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Jan 27, 2018 Latest post:
Feb 3, 2018
On January 17, 2018 my daughter, Rylee, developed a fever. As the night went on, it just kept getting higher. So the next morning I made an appointment with her pediatrician. She got her in right away. Thinking it was RSV, they tested for flu and RSV and both came negative. The doctor following protocol because her fever was 102.6 at 7 days old admitted her into the hospital. That day they took blood, urine, and did a spinal tap on her. All tests came back negative. They did a culture on her blood and urine and bacteria wasn't growing. They just kept telling us it was a virus and nothing they could do, just had to wait it out all the while she was getting worse. On the 3rd night there, her oxygen dropped and they had to put her on oxygen. She was at such a low amount, but still I knew something more was going on. But again the Dr kept telling us she would get worse before she got better and again just wait it out. Then on Sunday night, Jan 21, she got way worse. Her oxygen wouldn't stay up even on oxygen, her pulse sock was going off every 5 minutes it seemed like. The next morning, Monday morning, the Dr came in and said he just didn't know what was wrong and she was getting worse so he was transferring her to Arkansas Children's Hospital in Little Rock. Within 2 hours the flight team was there. She was life flighted via airplane. Luckily I got to ride with her. When we got to Children's she had a breathing episode so they put us in PICU for observation for 24 hours, at least that was their plan, in the next 12 hours she decreased so much. She had to have an IV on her neck and put on a ventilator to breathe for her. They ran their own tests and it came back that she did in fact have something called Adenovirus. Which is simply like a common cold in adults but very dangerous for babies let alone newborns. The next two days she just kept going down hill fast. Then 2 specialists called me into a room and told me pretty much she wasn't going to make it. They started her on a Medicine to fight the adenovirus that has never been given to a baby under the age of 6 months and was only given to that one baby. It is an anti-viral medicine. With this medicine though comes a lot of risks. Like kidney failure. Thank God that hasn't happened. She has done so well with this medicine. And they have to give steroids that will lower her immune system because she is on the ecmo. Which we need the immune system to be strong to fight the adenovirus. So it is a balancing act. She is on an ecmo machine to be her lungs for her. It takes the blood out of her, puts oxygen in it, then transfers it back into her. She's also on a ventilator to keep her lungs still working some. She's on kidney dialysis to help filter her blood because her kidneys aren't keeping up with all the fluid they are pumping into her. She's on several medications, on a ventilator, on another respiratory machine, ecmo and kidney dialysis. She is sedated and on a paralytic. She is very, very, very sick. She was getting worse progressively, but has slowed down a bunch and might be headed to the plateau we want her to be at right now. Her lungs and stomach are worse and we need them to get better. There is no alternative. My baby girl is going to get better. I just know she is. She has too. We have a long road ahead. They said she has a marathon ahead of her. We will be here at least 4 weeks. I'm really only asking for prayers. She needs all the prayers she can get. And if you do want to give financially know we will greatly appreciate it and know it will go to helping us pay for this. Thank you so much. Please, again, just pray for my baby girl.