Thursday of last week we went back to OMO not sure if we were going to be able to start chemo or not. We got there and I made sure the nurses knew that if we were starting chemo I needed to know as soon as possible because I would need to be able to leave to get Braeden or make arrangements for someone else to be able to. They got things moving pretty quickly and the nurse practitioner came to see Ambrosia. Unfortunately, Ambrosia still tested positive for the metapneumo virus and they decided to give her some IV medicine to help her fight it off. They decided to not have us come back to OMO until Monday. At which point we would probably be starting chemo if Ambrosia looked like she had improved.
On Monday, we got settled in to OMO again and I emphasized how I needed to know things as soon as they could tell me. Ambrosia's cough had pretty much stopped and her nose wasn't as runny either unless she cried. The nurse practitioner and Dr. Lucas came in to see Ambrosia. Dr. Lucas decided she looked good enough to start chemo that day but she also needed blood first. Luckily, everything was done in time to be able to get Braeden from school. While we were there blood cultures were taken from Ambrosia's line because it had been 2 weeks since they found her other infection and they wanted to make sure she was still clear. We went home not thinking much of it and ready to return on Tuesday for more chemo.
Around 2:30 am Tuesday morning, Ambrosia woke up screaming. This is not necessarily unusual since she is teething but I had given her pain medication before bed and it wasn't quite time to give her more. I knew something wasn't right then but there wasn't anything I could do except give more pain medicine when it was time since I knew we would be at OMO in a few short hours. We made it to OMO and the nurse was told to take blood cultures again. She was confused as to why because some had just been taken. That's when I was told that her blood cultures from the day before had come back positive for an infection and we were going to have to be admitted.
A short while later the nurse practitioner came to see us. She said she was so glad that we were already scheduled to come in that day because the infection that Ambrosia tested positive for was one that could turn bad very quickly and even be fatal in some cases. The microbial team that's in charge of seeing if things grow from the blood cultures had called her phone in the middle of the night and left a message instead of calling the attending on call and talking to a live person. They had already been scolded and told under no circumstances was something like that to happen again. They started antibiotics immediately and we settled in at OMO to wait for a room to open up on 7West.
While we waited, Ambrosia was breathing particularly fast and she also was not calming down again and was upset. The nurse practitioner ordered some pain medicine for her and they also started her on some oxygen as it looked like she was struggling some. They ordered for her to have a chest x-ray as well.
After some time we were able to head over to 7West. Once over there and some time had passed the x-ray team came and did the chest x-ray. The nurse practitioner came by to tell me that the chest x-ray showed some fluid in her lung. Ambrosia was still on oxygen and they were monitoring her heart and how much oxygen she was getting as well.
The next day, Dr. Lucas came to see Ambrosia. He told me the tumors that were clustered on her left lung were substantial and gestured with his hands the size they were. After delivering that news he asked what our wishes were with concerns to Ambrosia and how they should proceed should things get bad. Did we want them to do everything they could, meaning intubate and be transferred to the PICU and be hooked up to a lot of things or did we not want to see her having to be hooked up that way. Those weren't his exact words, he said them a lot better than I am explaining it but it wasn't something I was expecting to hear. We know Ambrosia's cancer is not curable at this point in time, but everyone is still trying to do everything they can to continue to find ways to treat her. It was hard to hear and definitely hard to think about. He explained we could always have them do everything in their power first to sustain her life and then reassess later if we thought it was doing more harm than good. He said he would let Wes and I discuss it and let them know what our decision was.
Our nurse came in awhile later and expounded upon what Dr. Lucas had said. She explained at any point we could change our minds and things would happen in a snap. No paperwork would need to be signed. The doctors would follow our wishes no matter what we decide, even if we changed our minds. That was good to hear. Wes and I briefly discussed what we wanted to have happen. It definitely is not an easy discussion to have.
Today, Dr. Lucas came in early to see Ambrosia. He told me that her cultures were still coming back positive even though she'd been having antibiotics. He thought it was best to have the line pulled and have a peripheral IV put in her hand so we could move forward with chemo on Friday. Ambrosia was doing better and he said she no longer needed to be on oxygen.
