Such a terrible vacation

pampam

DIS Veteran
Joined
Aug 13, 2003
A.K.A. How I met the most compassionate people.

It has been 2 months since this happened. Now things are settling down, and I'm willing to share my story.

DD and I flew out from Toronto for our annual pilgrimage to WDW.. The following day, DH applied for his passport, thinking he may join us later. It is not his happy place, but DD enjoys it so usually it is just Mom and Daughter time. We had been there about a week, seeing the parks, shopping, just taking our time. We had a handicap room at Pop, close to the food court, and it was a great. I must add that DD has Down's Syndrome and all the health problems that go with it. So she uses a wheelchair, oxygen, and we just take our time, doing things at her speed. I must also state that DD never complains. Also that I am not medically trained, so please don't fault me. I do the best I can.

On Monday Jan. 23 DD was still sleeping so I took our cups and went for the coffee run. Just outside our door was the pool, and they were doing c.p.r. training with the life guards. I had taken c.p.r training but it was a few years ago, and I could use a refresher course too. One forgets so much, and things change. I found it very interesting. One never knows when such things will be needed, so I watched what was going on behind the fence for 6 or 7 minutes. 30 compressions 2 puffs. 30 compressions 2 puffs. Very interesting. I went and checked on DD, then went back out for the coffee. By this time, the lifeguards had changed partners and were at the beginning of the training. Someone has collapsed. What do we do? Are you all right? Do you need help? Are they breathing? Do they have a pulse? Are they younger than 8 years old? Why do we need to know this? 30 compressions and 2 puffs. I watched for another 5 minutes then carried on for the coffee.

We went to Disney Studios that day. DD wore her Belle gown and looked just wonderful. I noticed that she seemed a little off. I took her oxygen, not too bad, but the oximeter said her pulse was not regular..60, 55, 70, 40, 66, 35, 72 etc. Is this thing acting up? I went to first aid and asked them to check her pulse. The nurse didn't give me her numbers, but checked it a few times, said it seemed ok. She didn't notice anything unusual. I even used the oximeter on DD at the same time and the readings were the same as hers. Ok. Just a fluke. DD seemed ok. We carried on.

The next morning, we slept in. When I realized we were running late, I woke up DD and got washed and dressed. DD got up, I grabbed the cups, but decided I would phone DH first while DD got up and ready. I was sitting on one side of the king bed talking to him and I felt DD get on the other side of the bed. The conversation carried on but then I excused myself while I checked on DD. She was laying on the bed with her legs hanging over the bed to the floor, her arms above her head. "That's nice" I thought , having a good stretch. I looked at her, her eyes were open, mouth open, but she was gone, a grey colour. I tried to rouse her, but couldn't. Ran to the phone, told DD I'd call him back. Tried to call 911 but couldn't get out of the Disney phone system. Opened the door and called "Call 911, call 911, I need help here in this room. Call 911" Rushed back to DD. She wasn't breathing. I started c.p.r. Someone rushed into the room and reminded me she needed to be on the floor. Duh!! I knew that, just wasn't thinking. Dragged her on the floor and resumed c.p.r. He said can I help? I said, "yes, you see that machine there? It's oxygen. Turn it up as high as it will go!" 30 compressions 2 puffs. 30 compressions 2 puffs. Come on baby! you can do this.. Mommy needs you. 30 compressions 2 puffs, over and over. DD gave kind of a gurgle, as the paramedics burst into the room. By this time a small crowd had gathered at the door. I told them that DD just make a sound but not sure if she was breathing. Not! Cardiac Arrest. They took over. 30 compressions 2 puffs again and again. No response. Defibrillator, everyone stand clear! The defibrillator said not to zap her, and she began to rouse. She had ben in vtec for 6-7 minutes. By the time she was on the gurnney she was conscious, and by the time she got into the ambulance she was "chatty Cathy". I grabbed my bag, her bag, a file with her medical history, and rushed after them. As I climbed into the front of the ambulance, the manager of Pop gave me her card with her own phone number on the back, telling me to contact her if there was anything I needed. Off to Celebration Hospital, all the time, telling her that I was here in the front seat, it was going to be ok. Trying to tell myself the same thing.

