Guest guest Posted January 27, 2004 Report Share Posted January 27, 2004 audrey will continue to be in my prayers. i hope the night goes by quickly and tomorrow is a brighter, stronger day. take care, bethany mom to brennan 6, palmer & anna grace (leighs) 4 > Hi All, > > The first thing I want to say is thanks to all of you for your wonderful > caring and prayers. > > Last evening Audrey got worse so about 6PM we took her to the ER. As you > know, it is the hospital where I work, anyway, the ER Dr. was a hematologist and > was actually a little knowledgeable about Mito. Her sats were down in the > 80's, with O2 they came up to the low 90's. She has pneumonia again and isn't > moving much air. They tried 6 times to get her IV and that was 3 times by the > Dr. Then the Dr. tried 2 times to do blood gases without any luck. They called > her ped and he said to give her an injection of Rocephine and then today he > would put in a line. He let them take her home since there is so much illness > in the hospital right now and he feels she is very compromised and really > didn't want to admit her. Amie was a little nervous about it, but I called > someone to work for me and I spent the night at their house and stayed up with > Audrey all night. We are having to suction her quite frequently and her fever > keeps going up, but so far she is doing OK. Today the roads were so bad the Dr. > didn't make it in to the office but he called and had us take her in so the > nurse could give her another Rocephine injection. He has called I think 3 times > today to check on her. We will see if he will try the line tomorrow of just > do another injection. She is very weak, but she is a fighter. Please continue > to pray for her as she is differently not out of the woods yet. I am going > to try to get a nap in as I have not slept since yesterday and Amie might need > me tonight again. The nurse was there all day but she left at 6PM. > > I will try to keep you all updated daily, and again, thank you all for your > concern, prayers and love. > > Kathy, still a very worried grandma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2004 Report Share Posted January 27, 2004 audrey will continue to be in my prayers. i hope the night goes by quickly and tomorrow is a brighter, stronger day. take care, bethany mom to brennan 6, palmer & anna grace (leighs) 4 > Hi All, > > The first thing I want to say is thanks to all of you for your wonderful > caring and prayers. > > Last evening Audrey got worse so about 6PM we took her to the ER. As you > know, it is the hospital where I work, anyway, the ER Dr. was a hematologist and > was actually a little knowledgeable about Mito. Her sats were down in the > 80's, with O2 they came up to the low 90's. She has pneumonia again and isn't > moving much air. They tried 6 times to get her IV and that was 3 times by the > Dr. Then the Dr. tried 2 times to do blood gases without any luck. They called > her ped and he said to give her an injection of Rocephine and then today he > would put in a line. He let them take her home since there is so much illness > in the hospital right now and he feels she is very compromised and really > didn't want to admit her. Amie was a little nervous about it, but I called > someone to work for me and I spent the night at their house and stayed up with > Audrey all night. We are having to suction her quite frequently and her fever > keeps going up, but so far she is doing OK. Today the roads were so bad the Dr. > didn't make it in to the office but he called and had us take her in so the > nurse could give her another Rocephine injection. He has called I think 3 times > today to check on her. We will see if he will try the line tomorrow of just > do another injection. She is very weak, but she is a fighter. Please continue > to pray for her as she is differently not out of the woods yet. I am going > to try to get a nap in as I have not slept since yesterday and Amie might need > me tonight again. The nurse was there all day but she left at 6PM. > > I will try to keep you all updated daily, and again, thank you all for your > concern, prayers and love. > > Kathy, still a very worried grandma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2004 Report Share Posted January 27, 2004 audrey will continue to be in my prayers. i hope the night goes by quickly and tomorrow is a brighter, stronger day. take care, bethany mom to brennan 6, palmer & anna grace (leighs) 4 > Hi All, > > The first thing I want to say is thanks to all of you for your wonderful > caring and prayers. > > Last evening Audrey got worse so about 6PM we took her to the ER. As you > know, it is the hospital where I work, anyway, the ER Dr. was a hematologist and > was actually a little knowledgeable about Mito. Her sats were down in the > 80's, with O2 they came up to the low 90's. She has pneumonia again and isn't > moving much air. They tried 6 times to get her IV and that was 3 times by the > Dr. Then the Dr. tried 2 times to do blood gases without any luck. They called > her ped and he said to give her an injection of Rocephine and then today he > would put in a line. He let them take her home since there is so much illness > in the hospital right now and he feels she is very compromised and really > didn't want to admit her. Amie was a little nervous about it, but I called > someone to work for me and I spent the