Awhile later the nurse practitioner came in and we had a brief discussion. She explained what Dr. Lucas had already told me. She said starting the chemo tomorrow could lead to further complications because they were starting it while Ambrosia already had an infection. The chemo would lower her numbers and her ability to be able to fight off more infections, which she might be prone to because of the chemo and numbers being low. However, they are anxious to start because Ambrosia's disease is progressing. There of course is no guarantee the chemo will have any affect on her tumors but it is something worth trying. She asked me if Wes and I had a chance to talk about what Dr. Lucas had talked to me about yesterday. I told her we had briefly and I decided what to tell her then. We are going to move forward with them doing whatever they can to sustain life first and then reassess later if we feel Ambrosia is not getting better, then we will make the decision to let go. They want to make sure they know our feelings on the matter since giving this chemo with the infection is risky because of the reasons I have already said.
Awhile later our nurse came and said that Ambrosia would be having surgery sometime in the afternoon whenever they could work her in. She mentioned that the nurse practitioner had talked about having a team come talk to us about our options for Ambrosia. We went down to get Ambrosia's NJ tube placed before her surgery. While we were down there, her nurse got a call that Ambrosia's cultures from today had already come back positive again so it was good that we were going to get her line removed.
The child psychologist came to see me before Ambrosia went to surgery. She wanted to talk some more about our decision to see where I was at emotionally. She explained there is a Hearts and Hand palliative care team here at the hospital that can start to be involved with our care. They will get to know us, Ambrosia and Braeden and go over every option we have and be a support system for us. She also said they might mention Hosparus for when we are outpatient. She said it might be a good idea for Hosparus to get involved now so they also can get to know our family and build a relationship with us. This will be especially good for Braeden as he can get to know them and if Ambrosia is taken from us they will be able to provide services for him and us for at least a year after. This has been a big concern for me as I don't know how a now 6 year old would process his sister leaving us. It will be hard enough for me to comprehend, let alone him. The team from the hospital should be getting together with us soon.
This afternoon Ambrosia was taken up for her surgery. It was fairly quick as all that was being done was her line being taken out and an IV put in. Everything went great as expected. Tomorrow they plan to start chemo and again on Saturday. Then on Sunday, they will be starting the experimental chemo. We will of course be kept inpatient during this process as Ambrosia still has her infection and they want to keep a close eye on her. Before we are discharged Ambrosia will have to have another surgery to place a new broviac line. For now they are letting her body have a chance to get rid of the infection as they were able to pinpoint even further the specifics of her infection. They started a new antibiotic today to help rid it from her blood stream.
As always keep Ambrosia and all of her family in your prayers. We appreciate everyone's support and prayers no matter how big or small. I know more and more people are hearing about her story and I am finding out new connections to her everyday from people we don't even know. Continue to share this blog and her Facebook (Angels for Ambrosia) page freely. There can never be enough people praying for her.
On Monday, we got settled in to OMO again and I emphasized how I needed to know things as soon as they could tell me. Ambrosia's cough had pretty much stopped and her nose wasn't as runny either unless she cried. The nurse practitioner and Dr. Lucas came in to see Ambrosia. Dr. Lucas decided she looked good enough to start chemo that day but she also needed blood first. Luckily, everything was done in time to be able to get Braeden from school. While we were there blood cultures were taken from Ambrosia's line because it had been 2 weeks since they found her other infection and they wanted to make sure she was still clear. We went home not thinking much of it and ready to return on Tuesday for more chemo.
Around 2:30 am Tuesday morning, Ambrosia woke up screaming. This is not necessarily unusual since she is teething but I had given her pain medication before bed and it wasn't quite time to give her more. I knew something wasn't right then but there wasn't anything I could do except give more pain medicine when it was time since I knew we would be at OMO in a few short hours. We made it to OMO and the nurse was told to take blood cultures again. She was confused as to why because some had just been taken. That's when I was told that her blood cultures from the day before had come back positive for an infection and we were going to have to be admitted.
A short while later the nurse practitioner came to see us. She said she was so glad that we were already scheduled to come in that day because the infection that Ambrosia tested positive for was one that could turn bad very quickly and even be fatal in some cases. The microbial team that's in charge of seeing if things grow from the blood cultures had called her phone in the middle of the night and left a message instead of calling the attending on call and talking to a live person. They had already been scolded and told under no circumstances was something like that to happen again. They started antibiotics immediately and we settled in at OMO to wait for a room to open up on 7West.
While we waited, Ambrosia was breathing particularly fast and she also was not calming down again and was upset. The nurse practitioner ordered some pain medicine for her and they also started her on some oxygen as it looked like she was struggling some. They ordered for her to have a chest x-ray as well.
