What is Kids-With-Cancer
This community's purpose is to provide a place for parents and kids with cancer to support each other. Cancer is a class of diseases or disorders characterized by uncontrolled divi...
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Tuesday November 24, 2009
Breaking News Stories
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As most of you know, Kylie Marie was born 11-26 at 11-24 in the morning. She weighed in at 6 pounds 5 ounces, and immediately began crying, always a good sign. Her color is surprisingly good for an HLHS baby. She has some WILD black hair! Right now she is on a vent because of the medications that she is on to keep her heart ready for the 1st step surgery on Monday. This is really a good sign, tha...
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Well, after all that, we didn't pass the ECMO trial. They have been back into her chest cavity and cleaned out more blood. They have discontinued the blood thinners for now unless she absolutely needs them. They continue to give her blood and she continues to fight. We continue to pray, will you keep praying also?1 Recommendation11 Comments
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While she was down Friday night, Kylie and God must have had a long talk. I can see it. Kylie said "No, I have too many people counting on me and believing in me. You have to put me back in the game coach." She sounded just like her parents which will keep going in spite of everything. And she came back stronger than ever. We are now a couple hours into an ECMO trial, and doing incredib...2 Recommendations8 Comments
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Well, the ECMO trial is done for today and she did great until the last half hour. Then she had some problems with her heart rate and they had to put her back on. I am very hopeful that her heartrate problems were due to low potassium which is easy to fix. The other choice is that the ECMO catheter is irritating the lining of her heart, which puts us into another circle situation where the ECMO i...1 Recommendation9 Comments
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They discontinued all three of Kylie's chest tubes over the weekend, figuring that at least one would have to be reinserted. 2 were plugged, one was displaced and potentially hazardous. Well... 48 hours later and my granddaughter is still tubeless, no symptoms of fluid in her pleural cavity and this is a nice big step forward! We have CPAP, we have a feeding tube, and we have a PICC line with...1 Recommendation7 Comments
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Updated my avie again, so many pictures of Kylie and she is SOOOO beautiful!!!. As you will notice, we no longer have a CPAP mask. She also has no IV medications. She is doing very well.
What we need is some weight gain and a relief of withdrawal symptoms. She has been getting her MS IV which is well absorbed and utilized by her body. MS is not absorbed well in the GI tract, so they switched her t...1 Recommendation7 Comments -
Well, yesterday no post because we got close to a foot of snow, over 36 hours. So I stayed in and hibernated. Today, made the U of M trip and I got to hold Kylie!!! So did Paul. Miss Kylie has herself a new chest tube :( and got herself a new IV drip med :(, but is off of the high flow Oxygen. The general consensus is that she could go out to the floor but given her history it's better to kee...1 Recommendation9 Comments
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OK, here's the news from the Kylie front. First off, Kylie is off of ALL respiratory support. No Vent, no high flow O2, not even a nasal cannula. Room air only for our baby girl, and she is holding her sats and doing well.
2nd, she has taken her position as the queen of Ron and Aubrey's lives. I guess she is starting to drive Ron a little nuts with her hissy fits. This is a good thing, it ...1 Recommendation7 Comments -
Thank God Aubrey called the doctor and they were met by an ambulance on the way to Ann Arbor. Kylie had another seizure in the squad, they hit the lights and sirens and flew up 23. Ron couldn't keep up. Kylie was admitted to the 5th floor at Motts, the same place she was yesterday.
I know that this is probably a glitch, a bump in the road. We've had lots of them, and God has never failed u...1 Recommendation10 Comments -
Had a talk with God yesterday morning on my way home from work...He either has to slow down the pace a little bit, help me get more sleep or decrease my sleep needs to 2 hours. It has been a very crazy period...
Kylie is back up at Ann Arbor. It could be just a viral infection, it could be sepsis, we are losing the shunt, the next operation is scheduled for April 27, it could be later (if we have ...1 Recommendation6 Comments
