Amber's Update
I am at a loss for words. I cannot possibly understand how I would feel if I had hours to live. How would I close my eyes. How could I go on knowing that I would not experience anything else in this Earthly life. Knowing that life as I have always known it would go on for everyone else, but I would sleep. I get a sense that I would be much like Amber. Knowing and believing in our Heavenly Father, but wishing I could prolong our meeting. I am scared for her. Scared for her family. How do you say goodbye for real...so many times. Please say a prayer for these beautiful people.
So just a quick update. We went in on Mon to have platelets. They were out and had to send them from trumbull. Anyway, Jim took her in and I stayed home to set up her toys that came in on the van from CA. Well I got a call from the nurse trying to get her medicine ordered. She told me the docs talked to her and she is heading to the hospital and she told me to get a ride in and let the family know. So instantly we all headed to the hospital. I talked to Jim on the way and he was unaware of anything. So when I got there they said that they hadn't seen someone come in that bad and noticed that she seemed worse than from the ER. Finally the platelets came in and around 5 we were getting out of there. The came in and told us that she had about 12-24 hours but admitted that this is Amber and we know she doesn't follow any rule book. We came home and I had to hold her mouth closed on the way just so that she could breathe with her nose since she was on a different type of oxygen tank. She always told us seh wanted to be at home so I was trying to make sure that happened that way. Well we got home and Amber laid in her room for awhile. Then with Amber being Amber she wanted to watch home videos. Tuesday we continued the same. So 24 hours came and went and Amber was still holding her own. The nurses were amazed that she was actually awake and coherent on that much medicine. She has had sleepy moments but then she has also had those fun conversation times too. Last night Amber seemed to have this jaw pain that was relentless and no amount of medicine was helping. Finally at about 6 this morning we talked to the hospice nurse and she came out. We told her what the docs had us do overnight. She was shocked Amber was still awake when she got there. She told us that the pain can be caused from her heart. She did say that her heart was racing and could suffer a heart attack rather than her lung now. So she told us that she may be holding on because she thinks we are not ready to let her go. I don't want to let her go but I don't want her in so much pain and forced to sit by and do nothing for her. So the nurse told us to talk to her and then she would increase the medicine and to call the family because she would probably not wake up from this amount. So we did and after we spent about a half hour we called in the family and made calls to the ones that weren't here. So we up'd the dose and she went to sleep. Only to wake up a little while later still in pain. We continued to up the dose and she is now on 50 mg continuously with a bolus dose of 60! The nurse said she is on enough medicine that if divided for all the people we had here could put us all to sleep. Yet she continued to wake up. Pain controlled finally and got dressed, went downstairs to watch video, went back upstairs to watch some movies and even played UNO and LCR with us! My only fear in all of this is that if something does start very quickly we may not be able to find that dose that will let her sleep through it comfortably. For now I am just enjoying the moments. The things that she has done and said truly show the courageous and compassionate person that she is. Still looking out for Brittany and Nick and others before herself. She did tell us that she had a dream that she was in heaven. I think she is letting us know that she will be ok and is less scared. Well I have to go run and watch some tv with her. Her uncle is sitting with her right now and I don't want to lose any precious moment but I know so many of you that have been there for us so much wanted and needed to know what was going on. We will update soon when we can. I hope you understand. Please I ask you for your prayers that whenever the time is here that she not be in pain. Melissa
Here is Melissa's update:
So just a quick update. We went in on Mon to have platelets. They were out and had to send them from trumbull. Anyway, Jim took her in and I stayed home to set up her toys that came in on the van from CA. Well I got a call from the nurse trying to get her medicine ordered. She told me the docs talked to her and she is heading to the hospital and she told me to get a ride in and let the family know. So instantly we all headed to the hospital. I talked to Jim on the way and he was unaware of anything. So when I got there they said that they hadn't seen someone come in that bad and noticed that she seemed worse than from the ER. Finally the platelets came in and around 5 we were getting out of there. The came in and told us that she had about 12-24 hours but admitted that this is Amber and we know she doesn't follow any rule book. We came home and I had to hold her mouth closed on the way just so that she could breathe with her nose since she was on a different type of oxygen tank. She always told us seh wanted to be at home so I was trying to make sure that happened that way. Well we got home and Amber laid in her room for awhile. Then with Amber being Amber she wanted to watch home videos. Tuesday we continued the same. So 24 hours came and went and Amber was still holding her own. The nurses were amazed that she was actually awake and coherent on that much medicine. She has had sleepy moments but then she has also had those fun conversation times too. Last night Amber seemed to have this jaw pain that was relentless and no amount of medicine was helping. Finally at about 6 this morning we talked to the hospice nurse and she came out. We told her what the docs had us do overnight. She was shocked Amber was still awake when she got there. She told us that the pain can be caused from her heart. She did say that her heart was racing and could suffer a heart attack rather than her lung now. So she told us that she may be holding on because she thinks we are not ready to let her go. I don't want to let her go but I don't want her in so much pain and forced to sit by and do nothing for her. So the nurse told us to talk to her and then she would increase the medicine and to call the family because she would probably not wake up from this amount. So we did and after we spent about a half hour we called in the family and made calls to the ones that weren't here. So we up'd the dose and she went to sleep. Only to wake up a little while later still in pain. We continued to up the dose and she is now on 50 mg continuously with a bolus dose of 60! The nurse said she is on enough medicine that if divided for all the people we had here could put us all to sleep. Yet she continued to wake up. Pain controlled finally and got dressed, went downstairs to watch video, went back upstairs to watch some movies and even played UNO and LCR with us! My only fear in all of this is that if something does start very quickly we may not be able to find that dose that will let her sleep through it comfortably. For now I am just enjoying the moments. The things that she has done and said truly show the courageous and compassionate person that she is. Still looking out for Brittany and Nick and others before herself. She did tell us that she had a dream that she was in heaven. I think she is letting us know that she will be ok and is less scared. Well I have to go run and watch some tv with her. Her uncle is sitting with her right now and I don't want to lose any precious moment but I know so many of you that have been there for us so much wanted and needed to know what was going on. We will update soon when we can. I hope you understand. Please I ask you for your prayers that whenever the time is here that she not be in pain. Melissa
What a remarkable family. My heart goes out to them all, and my prayers,as well.
Posted by
Aunt Mary Ann |
May 28, 2009 at 8:55 AM
Cassie, I love you and wish I could come and hug you and Amber's family. You have shared her story and inspired many by your drive to help.
Hugs and Prayers,
Missy
Posted by
Missy B |
May 28, 2009 at 9:33 AM
Post a Comment