Thursday, July 22, 2010

Day 4-change of plans

Cloey's sleep study was moved to today, so we didn't make it to the zoo : (

The good news is we will probably go tomorrow, and be coming home Monday.

The not so good news is that we have decided to sign a modified DNR for Cloey, allowing respitory and pain control support only.

This trip, our last Mayo trip and her symptoms have concluded that there is irreversible damage to her brain, causing her autonomic nervous system (basically everything you're body does automatically: breathing drive, heart rhythm, pupil dilation, bladder/bowel control, etc.) to not function properly.

When she was born her skull was abnormal causing pressure on the lower part of her brain stem & spinal cord. This was discovered on our first trip to Mayo when she was 2 1/2. we did a decompression surgery (removing bone in her skull & spine) to relieve some pressure. It wasn't enough & subsequently fused her entire cervical spine to prevent damage to her brain or spinal cord. after the first surgery she showed some "signal changes", a black line on her MRI. she lost her pincher grasp in her left hand and had some overall left sided weakness, Hardly noticeable though. The spinal cord can usually grow around damage like that and she would probably recover. Since then her breathing etc. has deteriorated but there has always been another possible explanation. She has a spine x-ray every year and they have been perfect, no new growth or anything. It wasn't until this trip that all the pieces started to fit together and point to her brain & spine.

There is no way to tell if the damage was there when she was born or was caused during the surgeries, and it doesn't matter, she would be paralyzed from the neck down if we had not done it.

There is no "fixing" the brain. we have the choice to try to stay one step ahead of her symptoms (eventual 24hr vent dependence, colostomy bag, pacemaker, repeat spine surgeries, etc. etc) we could probably manage her for another 10 years, but it would be quantity not quality.

Cloey does not want that. she tells me she wants to take her g-tube and trach out. She wants to play with other kids. Today when we showed up to the hospital for a sleep study she wouldn't talk to me. She was kicking me and saying she wanted to go home.

As Ty and I talked about what to do, we remembered that all we have ever wanted was for her to be a kid. all the fighting has been to give her some kind of life. If we wanted her to just stick around and be on machines we could have stoped trying in the NICU. We could have put her in a group home.

What all of this means is that Cloey will still be on the vent, but minimal hours and rate, just enough to keep her comfortable. If she needs CPR they will do breaths only and not chest compressions. We might continue to do minor surgeries like ear tubes, just to keep her out of pain, but we will not be "fixing" anything. We will manage her care primarily at home, with a possible scheduled maintenance trip to Mayo once a year, should Cloey decide to fight the system like usual and stay with us for a few years. basically we will only be doing supportive care and allowing God and Cloey to decide when her work here is done

Are hearts have been heavy all week. we really hoped they would find something fixable. We truly appreciate every one's support & wish we could say "Thanks to you, Cloey will be fine" but instead it's "Thanks to you we were able to confidently make the hardest decision of our lives"

We will get the results from the sleep study in the morning but are not expecting any changes. Ty will be flying out here on Sunday to help me get Cloey home safely on Monday. Then we will start the process of signing the DNR and giving it to all of her nurses, care providers, etc.

While I am extremely sad and get physically sick when I think of losing her, I watch her and realize how much of her life she has spent being "handled" by doctors, nurses, therapists, caregivers, us~

It's time to let Cloey be a kid, even if it's only for a short while.

Wednesday, July 21, 2010

Day 3

We are in Ronald McDonald House! It's so weird, but even though I have never been to this one, it feels a little like I am home. I am sure part of it is the familiarity, but it's just so nice be around people going through similar things. For the first Time in three days, people are talking to me like I am a person, smiling & chatting, not just staring and giving me pity looks. Volunteers and parents with a free hand jumping to help, not to mention a real home cooked ham dinner. Cloey is happy too, she loves it here & of course everybody immediately loves her.

The kids make "all about me" posters to hang on the room doors with pictures and everything. Cloey was glad to see all the pictures of kids with trachs since this is the leading trach & airway hospital. Then She saw a baby with tubes all over and she said "look mom just like I did" yes Cloey, you sure "did".....

Cloey had an EEG placed today. It is wires glued all over her head with a little computer in a back pack. The neurologist wants to rule out seizure activity that could be interrupting her sleep patterns and therefore causing dependency & fatigue. We still have tests to do through the end of the week and into Mon next week. The doctors have an idea of what is going on and are basically trying to eliminate all other possibilities, unfortunately if it's what they are thinking it is, it's not good. please bare with me, it is very complicated and since we don't really know yet, I am not going to go into it now. Just know that our hearts are very heavy and we have spent a lot of time talking and a lot of time on our knees.

I want to end on a good note so I will tell you what we are doing tomorrow, Cincinnati has one of the nations top zoo's and Ronald McDonald has free tickets! Cloey will be done at the hospital by about one and then we will head over. Giraffe is favorite and she is excited. Thanks to everyone for all the well wishes!