We arrived at Celebration, and she was stabilized. The staff there said this never happens. They expected her to be intubated, on life support. I figured they were trying to be kind. I phoned DH to update him, and then we were transferred to Florida Hospital. Enroute, they again said "We never see this! This is so encouraging to us! On tv it happens all the time, but we never, never see this. By starting early cpr, you saved her life." I sure didn't feel that way! I was grieving over a loss, so afraid I would loose her.

At Florida Hospital, as you can imagine, it was a blur. She was put in i.c.u. and we met many many doctors. They were so relieved that I had brought her records with her medical history. All sorts of nurses and others came in to meet us. They wanted to meet the mom who did cpr and saved her daughters life. Meanwhile I was feeling like a failure. Tests were done, which were compared to the records I brought. it was determined that there was no damage done to her heart. The echocardiogram which I had brought with us was the same as the one done there. I had forgotten the charger for my phone, and DD's glasses, so I phone the number the manager of Pop had given me and those things were rushed to the hospital.

The next day I phoned the insurance company and gave them the file number I had been given. They said, don't worry. We are going to look after you. One of the pediatric cardiologists wandered in as I was talking to them on speaker phone, so he overheard some of the conversation. He asked who I was talking to and was very impressed. He said that in Fla the insurance companies were not so nice. They didn't even want to talk to you. I also phoned some friends from home who spend their winters in Florida about an hour away. I felt alone and needed some support. I phoned my congregation at home, and family. This could be terrible. Everyone needed to be informed.

The doctors were very impressed that I had all the information they needed to give DD her care. Very supportive, except once. DD needed a defibrillator . She was not a candidate for that type of surgery, and one doctor told me if it happened again, just to let her go. Don't do cpr again. Well! That just added to the burden I was already carrying. I'm alone, fighting this , trying to cope. I explained to him that DD loves life. She line dances, plays cards at the senior center, has tea with the older ladies, has a whole congregation of people praying for her right now and is a vibrant part of the community. Everybody who knows her loves her, and if they don't love her it's only because they don't know her. My daughter is not disposable, and as long as she is enjoying life, and takes an interest in things I will fight for life right along side of her. If she loses interest in life, or seems to have given up, then I will understand but until then, I'll be cheering her on. The following day, his attitude had changed. He walked into the room and said "did you know that your daughter is breaking records? She is the longest living person with that type of heart defect. There is no documented evidence anywhere of anyone living as long as she has with her heart problems" After that he was most supportive.

Life is getting busy here, so I will add to this report as soon as I can.
 
A.K.A. How I met the most compassionate people.

It has been 2 months since this happened. Now things are settling down, and I'm willing to share my story.

DD and I flew out from Toronto for our annual pilgrimage to WDW.. The following day, DH applied for his passport, thinking he may join us later. It is not his happy place, but DD enjoys it so usually it is just Mom and Daughter time. We had been there about a week, seeing the parks, shopping, just taking our time. We had a handicap room at Pop, close to the food court, and it was a great. I must add that DD has Down's Syndrome and all the health problems that go with it. So she uses a wheelchair, oxygen, and we just take our time, doing things at her speed. I must also state that DD never complains. Also that I am not medically trained, so please don't fault me. I do the best I can.

On Monday Jan. 23 DD was still sleeping so I took our cups and went for the coffee run. Just outside our door was the pool, and they were doing c.p.r. training with the life guards. I had taken c.p.r training but it was a few years ago, and I could use a refresher course too. One forgets so much, and things change. I found it very interesting. One never knows when such things will be needed, so I watched what was going on behind the fence for 6 or 7 minutes. 30 compressions 2 puffs. 30 compressions 2 puffs. Very interesting. I went and checked on DD, then went back out for the coffee. By this time, the lifeguards had changed partners and were at the beginning of the training. Someone has collapsed. What do we do? Are you all right? Do you need help? Are they breathing? Do they have a pulse? Are they younger than 8 years old? Why do we need to know this? 30 compressions and 2 puffs. I watched for another 5 minutes then carried on for the coffee.

We went to Disney Studios that day. DD wore her Belle gown and looked just wonderful. I noticed that she seemed a little off. I took her oxygen, not too bad, but the oximeter said her pulse was not regular..60, 55, 70, 40, 66, 35, 72 etc. Is this thing acting up? I went to first aid and asked them to check her pulse. The nurse didn't give me her numbers, but checked it a few times, said it seemed ok. She didn't notice anything unusual. I even used the oximeter on DD at the same time and the readings were the same as hers. Ok. Just a fluke. DD seemed ok. We carried on.

