I think this all goes back to Tuesday -
I received a call from Zoey's doctor Tuesday morning, he told me that Zoey was doing fine but her saturation levels for her oxygen kept dipping down kind of low. So, he decided that she needed to be on just a little bit of oxygen to help her keep her stats up. She was barely on .1 of oxygen which is almost nothing, and she was doing very well. I asked why he thought her stats were dropping, and he said he thought that it was because she was getting bigger and producing more saliva that the suction was not always keeping up with it, and every now and again she would aspirate just enough to cause irritation in her lungs for it to mess with her saturation levels. This made perfect sense to me. There have been several time while holding her that her suction tube did not keep up with her saliva and she kind of coughs up some of it and chokes just a little like you or I would if swallowed something down the wrong pipe. Other then that Zoey was doing just fine....
Stew and I made a trip up there wednesday to see her for her first fourth of july, and she was just so darn precious!
This was Zoey when we left Wednesday.
So the rest of the week Zoey was doing just fine, although, she had slowly kept losing weight over the next few days and her g-button sight had really increased in the amount of leakage that was coming out of it. Myself, Stewart, and nurses pointed this out to everyone, but the only answer we ever got was that "g-buttons leak." (umm excuse me no g-buttons do not leak to the point that my daughter is having seizures!!!! but we will get to that later.) No one was jus too terribly concerned about her weight loss because it was just a couple of ounces and babies fluctuate their weight all of the time. We had planned to move back up to Fort Worth on Saturday because as most of you know Zoey's surgery was scheduled for Tuesday the 10th. I was moving back into the Ronald McDonald home to be closer to Zoey during and after surgery for recovery and everything else that went along with it. But, stewart got a phone call on Friday that his work needed some stuff built by Monday, which meant we had to stay for him to do it Saturday since we obviously would't be here because by then we would be back in Fort Worth.
Well saturday evening came and we called to check on Zoey around 8 o'clock which is the usual time we call and check on her and everything was fine. Then Sunday morning I called about 8 o'clock again just to check on her and tell the nurse that Stewart and I would be headed that way fairly soon. Thats when I was put on hold because the doctor wanted to talk to me. (I could literally feel my heart in the back of my throat) I immediately had an unsettling feeling wondering what was wrong. It was the night doctor who I was talking to that told me not to be alarmed but Zoey was not "acting herself." Acting herself? What do you mean not acting her self?!?! He told me she seemed very tired and it looked as if she had jerky movements almost like she was having a seizure. He also said that he had some labs done and her sodium level was low (at 120 and it should be between 135-140) and that a low sodium level could cause her jerky movements but that he would watch her for a little while to make sure. But he said not to worry and he would call if anything changed...hmmmm don't worry?? Really??? I am 3 1/2 hours away and your telling me my daughter might possibly be having seizures..you're not really sure why..you think you might know..and you don't want me to worry...? Ok.
Obviously I was worried. Stew and I packed our stuff fairly quickly dropped Abbey off with Mary and Jerry and very speedy like were on our way to Fort Worth. After being on the road for about 20 minutes I decided to just call and check on Zoey since I hadn't heard anything yet. By this time her original doctor was there and as I was calling him as he was calling me. He basically said he is just as shocked as I was, and confirmed our fear that Zoey was indeed having not a seizure, but multiple seizures and they were doing everything they could to get them to stop. He also said he got the results for the labs and he just doesn't understand any of it....everything was completely out of whack....and that they were doing everything they could for her but that he didn't know if she was going to be ok...so our 3 and half our drive turned into 1 hour and 50 minutes...You can imagine our surprise when we entered the room and this is what we saw.
At this point I'm really not sure what the doctors were saying was wrong with her all Stewart and I could do was stand there and cry..and we cried, and we cried, and we cried some more...I had no words. I couldn't touch her, I couldn't kiss her, I couldn't hold her...I was helpless. Her g-button got to the point that it was leaking so much, that the stuff leaking out of it was partially digested, and she was loosing so much stomach acids that she needed to break down other acids in the body that her alkaline levels became dangerously high, and her body basically became acidic. Everything was off it was either dangerously low, or dangerously high, and her little body could not stand the chemical imbalance anymore..and she began to have seizures. The last seizure that she had lasted for nearly 40 minutes before they were able to stop it.
I remember asking her doctor..will she make it? Will she be OK? That is all I wanted to know, and he looked at me and said I'm worried, and I can't tell you if she will or not. That was the WORST day of my life...to hear that you might lose your child, its the worst feeling in the world...to see her lifeless body laying there, and a machine breathing for her and watching her temperature go up from 100 to 105 in less then 5 minutes. It was the scariest thing I have ever seen. I've never been more broken hearted in my life. Now it was just a "wait and see" thing. We just had to wait and see what she did how she responded to treatment, if IV's were helping...
But, Thank God for all of the people praying for her...because I really and truley believe that is what pulled her through. In no time, labs and blood gases were starting to turn around. Her body began to "wake up" but that wasn't good enough for me... I could not understand why she would not open her eyes...Here they are telling me she is "awake" and she won't open her eyes..I told the nurses, she isn't awake to me, until I see those beautiful blue eyes. I don't know how many times I needed confirmation that she would open them...one day, she would open them. I believe it was day 3 after being off of sedation and she still had not opened her eyes, when the nuerologist came to talk to us. He told us, "I assume she will open her eyes one day..I can't say if it will be in five minutes, five days, five months, five years. I don't know." That information of course did not settle well with me. None of this had to happen to her...if the doctors would have gotten off of their ASSES (excuse the language) and done something about her g-button Zoey would NEVER have had to go through any of this...they are 100% at fault.
Later that same day I was sitting by zoey's bed side, and Stewart was pulling me away because he said I needed to go eat something...I told him just a moment. I bent down to kiss zoey on the cheeck and I whispered to her, I said; "Zoey, mommy loves you so much, and I can't wait to get you out of this place, but I need you to do something for me, I need you to open your eyes and show me those beautiful blue eyes, so that I know everything is going to be okay." I kissed her one more time and started to walk away. For some reason I felt like I needed to look back at her when we started walking away, and to my shock and surprise, there she was staring right back at me. She had opened her eyes!
So finally, things are better and now we are just waiting to get her back to 100% for surgery..and then maybe we can go home soon!
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