Shortly after her birthday she was baptized. It was a private ceremony that was very touching. She says she is happy to be like Jesus and choose the right, and I know she felt the spirit there. She also went to her first girls activity days. she didn't know what it was, even though I told her is was kinda like girl scouts (which she is loving by the way), but after we got there she had a blast. she especially liked making me wear red gloves and the "newlywed" game for moms and daughters. Cloey had a big IEP meeting at school. it went really well and her teachers at kyrene worked really hard to make sure everything was in it that needed to be for the new school next year. It is amazing to see how well Cloey is doing in school! She is even beginning to "read" (sight words, memorizing, pointing to the words, etc). She met or exceeded most of her goals. It was still a lot to go over for such a little girl. something like 10 people were involved over the course of two 2 hour meetings. Nothing but the best for our little girl!
Now to the not so fun stuff.About three weeks ago Cloey had a 102.5 fever. I kept her home from school and when she got out of bed she had a couple quarter sized spots of blood on the pillow under her ear. This has happened before and usually means a bad ear infection and blocked or loose tubes. she has had nine sets placed and we are pushing a year on these ones. I lost my supply of ear drops when we moved, so I had to take her to the pediatrician. She started her on the drops and bactrum (a strong antibiotic affective against MRSA) because of the high fever and her history of being positive for MRSA in her ear. she also took a culture from her ear (which later came back negative for MRSA). So I took her home expecting her to get better. the next morning the nurse reported suctioning some blood-tinged secretions from her trach(brown snot). I kept her home but thought it was probably just draining from her ear. She had thrown up some, we assumed from the fever, so we had been only giving her a little water and pedialyte. I wanted to try a couple ounces of formula, so I went to suction her first. I filled a catheter with bright red blood. very scary. we are trained to go immediately to the hospital because you can't know where it's coming from and she might aspirate it into her lungs. Ty was in phx at Lainey's eye doctor appointment so I couldn't wait for him to get all the way back here and I am not supposed to drive her like that alone so I called 911. They came out and we took the ambulance to Banner Children's (Gilbert Mercy is not quite equipped for the likes of her). We were there all day and they did not do one thing. Except maybe make her worse by not allowing her to eat or drink anything while we were there. They told us they had called her ENT and he said it was probably tracheitis and to take her home. (her ENT told me later that they reported she "looked like a million bucks", when really she was pale and lethargic) no x-rays, scopes, nothing. she filled three catheders and an HME (the thing she wears on her trach that is bigger and not purple) with blood while we were there. I left because I was not satisfied and figured she would be better off at PCH. we went home and she continued to bleed. After her nurse came in with the third catheter of blood I called her ENT's office. The on call guy was mad that they didn't do anything and told me to take her to PCH. I asked him, if we came in right then (midnight) if he would come to the hospital and do anything. He said no, unless she was aspirating. so I decided to keep her home with the nurse that was familiar with her and bring her in the morning.
At PCH they drew bloods, did a chest x-ray and a trach culture. her platelets were a little low, and the x-ray was clear. they said they called her ENT who told them to just send her home. (I later found out they called the wrong doctor). so we were sent home. She was so pale and still bleeding, I knew something wasn't right. I called her pediatrician, who immediately called PCH and had her directly admitted. When we got there the ER doctor knew us. She said Cloey didn't look right and she knew I was very active in her care and would not just bring her in for nothing, so she said she would find out what happened earlier. They started an IV right away (no easy task, she has so much scare tissue it took 6 people to hold her down and four pokes). It had now been about three days with virtually no food or water for her. She perked up a lot after the first bag. We were there about four days. After 2 she stopped bleeding. her platelets were still low, but other than that they never figured anything out. They said it may have been a virus combined with the high doses of antibiotics she has received that caused her platelets to drop which made her bleed easily. at any rate she was better and we are following up with doctors outside of the hospital.
One kind of cool story- my grandma had bought tickets for CATS at Gammage for Cloey and I before she got sick. We were all bummed that it didn't look like she would be able to go. On Saturday morning the day of the show, the docs came in and were basically saying there was nothing more they could do. So I told my nurse Cloey had the tickets and if we were going to get discharged anyway I would appreciate anything she could do to speed it along. She was AWESOME. We were out of there by 11:00am and we got to go. Make sure you ask Cloey about it. It was so amazing, She lOVED it. I will cherish those memories for a lifetime!
Her pulmonologist had been trying to get her into the hospital for a sort of sleep study to change her vent setting because she had become more dependant on it and her heart rate was dropping at night. after the stay at PCH where she her heart rate was dropping a lot, he called us 2 days after we got out to be admitted for 2 more at Banner Children's. He made some changes but it looks like we will be doing more testing for that too. we are trying to avoid a Mayo trip, but something is bubbling with her, I can feel it. I hope and pray the Doctors here will find what it is she needs.
After we were home we saw her urologist just for her annual check up. he said he would only keep her on the antibiotics for another year and if she is not potty trained by next year, we will have to take further steps. I am not sure what all that entails but I am sure it's not fun. So root for Cloey! I hope she can do it.
To tie things all up, Cloey broke out in a blotchy rash this week. so back to the doctor we go. Turns out it is a rash that lasts 6-10 weeks and usually comes a week after a virus. The rash itself is not contagious. So it looks like Cloey did have a virus and it just really knocked her down. at least that is some kind of answer!
hopefully the next post will be short and boring.
exahaustedly yours-
Megan
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