The next morning, we slept in. When I realized we were running late, I woke up DD and got washed and dressed. DD got up, I grabbed the cups, but decided I would phone DH first while DD got up and ready. I was sitting on one side of the king bed talking to him and I felt DD get on the other side of the bed. The conversation carried on but then I excused myself while I checked on DD. She was laying on the bed with her legs hanging over the bed to the floor, her arms above her head. "That's nice" I thought , having a good stretch. I looked at her, her eyes were open, mouth open, but she was gone, a grey colour. I tried to rouse her, but couldn't. Ran to the phone, told DD I'd call him back. Tried to call 911 but couldn't get out of the Disney phone system. Opened the door and called "Call 911, call 911, I need help here in this room. Call 911" Rushed back to DD. She wasn't breathing. I started c.p.r. Someone rushed into the room and reminded me she needed to be on the floor. Duh!! I knew that, just wasn't thinking. Dragged her on the floor and resumed c.p.r. He said can I help? I said, "yes, you see that machine there? It's oxygen. Turn it up as high as it will go!" 30 compressions 2 puffs. 30 compressions 2 puffs. Come on baby! you can do this.. Mommy needs you. 30 compressions 2 puffs, over and over. DD gave kind of a gurgle, as the paramedics burst into the room. By this time a small crowd had gathered at the door. I told them that DD just make a sound but not sure if she was breathing. Not! Cardiac Arrest. They took over. 30 compressions 2 puffs again and again. No response. Defibrillator, everyone stand clear! The defibrillator said not to zap her, and she began to rouse. She had ben in vtec for 6-7 minutes. By the time she was on the gurnney she was conscious, and by the time she got into the ambulance she was "chatty Cathy". I grabbed my bag, her bag, a file with her medical history, and rushed after them. As I climbed into the front of the ambulance, the manager of Pop gave me her card with her own phone number on the back, telling me to contact her if there was anything I needed. Off to Celebration Hospital, all the time, telling her that I was here in the front seat, it was going to be ok. Trying to tell myself the same thing.

We arrived at Celebration, and she was stabilized. The staff there said this never happens. They expected her to be intubated, on life support. I figured they were trying to be kind. I phoned DH to update him, and then we were transferred to Florida Hospital. Enroute, they again said "We never see this! This is so encouraging to us! On tv it happens all the time, but we never, never see this. By starting early cpr, you saved her life." I sure didn't feel that way! I was grieving over a loss, so afraid I would loose her.

At Florida Hospital, as you can imagine, it was a blur. She was put in i.c.u. and we met many many doctors. They were so relieved that I had brought her records with her medical history. All sorts of nurses and others came in to meet us. They wanted to meet the mom who did cpr and saved her daughters life. Meanwhile I was feeling like a failure. Tests were done, which were compared to the records I brought. it was determined that there was no damage done to her heart. The echocardiogram which I had brought with us was the same as the one done there. I had forgotten the charger for my phone, and DD's glasses, so I phone the number the manager of Pop had given me and those things were rushed to the hospital.

The next day I phoned the insurance company and gave them the file number I had been given. They said, don't worry. We are going to look after you. One of the pediatric cardiologists wandered in as I was talking to them on speaker phone, so he overheard some of the conversation. He asked who I was talking to and was very impressed. He said that in Fla the insurance companies were not so nice. They didn't even want to talk to you. I also phoned some friends from home who spend their winters in Florida about an hour away. I felt alone and needed some support. I phoned my congregation at home, and family. This could be terrible. Everyone needed to be informed.

The doctors were very impressed that I had all the information they needed to give DD her care. Very supportive, except once. DD needed a defibrillator . She was not a candidate for that type of surgery, and one doctor told me if it happened again, just to let her go. Don't do cpr again. Well! That just added to the burden I was already carrying. I'm alone, fighting this , trying to cope. I explained to him that DD loves life. She line dances, plays cards at the senior center, has tea with the older ladies, has a whole congregation of people praying for her right now and is a vibrant part of the community. Everybody who knows her loves her, and if they don't love her it's only because they don't know her. My daughter is not disposable, and as long as she is enjoying life, and takes an interest in things I will fight for life right along side of her. If she loses interest in life, or seems to have given up, then I will understand but until then, I'll be cheering her on. The following day, his attitude had changed. He walked into the room and said "did you know that your daughter is breaking records? She is the longest living person with that type of heart defect. There is no documented evidence anywhere of anyone living as long as she has with her heart problems" After that he was most supportive.

