Friday, November 6, 2009

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!

Thursday, November 5, 2009

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.

Wednesday, November 4, 2009

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.

Tuesday, November 3, 2009

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

Monday, November 2, 2009

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.

Sunday, November 1, 2009

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!