Day five

We're coming home! Last night Ty and I decided that if we were going to believe that she didn't need the vent anymore we had to be sure, so we kind of did a study of our own. She had the heart monitor on and we did not put her on the vent last night. I was so nervous that after a few minutes of tossing and turning I made Ty bring her to our bed so I could make sure she was still breathing. It helped a little but I didn't sleep much. The cardiologist called me today with the results and said that it was as he had expected. She has an irregular beat, and while her rate dipped into the 40's once, she recovered on her own and had no pauses. This means that she is breathing and her heart is beating within normal range on her own without the vent! So we will be on a flight home on Monday. We are excited and nervous and grateful all at the same time. Thanks to all who prayed and helped Cloey on this leg of her journey, we love you!

Day Four- Miracle day

Cloey had her blood drawn early this morning, she was brave and did it all by herself with no one having to hold her down. We were discharged and went over to the clinic to have her heart monitor put on (it's a 24hr study). When we got back to the hotel, Cloey's ENT doctor called me personally on my cell phone. She asked if I wanted to come back to the clinic and discuss Cloey's sleep study. We headed right over, we were so nervous because it could have meant anything. I was sure it was bad news, why else would she ask us to come over and why would she be calling me and not having the sleep disorder office do it? besides we had prepared ourselves for the worst on this trip and everything up to this point had lead to the answer being that she was just declining. Two of her doctors had even nodded their heads in somber agreement when I asked if that was the case. My heart was pounding and Ty was there telling me to calm down, it could be could good news, but we both looked at each other and knew it wasn't likely. The doctor sat us down and said, "Well Cloey is a puzzle". Her sleep study was in normal range, both on and OFF the vent, meaning she doesn't need the ventilator to breath! You have to understand we (us and the doctors) thought this was impossible. Central apneas (brain not making you breath while you are asleep) are not supposed to clear up.

I have to interrupt myself here and say how the power of so many praying for her had to have played a part in this. We can feel the power of everyone who cares about her. Ty and I are in complete shock. Could this mean we will have a sweetly delayed but healthy 15yr old? can her and Lainey share a room now? will she have a more normal life? will we still need a nurse? Will she continue to get better and not need the g-tube, or even the trach? can we allow ourselves to think of the possibilities? We made into Ronald McDonald House today and it felt so much like coming home, while I sat on the couch waiting to be checked in, saying hello to long time friends, I eaves dropped on a couple being checked in for the first time. They sat there like zombies, completely overwhelmed, and when they were given the quilt that every child receives the first time, the mom held it and cried. Tears started rolling down my cheeks as all the feelings came rushing back. The worry for your child, not knowing which way is up. The pain of watching them suffer. The money problems, the loneliness, the anger, but most of all the fear. I watched them and wondered, after nine years is she gonna get better for once? Only time will tell. but for now I will embrace this miracle

Medical breakdown: This is why we come to mayo- When you look at what has been going on with Cloey over the last six months or so; low heart rate, fatigue, relying more on the vent, it all sums up to her just going down hill. This is what was expected. That is what we thought, that is what her doctors in Phx thought. But here, with all the specialties working together, laying it out on the table, and taking the time to look at and rule out other possibilities they have come up with another diagnosis.

Cloey has an irregular heart rate that is not causing her any problems and can be lived with (we won't know this for sure until tomorrow, but that's what it looks like). They did an electrical study, the monitor, and an ultrasound to determine this.

The monitor at home registers this irregular heart beat as a drop in her heart rate, making it appear as though she has a low heart rate at night. They think this is likely since she seems to be fine in the day and would be having more symptoms if she really dropped as much as it appears, plus they can hear the irregular rhythm and know it could trick the machine.

Cloey's body has become lazy and tired as a result of using the vent at night. This would explain why she is still active, but tires in the afternoon. She is letting the vent breathe for her because she can, even though she doesn't need it. As a result she has a hard time working all day to breathe. Not the other way around like we thought. If she starts breathing on her own, her endurance would build.

The Trach is working and clearing her airway so her brain is now registering at night. This is what was not supposed to be possible, but both the ENT and the sleep doctor admit that not much is known about the brain and central apneas, so something may have just clicked.

They also were looking at another disorder, a nervous system disorder, and have all but ruled it out, confirming this theory even more.

Her spinal fusion is working perfectly, not causing any pressure on her brain stem or any breathing problems.

After talking to a blood clotting specialist and her PHX hematologist, the hematologist here has decided she does not have Von Williebrands, so there is no way that is contributing.

Her airway and trach are clear causing no breathing problems.

Her diet will be slightly adjusted, but again no problems there.

All of this is shocking and was only based on a snapshot study done last night. Whatever clicked in her brain could unclick and we could end up back on the vent in six months. But, we are hopeful and the doctors here are very confidant that as long as her heart study comes back as expected, we have a MUCH happier and healthier Cloey.

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

All in one place

Welcome to Cloey's new blog! I hope to consolidate and provide a place to keep the countless people who love Cloey updated. So from now on, check here first! Right now Cloey's doing great. She (along with the rest of us) are enjoying our new house. She is getting over an infection in her trach & lungs that required 2 rounds of inhaled and oral antibiotics. Although it was stubborn and wouldn't go away, she didn't get very "sick" so that's good. her left eye has gotten "lazier" recently so she now has to wear an eye patch for 4-6 hours a day. she hates it and says "I can't see!" the patch covers her good eye to strengthen her bad eye, so she is right about not being able to see, but that is kinda the point :) She is solidly 12 hours dependant on the vent. we are looking ahead this summer and think we are going to have to leave her home for camping and other fun stuff, which pulls at our heart strings. We are trying to think of fun stuff she can do while we are out. Mostly we are just enjoying her giggly self and this time we have with her while she is feeling good. watch for more updates! I promise I'll be better.......

~Megan