Life is getting busy here, so I will add to this report as soon as I can.

Wow! How scary! I'm so happy your daughter made it through! :hug:

I kind of feel that everything happens for a reason. For some reason you took the time to watch the lifeguards do their CPR training and then you needed to use those skills the very next day. Amazing! :)
 
Pampam. My heart breaks that you had to go through all of this without your DH and your other friends and family by your side. Bless you for being so prepared and such a rock! You are doing such an amazing service for your daughter to be such a good medical advocate for her. Some parents don't find the strength in such stressful situations to do that. Prayers sent up for you all that your situation would stabilize and that you'd be surrounded by peace and that your DD continues to improve and gain strength.
 
Continued

Toronto general hospital wanted her to be sent back to Toronto. Fla hospital said ok. Who is the cardiologist. T g said he was on an indefinite leave of absence. Fla said not sending her back without a cardiologist. They said ok we have one for her. Send her back. Meanwhile insurance was trying to dispute our coverage. Another day passes. We got 3 quotes for medical flight home. Time is passing and chaos reigns supreme. On the weekend all offices are closed.

Meanwhile at home DJ is trying to get his passport expediated. He got a flight for Friday but had to show proof of this before that could happen. This had to be done on the internet and DH isn't able to do this so he went to the shell gas station in our small town and they looked after it. Word of mouth spread and now the whole town knows and are cheering for dd. she was now on prayer lists of different churches because it isa small town and like I said everyone loves her.

Dh was able to fly down and his sister flew down too. Dh got a room at a nearby hotel and we ended up spelling each
 


Continued

Toronto general hospital wanted her to be sent back to Toronto. Fla hospital said ok. Who is the cardiologist. T g said he was on an indefinite leave of absence. Fla said not sending her back without a cardiologist. They said ok we have one for her. Send her back. Meanwhile insurance was trying to dispute our coverage. Another day passes. We got 3 quotes for medical flight home. Time is passing and chaos reigns supreme. On the weekend all offices are closed.

Meanwhile at home DJ is trying to get his passport expediated. He got a flight for Friday but had to show proof of this before that could happen. This had to be done on the internet and DH isn't able to do this so he went to the shell gas station in our small town and they looked after it. Word of mouth spread and now the whole town knows and are cheering for dd. she was now on prayer lists of different churches because it isa small town and like I said everyone loves her.

Dh was able to fly down and his sister flew down too. Dh got a room at a nearby hotel and we ended up spelling each
Sorry some of my post didn't go thru. I'll try again later
 
Oh my gosh pampam. I couldn't imagine handling that alone. So glad people at the hotel helped.
 


Sending prayers for your daughter. So scary for you both to go through this, sending prayers your way. Please keep us updated on how she is doing.
 
OP here. So, yes, My DH picked up his passport in Mississauga and went straight to the airport. He and his sister flew out that Friday night getting to Orlando about midnight. We were told that if she was medically evacuated we might only have 10 minutes notice. Meanwhile DH's nephew and his fiance flew down the next day as a surprise for DD. There is a comfort Inn about 2 blocks from the hospital and it is a very safe area, so we were able to walk back and forth there. DH and I took turns sleeping there so every other night we could get a better sleep if we could sleep which was hardly ever but we were able to shower and try to refresh ourselves. On Sunday I called the manager of Pop and explained that we would have to check out. I didn't know what was going to happen. If we could get back and salvage a few days in DD's happy place we were going to try, but we might be flying home at any time too. WDW paid for my taxi back to Pop and to the comfort Inn so I could clear out our room. That was a very trying time, knowing we might never see WDW again.

The insurance was now making everyone jump through hoops. I signed the releases for our family doctor to release info to them. Debbie, at the dr's asked them what info they needed. They faxed what they needed, Debbie filled it out and sent it back. Insurance said that's not what we want. Debbie said tell me what you want. Insurance said send us the whole file. Debbie said I'm not sending the whole file, it's 4 inches thick. You tell me what you want. They said ok, send the last 6 months of her chart. So she did. Then they said they needed the last 6 months records from the cardiologist. I signed the release. But remember, the cardiologist is on a leave of absence and his office is closed. So I phoned medical records at Tor Gen, and gave them permission to release the info to the insurance co. They said the insurance co never requested it!!! I said i would have them fax the request, but medical records doesn't accept faxes or emails. The insurance company must pay for this information and it will not be released until it is paid for. Now we are in quite a pickle. Insurance is saying we don't have coverage.