night at their house and stayed up with > Audrey all night. We are having to suction her quite frequently and her fever > keeps going up, but so far she is doing OK. Today the roads were so bad the Dr. > didn't make it in to the office but he called and had us take her in so the > nurse could give her another Rocephine injection. He has called I think 3 times > today to check on her. We will see if he will try the line tomorrow of just > do another injection. She is very weak, but she is a fighter. Please continue > to pray for her as she is differently not out of the woods yet. I am going > to try to get a nap in as I have not slept since yesterday and Amie might need > me tonight again. The nurse was there all day but she left at 6PM. > > I will try to keep you all updated daily, and again, thank you all for your > concern, prayers and love. > > Kathy, still a very worried grandma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2004 Report Share Posted February 2, 2004 Kathy, thanks for the update. Audrey has so much going on right now. I hope her infection resolves, her MRI and button change are OK, and she is home quickly. Amie must be just exhausted (you too!) Audrey continues to be in my prayers. Maggie, mom to Mamie Rose, Complex I, 1/15/93-12/23/03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2004 Report Share Posted February 2, 2004 Kathy, thanks for the update. Audrey has so much going on right now. I hope her infection resolves, her MRI and button change are OK, and she is home quickly. Amie must be just exhausted (you too!) Audrey continues to be in my prayers. Maggie, mom to Mamie Rose, Complex I, 1/15/93-12/23/03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2004 Report Share Posted February 2, 2004 Kathy, thanks for the update. Audrey has so much going on right now. I hope her infection resolves, her MRI and button change are OK, and she is home quickly. Amie must be just exhausted (you too!) Audrey continues to be in my prayers. Maggie, mom to Mamie Rose, Complex I, 1/15/93-12/23/03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2004 Report Share Posted February 3, 2004 Just to let you know I will say an extra prayer for Audrey tonight. I think she has touched the hearts of a lot of people who have never got to meet her. She sounds like such a sweet little girl. I hate to hear that such a precious child is not feeling well. Keep us updated. Best of wishes. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2004 Report Share Posted February 3, 2004 Praying that Audrey gets well soon and is able to come home. Geri-Anne and Wyatt, Complex I- -- In Mito , Dklboone@a... wrote: > Hi all, > > I am so sorry I haven't written in a few days, but much has been going on. > > Tuesday afternoon we took Audrey to the docs for another injection of > Rocephine but the time we got there she was much worse again. She was very weak and > her lungs sounded like s--- again, so the doc decided she should go to St. > Louis, but we could take her by car. Well, while he was discussing this she > stopped breathing! He got her back pretty quick with some stimulation and then > they just scooped her up and ran across the parking lot to the ER. We were no > longer going to take her in our car, she was going by ambulance. While they > started working or her right away, she had several little seizures, Her doc > finally got her IV in and was also able to draw blood gases and labs thru a > femoral site. They were literally seconds away from intubating her. Finally they > get her stabilized and Cardinal Glennon Children's Hosp in St. Louis sent a > team down for her in one of their ambulances. She spent the night in the PICU in > St. Louis. The test results came back positive for RSV and also pneumonia in > both lungs. > > Wednesday morning she was perking up so about noon they decided she could be > moved to TCU. I suggested to Amie that since Audrey was up there and her > Neuro was going to see her, maybe they could get another MRI done since she hadn't > had one in over a year. All agreed to that so they were going to do that > Thursday, Amie also asked since Audrey was going to be sedated for the MRI could > they just change out her G-button also. It was decided that since she was > doing so well, that if she continued the plan would be to do this Thursday around > noon. Well, Thursday morning came and a scheduling conflict came up and they > were not going to be able to do the MRI or the button change. The doctor > also said she was doing so well that she could probably go home Thursday evening > and come back next week for the MRI and button as an out patient. Amie was > upset because she didn't think Audrey was ready to be released. By afternoon, > around 3, Audrey started having trouble again and couldn't keep her sats up. > By last night she was back on O2 using a mask. Her lungs sound clear, but they > think she is just wearing out. > > I came home last night to because I have to go to work tonight so I had to > get a good nights sleep, (HAHA< what ever that means). I talked to Amie this > morning and she said the plan is to do the MRI and button today. Audrey is > still on O2 by mask and her fever still keeps going up. Oh yeah, and the Neuro > decided to take her off the regular Tegretol and put her on long acting, only > twice a day. Amie said fine but she wanted to make sure that was gong to work > before