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.
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.