So now there are 3 suitcases, carry ons, a wheelchair, portable oxygen concentrator and a big medical bag in the room at Comfort inn. If DD is medically transported to Toronto can I travel with her? Can we take anything on that plane? How can DH take all this stuff with him if he is left to fly on his own? So many things to consider. It could cost $30,000 to fly her back to Toronto. As it turned out, this couldn't happen anyway. She could not be transported if she didn't have a bed at Tor Gen and are you sitting down? There was a 2 week wait for a bed, but Tor GGen wasn't worried. She was in a safe place and being taken care of. DH and I were frantic. We could very well loose the farm over this. Time is going on, DD needs a defibrillator but she is not a candidate for such surgery, but wait! There is a new type of defirillator out. The leads do not go into the heart. Fl hospital can perform such surgery. They have implanted many defibrillators and have a surgeon who has implanted more of this type of defibrillator than any one else. However, do we have the coverage? Insurance would like it done in Toronto. Well, I guess so. Then they wouldn't have to pay for it, Ohip , or provincial medical coverage will pay. But the insurance will not say if we have coverage until they get the 6 month report from the cardiologist who is on leave of absence. More to follow
 
OP here with more of the story. DD has been in ICU for 2 weeks now. We couldn't move forward or even back. Then, the answer to our prayers.

The Electrophysiologist cardiologist came in the room, saying he had good news for us. Hey, we can use some good news. He asked us not to tell anyone, so I can't say exactly what follows, but as he was speaking, we got our miracle. Please use your imagination. The following day, DD was wheeled down for surgery. She had a subcutaneous defibrillator implanted just under the skin below her left armpit, with a lead going down the left side, under the left breast, and then up between the two breasts. She had a surgeon who has implanted more of these devices than anyone else. Her anethesiologist had a 16 year old son with Down's Syndrome. Meanwhile, we paced back and forth in the waiting area. The surgery took longer than they said it would. Finally, we were ushered into the consultation room where the surgeon will talk to us. He came in and told us how it went (fine) and as he was talking, the nurse burst into the room and said "You've got to come and see this!" He rushed us and the surgeon down corridors and through doorways to the recovery room. There was DD sitting up in bed, holding court. Everyone was gathered at the foot of the bed getting such a kick out of her. She was smiling, and talking, charming the whole staff. She was so excited to see us. After a few minutes she was taken back to her room. Some of our friends came to see us and no way no how was DD going to go to sleep. She stayed awake, refusing to miss a minute of anything. What a Girl!!

I phoned the insurance company after the surgery. I hope you are sitting down. They said now she was covered! I could have choked someone. When we learned that she was to be discharged I called the insurance people again. Did they want us to fly straight home? We don't have a reservation. No, no, you are covered. Stay if you want! I phoned the manager of Pop and explained that we were going to try to squeeze a few more days into the vacation. DH was now with us, so we would need a bigger room for a week. DD had appointments to have the defibrillator checked, another trip to Orlando to see the electro-cardiologist, and another visit on our last day to have her surgical staples removed. She had 18 staples on her left side, and 8 between the breasts. WDW looked after us and put us in a suite at Art of Animation, ground floor with a living room, kitchen, bedroom , regular bathroom, and another bathroom with a roll in shower. They were so good to us. Everyone we met was wonderful to us.

Two days later, she was discharged. We knew at 8:00 am that she would be, but it took all day to get the papers . In the meantime, there was a continuous stream of people coming in to wish her well. Many, many nurses, doctors she had met over the past two and a half weeks, coming not to check her but to say goodbye. One of the doctors said that DD was the longest survivor with that heart defect. Apparently there is no documented evidence of any one living that long. Most die by the time they are 5 years old. DD turned 46 in July. Cleaning ladies, chaplins, Case managers, Child care workers, on and on. I felt I should put our tea and cookies for this receiving line. At 5:00 pm the discharge papers finally arrived, and we were on our way, Still, nurses and attendants were rushing up to give us a hug and say goodbye. We stayed over at Comfort Inn, then phoned the insurance gain to make sure we were ok, then off to Art of Animation. The manager phoned to see that we were being looked after and the manager of housekeeping dropped by to make sure we had everything we needed.