bringing Audrey home. > > Audrey has stolen the hearts of everyone that has come in contact with her > once again. She is such a sweetie and so pleasant, even when she doesn't feel > good. > > Thank you all for your wonderful prayers and concerns. I will try to > continue to keep you all updated. Hopefully Audrey will get through this yet another > crisis soon and be home with us once again. You are all very dear to Amie > and I both. Amie said to tell you all thank you and even though she doesn't get > on line very much she thinks of you all often. > > You are all Great, > Kathy, grandma to Audrey, 29 mos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2004 Report Share Posted February 27, 2004 kathy, thank you for the update. please know that you all remain in our prayers. take care, bethany mom to brennan 7, palmer & anna grace (leighs) 4 > Hello once again, > > I have been scanning all of the posts but have not had time to respond as I > am still spending as much time as I can with Amie and Audrey. > > Audrey is still up and down. Her fever has been down for a couple of days > now but she started back with the diarrhea. So, back on pedialyte for at least > 12 hours after the diarrhea stops. She still manages to give us a few weak > smiles everyday and we cherish every one of them. This past Sunday, a nurse, > Darcy, from Cardinal Glennon Children's Hospital where Audrey has been a patient > more times than I want to count came down to Amie's and took some pictures of > Audrey, the other kids and Amie and Doyle. She does all of her work in black > and white and she does this as a free thing for children that are terminal > (how I hate that word). Anyway, we should be getting the proofs soon and when > we get the ones we get to keep I am looking forward to posting for all to see. > > I have so enjoyed seeing the pictures of all of your beautiful children. > They help to brighten my day. > > For now, Audrey is holding on and continues to amaze the doctors. I really > don't think when they sent her home from the hospital this last time that she > would last more than a week. Even the hospice nurse said she was amazed. She > is a very strong little girl like her mommy. Amie is hanging in there as well > and she amazes me at her strength and grace as she faces this horrible demon. > > Please know you are all thought of daily, I just don't have the energy at the > end of the day to answer the emails as I should. One day I hope to help you > all as you have helped us. You are an amazing group of people and you have my > greatest respect. > > Thoughtfully, > Kathy, grandma to Audrey, 30 mos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2004 Report Share Posted February 27, 2004 kathy, thank you for the update. please know that you all remain in our prayers. take care, bethany mom to brennan 7, palmer & anna grace (leighs) 4 > Hello once again, > > I have been scanning all of the posts but have not had time to respond as I > am still spending as much time as I can with Amie and Audrey. > > Audrey is still up and down. Her fever has been down for a couple of days > now but she started back with the diarrhea. So, back on pedialyte for at least > 12 hours after the diarrhea stops. She still manages to give us a few weak > smiles everyday and we cherish every one of them. This past Sunday, a nurse, > Darcy, from Cardinal Glennon Children's Hospital where Audrey has been a patient > more times than I want to count came down to Amie's and took some pictures of > Audrey, the other kids and Amie and Doyle. She does all of her work in black > and white and she does this as a free thing for children that are terminal > (how I hate that word). Anyway, we should be getting the proofs soon and when > we get the ones we get to keep I am looking forward to posting for all to see. > > I have so enjoyed seeing the pictures of all of your beautiful children. > They help to brighten my day. > > For now, Audrey is holding on and continues to amaze the doctors. I really > don't think when they sent her home from the hospital this last time that she > would last more than a week. Even the hospice nurse said she was amazed. She > is a very strong little girl like her mommy. Amie is hanging in there as well > and she amazes me at her strength and grace as she faces this horrible demon. > > Please know you are all thought of daily, I just don't have the energy at the > end of the day to answer the emails as I should. One day I hope to help you > all as you have helped us. You are an amazing group of people and you have my > greatest respect. > > Thoughtfully, > Kathy, grandma to Audrey, 30 mos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2004 Report Share Posted February 27, 2004 kathy, thank you for the update. please know that you all remain in our prayers. take care, bethany mom to brennan 7, palmer & anna grace (leighs) 4 > Hello once again, > > I have been scanning all of the posts but have not had time to respond as I > am still spending as much time as I can with Amie and Audrey. > > Audrey is still up and down. Her fever has been down for a couple of days > now but she started back with the diarrhea. So, back on pedialyte for at least > 12 hours after the diarrhea stops. She still manages to give us a few weak > smiles everyday and we cherish every one of them. This past Sunday, a nurse, > Darcy, from Cardinal Glennon Children's