Day 2

very long day, though not as bad as yesterday. no answers yet. tests planned starting tomorrow. It looks like the heavy decisions for Ty & I are starting.

Also, everyone was right this is a scary part of town, I am trying to not get out of the car at all. It seems worse then downtown phoenix!

on a good note, we got into Ronald McDonald house and will be moving over there tomorrow

Monday, July 19, 2010

We Made It

we are here. The day started out really good, we had some help with Cal & Lainey so Ty was able to take us to the airport & get an escort pass to help me get through security. Just to give you an idea we had about 10 bins and her wheelchair, all medical supplies and machines that cause some kind of red flag and have to be tested, so I was real glad he was there to help. unfortunately the day went downhill from there. Cloey was having a hard time breathing on the airplane so I got her ventilator from the over head compartment. it's heavy so I had to have help, and unpack it in the aisle, only to realize the cord from the vent to the battery was missing, so I packed it all up and sat back down and turned her oxygen up hoping that would help, it did for a while but turning it up made the battery die sooner. I didn't do anything at first because I wasn't sure what I would do and I was hoping she would come around. She got lethargic and sweaty and her stats dropped to 78 (bad). so I got back out and got the ventilator down, it has an hour of internal battery and we had over an hour and a half left. so I hooked her up, leaving my only option to bag her (basically CPR) when the battery died if she was still doing so bad. Thankfully, her stats came back up to the low 90's and when the battery died she was stable enough to make it the rest of the flight. It was super scary though, my hands were shaking.

So we got off the flight and went to baggage claim. We have 4 bags that are 50lbs each, plus what I had brought on the plane. A skycab was quick to help and took me to rental car so that was cool, but when I got there the company would not honor my reservation. Long story, but basically even though they accept debit cards & I had no problem making the reservation with it & I was willing to pay in advance with the debit, they would not give me a car without a major credit card which I don't have. The other four counters were all out of cars. One said they might have one in 2-3 hours. so I had to load all the bags on a cart and push cloey and the bags to the other side of the parking lot. they fell 3 times & I could barely lift them. Once somebody helped me pick them up though. so I get to the other side and all 4 of those companies are out of cars as well. I had to give cloey a feeding so I did that while I tried to figure out what to do, while doing that I noticed that her diaper had leaked. I had to leave the bags and take her in the bathroom to clean her up, change her clothes and wipe down the chair. At this point I was pretty frazzled. I hadn't eaten since a bagel that morning. It was 7 here, about 4 there. This also meant I was now driving from Columbus to Cincinnati in the dark. I called Ty and told him everything and started crying because we couldn't come up with anything to do but wait. I hung up and decided to try to make it back across the street to the airport with Cloey and all her bags so I could at least eat and then try to figure something out. I made it almost out of the parking lot when a lady working at one of the counters chased after me. She had heard me crying to Ty and called her manager and got me a car. (yay!) the only problem now is it was quite a bit more $ and I have to try and get the $ back from orbitz for the one I had reserved. It took me a long time getting all of the stuff into a car instead of an SUV, but I did it, found a McDonalds and was on the road. It took about 2hrs to get here.

It was now dark. All the handicapped places were taken so I was parked in the back of the lot. I have been warned by several people that this is not a good neighborhood. I asked the guy at the counter for help, but he said he was the only one working & couldn't go out. So I decided to take Cloey up to the room and leave her there by herself while I went & got the bags. I need all of her medical supplies to set her up to sleep so I had to get the bags there was no way I could wait till morning. We were almost to our room and Cloey threw up all over herself and the hallway, I took her shoes off (they were soaked & I didn't want her to track it all over) and pulled a table over the puke and had to tell the guy. I took Cloey in the room to clean her up & then we went out to get the bags. I was afraid if she puked again it would get in her trach and no one would be watching her. we got all the bags in and then I gave her a bath, did her night care & set all of her machines up.

Then as I got my netbook out to post this, I found my broken camera. The screen is all smashed. It's not a super nice one or anything but we had been borrowing my grandma's for a long time and finally been able to buy this one not even a year ago, so I'm totally heartbroken about it.

Sorry this post is such a rant, It is 2:30am here and Cloey's first appointment is at 9am tomorrow, so I should be sleeping. But I am feeling pretty beat down right now. I know it's at least partly because how she acted on the plane confirms her dependency on the vent. I had really though she'd be able to do it on just oxygen. I am sure in the morning I will see more of the things that didn't go wrong. Most of what did, is material and will be forgotton soon enough, being here to help Cloey is what will last. At the end of this horrible day my heart smiles just a little to know we are taking Cloey to the best to give her the best life possible and I will be able to do that for her soon now.