DD was very weak. I could give her a shampoo or a shower, but she was too weak for both. When we went to the parks she could only do 1 thing. Then she was done for the day. The exception was one day at Epcot when she did the Frozen ride, and met Mary Poppins too. When we got back from Epcot, we discovered a bag from Art of Animation, with cookies, juice, water, cheese, crackers, trail mix, more trail mix, fruit, so many things. We couldn't eat it all. That sure was a nice surprise.

After a week, we flew home. I know we will never go back. Even if the insurance or DH said it would be ok, I don't believe I ever could . It was the most traumatic thing you could ever imagine. Whenever I would close my eyes to sleep, I would see cardboard caskets being loaded onto airplanes. I would dream that I was driving down the highway with DD beside me , glancing over to her to see she was gone, dragging her out of the car and doing cpr again, or that she would wake up with the defibrillator lying beside her. Horrible, horrible nightmares.

All of this happened a year ago today. Today I'm celebrating a 1 year anniversary with DD, hugging her to the point of her frustration but that's ok, I've got my girl. The post traumatic stress is slowly dissolving and DD is doing fine. To look at her you would never know that she was once clinically dead for 7 minutes. They said most people are afraid to start cpr, afraid of hurting the person. I must add, DD was so sore. She cried whenever her bed was adjusted or she had to move. No bones were broken, but she had a badly bruised sternum. I was I learned that the mortality rate is 95% if one goes into cardiac arrest. Only 5 % survive, and most of those have physical or cognitive impairment, but because I started the cpr right away there was no damage done. I mentioned those statistics to a CM and she told me no, in WDW the statistics go up to 28% survival because the paramedics are there so quickly. So it couldn't have happened in a better place.

We took DD to Toronto General, where the head of the device department told us that DD has the Cadillac of defibrillators. It wasn't approved in Canada, so they had to apply to Ottawa to be able to download the software to check it. It has been checked several times now, and DD is doing fine. She went through a period where the heart rate was very erratic, 77, 55, 62, 28, 47 62, 35 etc. The Dr put a holter monitor on her for 3 days and in that span of time, her heart stopped 248 times. Well, I assure you that put me in another tailspin. Apparently, the medication Florida Hospital put her on can cause this, so the medication was discontinued. The med was for fibrillation, but the icd should help in that regard. So, ya. To look at DD you would never suspect that she has these issues. My little energizer bunny keeps going and going.
 
@pampam, I cannot begin to imagine how terrifying those days must have been for you. One thing is for sure, your DD has got a superhero for a mom. So happy to read your DD is doing better now! A very smart person once told me something that I have discovered to be very true, “God draws straight with crooked lines.”
 
What a horrible wonderful story. I'm glad to hear your daughter is doing so well. Hugs to you!
 
I can only imagine what a horrible time that was for you. I'm so very glad you were able to start CPR so quickly, and so glad that your daughter was able to get the care she needed.
 
You and your daughter are a absolute inspiration!!! Your a fantastic mother, I am so glad this turned out so well!! Hugs and well wishes to you and tour family!!!!
 
OP here with more of the story. DD has been in ICU for 2 weeks now. We couldn't move forward or even back. Then, the answer to our prayers.

The Electrophysiologist cardiologist came in the room, saying he had good news for us. Hey, we can use some good news. He asked us not to tell anyone, so I can't say exactly what follows, but as he was speaking, we got our miracle. Please use your imagination. The following day, DD was wheeled down for surgery. She had a subcutaneous defibrillator implanted just under the skin below her left armpit, with a lead going down the left side, under the left breast, and then up between the two breasts. She had a surgeon who has implanted more of these devices than anyone else. Her anethesiologist had a 16 year old son with Down's Syndrome. Meanwhile, we paced back and forth in the waiting area. The surgery took longer than they said it would. Finally, we were ushered into the consultation room where the surgeon will talk to us. He came in and told us how it went (fine) and as he was talking, the nurse burst into the room and said "You've got to come and see this!" He rushed us and the surgeon down corridors and through doorways to the recovery room. There was DD sitting up in bed, holding court. Everyone was gathered at the foot of the bed getting such a kick out of her. She was smiling, and talking, charming the whole staff. She was so excited to see us. After a few minutes she was taken back to her room. Some of our friends came to see us and no way no how was DD going to go to sleep. She stayed awake, refusing to miss a minute of anything. What a Girl!!