Hospital where Audrey has been a patient > more times than I want to count came down to Amie's and took some pictures of > Audrey, the other kids and Amie and Doyle. She does all of her work in black > and white and she does this as a free thing for children that are terminal > (how I hate that word). Anyway, we should be getting the proofs soon and when > we get the ones we get to keep I am looking forward to posting for all to see. > > I have so enjoyed seeing the pictures of all of your beautiful children. > They help to brighten my day. > > For now, Audrey is holding on and continues to amaze the doctors. I really > don't think when they sent her home from the hospital this last time that she > would last more than a week. Even the hospice nurse said she was amazed. She > is a very strong little girl like her mommy. Amie is hanging in there as well > and she amazes me at her strength and grace as she faces this horrible demon. > > Please know you are all thought of daily, I just don't have the energy at the > end of the day to answer the emails as I should. One day I hope to help you > all as you have helped us. You are an amazing group of people and you have my > greatest respect. > > Thoughtfully, > Kathy, grandma to Audrey, 30 mos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2004 Report Share Posted February 27, 2004 Dear Kathy, I just want to say how sorry I am that you all are going through this. My mother has told me (more than once) how much harder it is to for a grandparent to watch a grandchild suffer. Not only does their heart break for the grandchild, but for their child as well. I know where Amie gets her strength and grace. That comes through clearly in your posts. You are a treasure. Love, mary b Connor's mom - 10 years old - Leigh's/COX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2004 Report Share Posted February 27, 2004 Dear Kathy, I just want to say how sorry I am that you all are going through this. My mother has told me (more than once) how much harder it is to for a grandparent to watch a grandchild suffer. Not only does their heart break for the grandchild, but for their child as well. I know where Amie gets her strength and grace. That comes through clearly in your posts. You are a treasure. Love, mary b Connor's mom - 10 years old - Leigh's/COX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2004 Report Share Posted February 28, 2004 Please know you are all thought of daily, I just don't have the energy at the end of the day to answer the emails as I should. One day I hope to help you all as you have helped us. You are an amazing group of people and you have my greatest respect. Kathy, The feeling is very mutual. I continue to keep Audrey and her family (including you!) in my prayers. I hope for the best, and pray for peace of mind. Hang in there! e, Chelsea's mom(nonspecific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2004 Report Share Posted February 28, 2004 Please know you are all thought of daily, I just don't have the energy at the end of the day to answer the emails as I should. One day I hope to help you all as you have helped us. You are an amazing group of people and you have my greatest respect. Kathy, The feeling is very mutual. I continue to keep Audrey and her family (including you!) in my prayers. I hope for the best, and pray for peace of mind. Hang in there! e, Chelsea's mom(nonspecific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2004 Report Share Posted February 28, 2004 Please know you are all thought of daily, I just don't have the energy at the end of the day to answer the emails as I should. One day I hope to help you all as you have helped us. You are an amazing group of people and you have my greatest respect. Kathy, The feeling is very mutual. I continue to keep Audrey and her family (including you!) in my prayers. I hope for the best, and pray for peace of mind. Hang in there! e, Chelsea's mom(nonspecific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2004 Report Share Posted February 29, 2004 Kathy, There are so many times that I start to respond to your e- mails and I just can't. I get such a lump in my throat everytime I see Audrey's name pop up. Your strength and never ending commitment to Amie and Audrey is amazing. You are such an inspiration to us all. I am always thinking of you and saying a prayer for all of you. Geri-Anne and Wyatt, Complex I -- In Mito , Dklboone@a... wrote: > Hello once again, > > I have been scanning all of the posts but have not had time to respond as I > am still spending as much time as I can with Amie and Audrey. > > Audrey is still up and down. Her fever has been down for a couple of days > now but she started back with the diarrhea. So, back on pedialyte for at least > 12 hours after the diarrhea stops. She still manages to give us a few weak > smiles everyday and we cherish every one of them. This past Sunday, a nurse, > Darcy, from Cardinal Glennon Children's Hospital where Audrey has been a patient > more times than I want to count came down to Amie's and took some pictures of > Audrey, the other kids and Amie and Doyle. She does all of her work in black > and white and she does this as a free thing for children that are terminal > (how I hate that word). Anyway, we should be getting the proofs soon and when > we get the ones we get to keep I am looking forward to posting for all to