Day Three

Long Day.
Orthopedic Surgeon says her bradycardia and respiratory issues are not due to her spine.
Surgery went well, no problems, recovered from anesthesia well.
Doing sleep study in PICU tonight.
Exhausted, going to bed.

Day Two

We are number five on the wait list at Ronald McDonald House, so it should be tomorrow or the next day. We started of with a consult with the sleep disorder doctor. He agreed that there is a possibility Cloey has this underlying condition. He set up a sleep study for Thursday night in the intensive care unit (because of her Vent) He will be checking her oxygen and Co2 level through the night in addition to monitoring her sleep while both on and off the vent. At the same time she will be wearing a heart monitor to see if we see any correlation to REM sleep and the bradycardia. Next was the cardiologist, he ordered the monitor she will wear during the sleep study. He was glad that she doesn't seem to have pauses just a low rate. He will review the results with us on Friday. He agrees that She needs to be tested for this disorder. It is a genetic blood test that will be drawn tomorrow. The results take about 10 days so we will know more after we come home. It really won't change her care either way, it is just an answer as to why and will give us guidance for the future. Next was ENT (they manage the trach). They also feel the results of the sleep study, heart monitor and blood test are important before moving on. She will have surgery tomorrow to examine, clean and up-size her trach and replace her ear tubes. They will also draw the blood for the test while she is knocked out. She will spend the night in the intensive care unit. Last we saw a surgical nurse to check her g-tube placement which is perfectly fine. So, it looks like we won't have any real answers until at least Friday. Cloey had a real hard time coming out of anesthesia with her last surgery in July, so we are a little nervous about tomorrow. Needless to say, keep your prayers coming! We love you all and are so grateful for all the help and support we are receiving

First Day

Well we have hit the first snag, Ronald McDonald House is full. We are on the waitlist and are staying at a hotel. Hopefully we will get in soon. Cloey had a TON of x-rays done this morning, I think they got every bone in her body. Then we had a Diet consult who may add some gummy vitamins to her diet, she's excited about that because Cal & Lainey get them every day and Cloey thinks she is getting jipped. If she is not able to eat them , we will have to add a powdered supplement to her feedings. This is mainly because at 9 she enters the PRE-TEEN category for nutrition (What!? no way I'm that old!). Then we saw Pulmonary, he believes her lungs are fine, but was researching and putting the pieces together while we were talking and believes she may have another underlying disorder, he will consult with some of her other doctors and get back to us. Last we saw Hematology. She does not believe Cloey has Von Willebrand (the bleeding disorder) and will be getting her labs from Phoenix Children's to make a diagnosis. I am starting to worry about being done by the end of the week. Just today we added two follow-up appointments, and probably a GI appointment and scope. But that is why we come here, to get answers. It's all worth it when we bring home a happier, healthier Cloey.

Off We Go

I know I have a lot to catch up on with our little Cloey, but I will have to do that later. We are headed off to Mayo Clinic in the morning. Cloey's Bradacardia has worsened and the doctors here have no options for us. She will be seeing her whole team and we are expecting changes. Ty and I are going together in anticipation of having to make some tough decisions. We are hoping to find a solution that will maintain her quality of life. I will not be able to post pictures from Ronald McDonald House, but I will try to post a little everyday. Thanks to all who helped us make this trip happen, and who are praying for us, We need every bit!

Cloey's summer so far

The Medical Stuff- After Cloey's bleeding episodes we saw a hematologist who after doing some blood work explained to us that Cloey is borderline Von Willebrand. which basically means that she doesn't clot very well and so will bleed and bruise easily. That's makes a lot of sense since she does bruise easily, and has had to have a few blood transfusions during surgeries. Because she has all of the plastic devices in her (ear tubes, trach, g-tube, de-flux) irritation turns to bleeding real quick. It mostly means we need to be aware of it and have extras blood in surgery. She had some much needed dental work done in the hospital and had a real hard time waking up in recovery, she had an irregular heartbeat and they had to hook her up to an EKG and call the on call cardiologist. After about three hours she was stable enough to come home, but it looks like she is no longer able to come out of surgery on her own and will need to be on the vent in the future. She had a case of pneumonia that thankfully she did not feel horribly sick, did not go away for six weeks. She had to have more oxygen and three round of tough antibiotics before finally kicking it. It was a lot of back forth to hospitals and doctors and getting up in the night, a lot of times her nurse, an on call doctor, and I had to work to keep her stats up. She has been having a real low heartbeat at night, so her vent setting have been raised to almost full support and she wore a heart monitor for two days (we will have the results in a couple of weeks).

The Other Stuff- We went to a ward pool party and I expected cloey to be pleasantly distracted talking to people, to care that she could not go in the pool. That was not the case. First she wanted to put her feet in and then sit in (Cloey WILL drown if her trach goes under water, so there is no swimming for her). Then she did something she has never done before, she said "I want to swim like the other kids" I tried to just talk to her and say, well the other kids don't have trachs and you do so you can't go in or you will have to go to the hospital, I'm sorry. or something similar over and over again. She just kept saying no and pulling away from me and then said "I don't want a trach anymore!" I wanted to cry. needless to say we won't be taking her to any pool parties anymore, it was rough. The positive though, is that shows how far she is coming cognitively. She has also started activity days at church (kinda like girl scouts) and special olympics. She will be competing in Bocce Ball this fall.

Saving The Best For Last- A super sweet cousin of ours apparently nominated us for a free photo shoot for a family with a critically ill family member, and Cloey was chosen! J'lynn Mak Photography generously donated a lifestyle photo shoot to us. we went to Anthem park and had a lot of fun, stay posted for the results, we can't wait! Thank to Melinda, Joanna and whoever else made this possible!

A lot can happen in a little over a month....

Ok~ I am going to try and go in chronological order. Cloey Is 8 years old! She had a great birthday- cupcakes, balloons, Sonic tater tots (her fave), and a present on the actual day. A big family party for all the kids, and a private pony party for just her very closest friends. It was a lot of fun.










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