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| Kristen our sweet nurse:) |
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| what saved her life:) |
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| "Our little family" |
Wow what a long week this has been. I don't even know where to start but here it goes. Sunday evening Maddie went to bed complaining of a sore throat, so being the paranoid mother I am, I kept checking her for a fever and when I went to bed she didn't have one. When I got up the next morning I jumped in the shower and started getting ready for work. I looked into her room and noticed she was sleeping pretty sound but something told me to go check her and my worst fears were realized, she was burning up. Her fever was 103.5 and she was really congested. Needless to say we panic with a fever because it doesn't take a cancer kid long to go septic once a fever starts. We have to call oncology as soon as she gets to 100.4 so with that we were way past that. I was still dripping wet from a shower and took 5 minutes to dry my hair, get dressed and then I put her in the car and headed down. By the time we got there the clinic was open, thank heavens, because we are not a fan of the emergency room. Once in clinc they took her vitals and the nurse mentioned how low her blood pressure was and I said well it's usually low but not that low. It took them about an hour to realize that her blood pressure was not coming up anytime soon and kept trying to push fluids in hopes of it going up. She was admitted and they continued to try and get her blood pressure up but every time they gave her the heavy doses of antibiotic it dropped lower, then they tried a new antibiotic called Vancomycin, and it all went down hill from there, she had a horrible reaction to that antibiotic and had what they call red man's syndrome, her whole body went bright red, her eyes were almost swollen shut and she said she just burned all over. It was horrible to watch, at that point they decided to send her to the PICU (Pediatric Intensive Care Unit) a place I don't care to be anytime soon. We were welcomed by about 5 docs and 4 nurses and they started hooking her up to anything and everything, she had so many lines going to her I don't know how they kept track of it all. All the while myself and Kevin just sat there in shock and just felt helpless. I can't remember a time when I ever felt so afraid. It took about 2 hours for her to stabilize and settle down, she was so scared and who wouldn't be, but never once did she complain. We stayed in the ICU for 2 days until they could give the antibiotics without the blood pressure dropping. I'm just so grateful that there are people that spend so much time learning all this, so they can help our kids. I'm at awe at how much they know and have to learn. We had two awesome nurses, Mandy and Kristen who we can't thank enough for taking such good care of Maddie. We found out today that when she was down there she was in Septic shock and that it could have been really bad. I'm glad they decided to not tell me that when we were down there.. She's doing much better now but her counts dropped this morning and it's too dangerous to send her home, so we are here until they come back up. That's ok, I am relieved about that.
We are now back to ICS and very grateful she pulled out of it. We have no idea what bug invaded her body the only thing she tested positive for was the Rhino Virus (common cold) but they are confident is what a bug that they didn't have a test for and a bad one.
I found out there was another cancer kid down there that also had gone in with a fever and I actually walked by his room several times. I see his dad on the 4th floor all the time. I can't remember his name but I know he was 13. Unfortunately he passed away yesterday morning and that just makes me sad. I sat in the waiting room with his parents the night before for the hour that they kick you out for reports and I just feel so bad that I didn't even ask how he was doing. I looked at his dad several times and he justed smiled at me cause I knew he knew me from the ICS floor. I wish I could find out who they are so I could at least send a condolense.
One thing I have learned this week is this: I look at Maddie a little different now, hug her a little tighter and thank my Heavenly Father daily that he heard our prayers. I know that there were a lot of people praying and concerned for her and for that we are grateful. One thing about Cancer is you just never know what to expect from day to day. I could go on and on about the many tender mercies that we continue to receive and wonder why things have to be the way they are. Why do these kids have to suffer and die? Questions that only one person knows. I know the plan and I accept it but I don't always know why. I hope that the family that lost their child this week will have peace in the days to come. I've met many a good family through this whole ordeal and know that they will be in my heart forever. Thanks again to all those who support and love us through this we couldn't do it without you. All I can say now is go give your kids a big hug and tell them you love them, you just never know what the next day will bring. I love you Maddie, Lindsay, Abbie, Tom, Rory and Olivia you all complete me!!! and of course Kevin:) love to all.
Sue