see. > > I have so enjoyed seeing the pictures of all of your beautiful children. > They help to brighten my day. > > For now, Audrey is holding on and continues to amaze the doctors. I really > don't think when they sent her home from the hospital this last time that she > would last more than a week. Even the hospice nurse said she was amazed. She > is a very strong little girl like her mommy. Amie is hanging in there as well > and she amazes me at her strength and grace as she faces this horrible demon. > > Please know you are all thought of daily, I just don't have the energy at the > end of the day to answer the emails as I should. One day I hope to help you > all as you have helped us. You are an amazing group of people and you have my > greatest respect. > > Thoughtfully, > Kathy, grandma to Audrey, 30 mos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2004 Report Share Posted February 29, 2004 Kathy, There are so many times that I start to respond to your e- mails and I just can't. I get such a lump in my throat everytime I see Audrey's name pop up. Your strength and never ending commitment to Amie and Audrey is amazing. You are such an inspiration to us all. I am always thinking of you and saying a prayer for all of you. Geri-Anne and Wyatt, Complex I -- In Mito , Dklboone@a... wrote: > Hello once again, > > I have been scanning all of the posts but have not had time to respond as I > am still spending as much time as I can with Amie and Audrey. > > Audrey is still up and down. Her fever has been down for a couple of days > now but she started back with the diarrhea. So, back on pedialyte for at least > 12 hours after the diarrhea stops. She still manages to give us a few weak > smiles everyday and we cherish every one of them. This past Sunday, a nurse, > Darcy, from Cardinal Glennon Children's Hospital where Audrey has been a patient > more times than I want to count came down to Amie's and took some pictures of > Audrey, the other kids and Amie and Doyle. She does all of her work in black > and white and she does this as a free thing for children that are terminal > (how I hate that word). Anyway, we should be getting the proofs soon and when > we get the ones we get to keep I am looking forward to posting for all to see. > > I have so enjoyed seeing the pictures of all of your beautiful children. > They help to brighten my day. > > For now, Audrey is holding on and continues to amaze the doctors. I really > don't think when they sent her home from the hospital this last time that she > would last more than a week. Even the hospice nurse said she was amazed. She > is a very strong little girl like her mommy. Amie is hanging in there as well > and she amazes me at her strength and grace as she faces this horrible demon. > > Please know you are all thought of daily, I just don't have the energy at the > end of the day to answer the emails as I should. One day I hope to help you > all as you have helped us. You are an amazing group of people and you have my > greatest respect. > > Thoughtfully, > Kathy, grandma to Audrey, 30 mos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2004 Report Share Posted February 29, 2004 Kathy, There are so many times that I start to respond to your e- mails and I just can't. I get such a lump in my throat everytime I see Audrey's name pop up. Your strength and never ending commitment to Amie and Audrey is amazing. You are such an inspiration to us all. I am always thinking of you and saying a prayer for all of you. Geri-Anne and Wyatt, Complex I -- In Mito , Dklboone@a... wrote: > Hello once again, > > I have been scanning all of the posts but have not had time to respond as I > am still spending as much time as I can with Amie and Audrey. > > Audrey is still up and down. Her fever has been down for a couple of days > now but she started back with the diarrhea. So, back on pedialyte for at least > 12 hours after the diarrhea stops. She still manages to give us a few weak > smiles everyday and we cherish every one of them. This past Sunday, a nurse, > Darcy, from Cardinal Glennon Children's Hospital where Audrey has been a patient > more times than I want to count came down to Amie's and took some pictures of > Audrey, the other kids and Amie and Doyle. She does all of her work in black > and white and she does this as a free thing for children that are terminal > (how I hate that word). Anyway, we should be getting the proofs soon and when > we get the ones we get to keep I am looking forward to posting for all to see. > > I have so enjoyed seeing the pictures of all of your beautiful children. > They help to brighten my day. > > For now, Audrey is holding on and continues to amaze the doctors. I really > don't think when they sent her home from the hospital this last time that she > would last more than a week. Even the hospice nurse said she was amazed. She > is a very strong little girl like her mommy. Amie is hanging in there as well > and she amazes me at her strength and grace as she faces this horrible demon. > > Please know you are all thought of daily, I just don't have the energy at the > end of the day to answer the emails as I should. One day I hope to help you > all as you have helped us. You are an amazing group of people and you have my > greatest respect. > > Thoughtfully, > Kathy, grandma to Audrey, 30 mos Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.