After some time we were able to head over to 7West. Once over there and some time had passed the x-ray team came and did the chest x-ray. The nurse practitioner came by to tell me that the chest x-ray showed some fluid in her lung. Ambrosia was still on oxygen and they were monitoring her heart and how much oxygen she was getting as well.
The next day, Dr. Lucas came to see Ambrosia. He told me the tumors that were clustered on her left lung were substantial and gestured with his hands the size they were. After delivering that news he asked what our wishes were with concerns to Ambrosia and how they should proceed should things get bad. Did we want them to do everything they could, meaning intubate and be transferred to the PICU and be hooked up to a lot of things or did we not want to see her having to be hooked up that way. Those weren't his exact words, he said them a lot better than I am explaining it but it wasn't something I was expecting to hear. We know Ambrosia's cancer is not curable at this point in time, but everyone is still trying to do everything they can to continue to find ways to treat her. It was hard to hear and definitely hard to think about. He explained we could always have them do everything in their power first to sustain her life and then reassess later if we thought it was doing more harm than good. He said he would let Wes and I discuss it and let them know what our decision was.
Our nurse came in awhile later and expounded upon what Dr. Lucas had said. She explained at any point we could change our minds and things would happen in a snap. No paperwork would need to be signed. The doctors would follow our wishes no matter what we decide, even if we changed our minds. That was good to hear. Wes and I briefly discussed what we wanted to have happen. It definitely is not an easy discussion to have.
Today, Dr. Lucas came in early to see Ambrosia. He told me that her cultures were still coming back positive even though she'd been having antibiotics. He thought it was best to have the line pulled and have a peripheral IV put in her hand so we could move forward with chemo on Friday. Ambrosia was doing better and he said she no longer needed to be on oxygen.
Awhile later the nurse practitioner came in and we had a brief discussion. She explained what Dr. Lucas had already told me. She said starting the chemo tomorrow could lead to further complications because they were starting it while Ambrosia already had an infection. The chemo would lower her numbers and her ability to be able to fight off more infections, which she might be prone to because of the chemo and numbers being low. However, they are anxious to start because Ambrosia's disease is progressing. There of course is no guarantee the chemo will have any affect on her tumors but it is something worth trying. She asked me if Wes and I had a chance to talk about what Dr. Lucas had talked to me about yesterday. I told her we had briefly and I decided what to tell her then. We are going to move forward with them doing whatever they can to sustain life first and then reassess later if we feel Ambrosia is not getting better, then we will make the decision to let go. They want to make sure they know our feelings on the matter since giving this chemo with the infection is risky because of the reasons I have already said.
Awhile later our nurse came and said that Ambrosia would be having surgery sometime in the afternoon whenever they could work her in. She mentioned that the nurse practitioner had talked about having a team come talk to us about our options for Ambrosia. We went down to get Ambrosia's NJ tube placed before her surgery. While we were down there, her nurse got a call that Ambrosia's cultures from today had already come back positive again so it was good that we were going to get her line removed.
The child psychologist came to see me before Ambrosia went to surgery. She wanted to talk some more about our decision to see where I was at emotionally. She explained there is a Hearts and Hand palliative care team here at the hospital that can start to be involved with our care. They will get to know us, Ambrosia and Braeden and go over every option we have and be a support system for us. She also said they might mention Hosparus for when we are outpatient. She said it might be a good idea for Hosparus to get involved now so they also can get to know our family and build a relationship with us. This will be especially good for Braeden as he can get to know them and if Ambrosia is taken from us they will be able to provide services for him and us for at least a year after. This has been a big concern for me as I don't know how a now 6 year old would process his sister leaving us. It will be hard enough for me to comprehend, let alone him. The team from the hospital should be getting together with us soon.
This afternoon Ambrosia was taken up for her surgery. It was fairly quick as all that was being done was her line being taken out and an IV put in. Everything went great as expected. Tomorrow they plan to start chemo and again on Saturday. Then on Sunday, they will be starting the experimental chemo. We will of course be kept inpatient during this process as Ambrosia still has her infection and they want to keep a close eye on her. Before we are discharged Ambrosia will have to have another surgery to place a new broviac line. For now they are letting her body have a chance to get rid of the infection as they were able to pinpoint even further the specifics of her infection. They started a new antibiotic today to help rid it from her blood stream.
As always keep Ambrosia and all of her family in your prayers. We appreciate everyone's support and prayers no matter how big or small. I know more and more people are hearing about her story and I am finding out new connections to her everyday from people we don't even know. Continue to share this blog and her Facebook (Angels for Ambrosia) page freely. There can never be enough people praying for her.
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