Care Pages Parts 2 & 3
Life is so busy right now and you know I will take bustling around with my two healthy, happy children while walking across fire barefoot any day over where we were 3 years ago...
We were so excited for today. The plan was to take Fiona off the ventilator and see how she was. I really thought I would have a weaker version of the old Fiona back. Ryan and I had breakfast together and discussed the fact that I had such big expectations. I felt there was no other way to be. I realize now I am in a different world here and in this foreign land you can not allow yourself to get too excited. Darn it!
Fiona was taken off the ventilator a bit before 12. She was not her old self at all. She was extremely irritable and her movements were jerky. The reason for this? Well there COULD be one or a combination of many. perhaps she was withdrawing from the meds, or maybe because what is going on in her brain or she could have been agitated because it's a scary feeling to struggle to breathe. Time would tell.
Unfortunately we were not given that time. She lasted 6 hours struggling to breathe on her own. They had to re-intubate her for the fifth time in 11 days. Ryan and I gave our best effrt to show her our strength but we are only human and cried like babies as we smiled and tried to bribe her with a new puppy if she would just breathe properly.
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| cuddle time with Dad for the few hours she was awake. |
Dark days of disappointment and not knowing are upon us again. Perhaps it wouldn't seem so bad if they knew what the original problem was and were treating her for this. Now we have the original issues and than some. Her airway is extremely swollen plus the lung issues don't help. The Ear nose Throat specialist came and she should get an appointment in the O.R. on Monday to take a look at her voice box. It's too swollen and we need to check for any scar tissue. Then there is always the lingering question.... will she be our same little girl when all of this is done and over? It's a waiting game.
The good news is she did last for 6 hours breathing on her own.
--------------------------- Interestingly enough this is where I was on my update last night when suddenly I heard Fiona vomiting. Ryan was immediately at her side. You all think I have so much strength, but it's Ryan. He's my rock. When I saw what she looked like, her lips and skin so white they looked almost blue, I was so scared that instead of going to her side I retreated to a chair and put my head under a blanket. I couldn't stand to look at little Fiona like that but Ryan was there for her when I just couldn't be, I'm so grateful for him.
What happened? At this point we know her blood pressure crashed and she went into some type of shock. We have a family meeting with the teams of doctors today and hopefully more light will be shed on the situation.
Once again we want to thank you all for your support. I have been thinking about how you could help and have come up with something. Being here at the hospital I hear many calls for blood. I think of families and how discouraged they must feel that there are so many of us walking around who are able to give but don't take the time. I'd like to request that you give blood in the name of Fiona Grace. The world will be better and it will make you feel good too.
All our love- The Woodland Clan
PART 3
The good news is nothing much changed today. We had a family meeting with the doctors to clarify what is going on, and as expected...they don't know.Still many of our random questions were answered. They are thinking the respiratory issues are separate from the brain issues. This makes me feel better. So if we can get her breathing on her own in the next week or so we can better evaluate the brain issues. In the mean time we will wait and hope she remains stable.
She was put on a third sedative that does ,seemingly, have a better effect. As much as I love that she fights above the sedatives it is very dangerous because the first thing she does is grab for the breathing tube. This decision was made after she pulled it out an inch today.
I did get a promise from the neurologist that he would take the time to publish a case study in a journal if he does come up with a diagnosis. I realize how much medical journals lack because of time restrictions on doctors. How discouraging.
We are also realizing how important our role is as a part of this team and appreciate that the doctors welcome this role. We are pretty passive people, but these days we're on edge. Today I got one of the radiologist written up for not taking the proper precautions and I feel I did a ton of children and parents a favor, for I'm sure she will not be so careless again. Another example of how we are so important to this team.... Fiona was given eye drops to evaluate if there is any pressure in her brain. Moments later we were moved to a private room (yay, although it means only one of us can sleep in the room with her, boo) Ryan's parents were watching Fiona while we spent some much needed time with Reed. Suddenly Ry's dad came running and told us to get in there. Shit!!! The Dr. is running around telling us that we have to stay outside the room and he'll explain later. Everyone starts running around and barking orders. Ryan hears a gentlemen calling for a CT scan. Ry perks up! He explains to him that she just had dye put in her eyes and can not go for a scan. The Dr. yells "WHAT? " then he stops. With a look of relief as he explains to us that her urine was clear (something they were already testing for), she was unresponsive (3 sedatives) and her pupils were dilated. This indicates that her brain is swelling. Because of the moving of rooms the sign that indicates her eyes had been dilated had not been posted. If she had a CT scan there would have been serious repercussions to her eyesight. We all had a good laugh. Strange huh? Anyway as I write this I beg that no one calls the hospital and goes ballistic. This is Ryan's concern with me writing info. for public knowledge. We are at one of the best hospital's in the world but human's run it. That is why we are part of this team and need to have one of us here at all times.
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| Throughout this whole ordeal we read, sang and spoke to her pretty much constantly. |
Well my friends, please keep us in mind over the weekend. Hugs and kisses. Trudy
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