I phoned the insurance company after the surgery. I hope you are sitting down. They said now she was covered! I could have choked someone. When we learned that she was to be discharged I called the insurance people again. Did they want us to fly straight home? We don't have a reservation. No, no, you are covered. Stay if you want! I phoned the manager of Pop and explained that we were going to try to squeeze a few more days into the vacation. DH was now with us, so we would need a bigger room for a week. DD had appointments to have the defibrillator checked, another trip to Orlando to see the electro-cardiologist, and another visit on our last day to have her surgical staples removed. She had 18 staples on her left side, and 8 between the breasts. WDW looked after us and put us in a suite at Art of Animation, ground floor with a living room, kitchen, bedroom , regular bathroom, and another bathroom with a roll in shower. They were so good to us. Everyone we met was wonderful to us.

Two days later, she was discharged. We knew at 8:00 am that she would be, but it took all day to get the papers . In the meantime, there was a continuous stream of people coming in to wish her well. Many, many nurses, doctors she had met over the past two and a half weeks, coming not to check her but to say goodbye. One of the doctors said that DD was the longest survivor with that heart defect. Apparently there is no documented evidence of any one living that long. Most die by the time they are 5 years old. DD turned 46 in July. Cleaning ladies, chaplins, Case managers, Child care workers, on and on. I felt I should put our tea and cookies for this receiving line. At 5:00 pm the discharge papers finally arrived, and we were on our way, Still, nurses and attendants were rushing up to give us a hug and say goodbye. We stayed over at Comfort Inn, then phoned the insurance gain to make sure we were ok, then off to Art of Animation. The manager phoned to see that we were being looked after and the manager of housekeeping dropped by to make sure we had everything we needed.

DD was very weak. I could give her a shampoo or a shower, but she was too weak for both. When we went to the parks she could only do 1 thing. Then she was done for the day. The exception was one day at Epcot when she did the Frozen ride, and met Mary Poppins too. When we got back from Epcot, we discovered a bag from Art of Animation, with cookies, juice, water, cheese, crackers, trail mix, more trail mix, fruit, so many things. We couldn't eat it all. That sure was a nice surprise.

After a week, we flew home. I know we will never go back. Even if the insurance or DH said it would be ok, I don't believe I ever could . It was the most traumatic thing you could ever imagine. Whenever I would close my eyes to sleep, I would see cardboard caskets being loaded onto airplanes. I would dream that I was driving down the highway with DD beside me , glancing over to her to see she was gone, dragging her out of the car and doing cpr again, or that she would wake up with the defibrillator lying beside her. Horrible, horrible nightmares.

All of this happened a year ago today. Today I'm celebrating a 1 year anniversary with DD, hugging her to the point of her frustration but that's ok, I've got my girl. The post traumatic stress is slowly dissolving and DD is doing fine. To look at her you would never know that she was once clinically dead for 7 minutes. They said most people are afraid to start cpr, afraid of hurting the person. I must add, DD was so sore. She cried whenever her bed was adjusted or she had to move. No bones were broken, but she had a badly bruised sternum. I was I learned that the mortality rate is 95% if one goes into cardiac arrest. Only 5 % survive, and most of those have physical or cognitive impairment, but because I started the cpr right away there was no damage done. I mentioned those statistics to a CM and she told me no, in WDW the statistics go up to 28% survival because the paramedics are there so quickly. So it couldn't have happened in a better place.

We took DD to Toronto General, where the head of the device department told us that DD has the Cadillac of defibrillators. It wasn't approved in Canada, so they had to apply to Ottawa to be able to download the software to check it. It has been checked several times now, and DD is doing fine. She went through a period where the heart rate was very erratic, 77, 55, 62, 28, 47 62, 35 etc. The Dr put a holter monitor on her for 3 days and in that span of time, her heart stopped 248 times. Well, I assure you that put me in another tailspin. Apparently, the medication Florida Hospital put her on can cause this, so the medication was discontinued. The med was for fibrillation, but the icd should help in that regard. So, ya. To look at DD you would never suspect that she has these issues. My little energizer bunny keeps going and going.

Only one thing I can say: God Bless You and Your wonderful Daughter!
 

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