm
God be with you. I am so sorry. We are praying for you.
December 1, 2008 at 12:37 pm
i’m glad you’re speaking your mind and making the doctor’s hear you.; alot of times they don’t. Hi Zoe!. Chrissy, i was wondering if you have any flyers for the dinner? A friend of mine wanted to hang one at her work and i can hang one here and then nick can hang one. let me know. talk to you soon. Love ya
December 2, 2008 at 1:27 am
Hi Chrissy. My son attends school @ First Baptist and he is the one who introduced me to Zoe. When we sit down to pray he always thinks of Zoe. Since I have become aware of you and Zoe, your family spends alot of time with me. Thanksgiving, morning coffee, quite time……you get the picture. I can truly empathize with all you are going through. At the age of twenty my son suffered a catostrophic accident and for months we did not know if he would live or die. He was in the hospital for over a year. Praise GOD, he lived! I did not lose my son. The hospital can be a nightmare to say the least. I fought hard for my son and continue to do so after seven years. We are frequent fliers because my son was left very different after the accident and it causes many complications requiring alot of time in the hospital very ill. We never leave his side! He continues to beat the odds on a daily basis. GOD BLESS you all and know we continue to lift you in prayer.