I know a lot of people are anxiously waiting to hear about our wish trip to the Louisville Zoo this past Friday. I promise I will be writing a detailed entry about our trip. I was actually waiting for our pictures to come from the photographer before writing the entry. Just know that we had a wonderful time and got to do some cool things! It was definitely something we won't forget.
After our trip to OMO last Thursday, I noticed Ambrosia was acting less and less like herself. She is barely smiling or reacting when someone does something to try and make her smile, which is not something that has ever been a problem in the past. She is playing some but minimally and again with no smiles or laughing. Kourageous Kids came out yesterday and we were officially admitted with them even though they had been out a couple of times prior. While they were here I remarked how much I had noticed a change in her. The nurse decided to come with me to OMO for our appointment today to ask some questions about her pain management.
When we got to OMO today the nurse from Kourageous Kids was there. She asked the OMO nurse if they could put a probe on to check Ambrosia's oxygen level. Her oxygen was lower than it has been recently so she was put on some oxygen. The Kourageous Kids nurse also talked a little to Dr. Cheerva about her pain medicine and it was decided to up her medicine to twice the amount of what she had been getting. Dr. Cheerva decided it would be a good idea to get a chest x-ray while we were there to get a better understanding as to what was going on. When she listened to Ambrosia's lungs she said she was hearing very little breath sounds coming from her left lung where the tumors are.
The child psychologist had also come to the appointment today and spent the entire time I was there with me. She walked with me to get Ambrosia's chest x-ray. Ambrosia's NJ tube had also gotten clogged yesterday so it was replaced right after the chest x-ray. After all that was done we walked back to OMO. Dr. Cheerva was there looking at the chest x-ray. She called me over to look at it. She explained how the tumors were much larger now. So much so that they have pushed Ambrosia's heart over from the middle of her chest towards the right side of her chest. She showed me a comparison from the last chest x-ray to this one and it was obvious as to how much the tumors have grown.
The child psychologist stayed out to talk to Dr. Cheerva while I went back into our room and waited. Shortly thereafter the child psychologist came back in the room. She told me that she asked Dr. Cheerva if she could possibly try and figure out how much time we have left with Ambrosia. A lot of tears were shed and we talked about a lot of hard things while we waited. Dr. Cheerva came in and said that while only God knows when Ambrosia will pass, she thinks we only have a week or two left before she passes.
She explained that what she had to tell me next was hard for her to say but she needed us to know that at this stage Ambrosia will be considered DNR or Do not resuscitate. She said that it was likely Ambrosia would encounter an infection if the tumors persist and collapses one of her lungs. It would be easy for an infection to present itself. She asked if we would be comfortable only treating the fever that would accompany the infection rather than treating it with antibiotics as doing so would only delay things by hours or a day. She explained they would do everything in their power to keep Ambrosia comfortable and keep her pain under control. We no longer have to go in to OMO for anything if we don't want to. No more labs need to be drawn. We stopped a lot of her medication except for pain medicine and nausea medicine. If I feel Ambrosia needs to be assessed I can call Kourageous Kids who will send their nurse out to look at her. The nurse will then talk to Dr. Cheerva and adjustments will be made if needed to keep her pain under control.
In addition to the pain medicine, Ambrosia now is on oxygen at home to help her breathing. We were brought a machine for home and also a portable tank to bring with us as we go places. This is a new adjustment for us and new equipment to learn about but it is definitely necessary in keeping Ambrosia comfortable.
All of this has been a lot to take in. We knew our time was limited but I do not think we were prepared for the news we heard today. My posts on here and on Facebook may become even more sparse than they have been lately as we spend as much time together as a family as we can. Please keep us in your thoughts and prayers. I also ask that unless you are an oncologist you do not suggest a miracle procedure that you know of that will save Ambrosia. Her doctors are remarkable and if there was a cure for her RARE (and I stress...RARE) cancer they would not hesitate to implement it. Thank you for your respect in this matter.
After our trip to OMO last Thursday, I noticed Ambrosia was acting less and less like herself. She is barely smiling or reacting when someone does something to try and make her smile, which is not something that has ever been a problem in the past. She is playing some but minimally and again with no smiles or laughing. Kourageous Kids came out yesterday and we were officially admitted with them even though they had been out a couple of times prior. While they were here I remarked how much I had noticed a change in her. The nurse decided to come with me to OMO for our appointment today to ask some questions about her pain management.
When we got to OMO today the nurse from Kourageous Kids was there. She asked the OMO nurse if they could put a probe on to check Ambrosia's oxygen level. Her oxygen was lower than it has been recently so she was put on some oxygen. The Kourageous Kids nurse also talked a little to Dr. Cheerva about her pain medicine and it was decided to up her medicine to twice the amount of what she had been getting. Dr. Cheerva decided it would be a good idea to get a chest x-ray while we were there to get a better understanding as to what was going on. When she listened to Ambrosia's lungs she said she was hearing very little breath sounds coming from her left lung where the tumors are.
The child psychologist had also come to the appointment today and spent the entire time I was there with me. She walked with me to get Ambrosia's chest x-ray. Ambrosia's NJ tube had also gotten clogged yesterday so it was replaced right after the chest x-ray. After all that was done we walked back to OMO. Dr. Cheerva was there looking at the chest x-ray. She called me over to look at it. She explained how the tumors were much larger now. So much so that they have pushed Ambrosia's heart over from the middle of her chest towards the right side of her chest. She showed me a comparison from the last chest x-ray to this one and it was obvious as to how much the tumors have grown.
The child psychologist stayed out to talk to Dr. Cheerva while I went back into our room and waited. Shortly thereafter the child psychologist came back in the room. She told me that she asked Dr. Cheerva if she could possibly try and figure out how much time we have left with Ambrosia. A lot of tears were shed and we talked about a lot of hard things while we waited. Dr. Cheerva came in and said that while only God knows when Ambrosia will pass, she thinks we only have a week or two left before she passes.
She explained that what she had to tell me next was hard for her to say but she needed us to know that at this stage Ambrosia will be considered DNR or Do not resuscitate. She said that it was likely Ambrosia would encounter an infection if the tumors persist and collapses one of her lungs. It would be easy for an infection to present itself. She asked if we would be comfortable only treating the fever that would accompany the infection rather than treating it with antibiotics as doing so would only delay things by hours or a day. She explained they would do everything in their power to keep Ambrosia comfortable and keep her pain under control. We no longer have to go in to OMO for anything if we don't want to. No more labs need to be drawn. We stopped a lot of her medication except for pain medicine and nausea medicine. If I feel Ambrosia needs to be assessed I can call Kourageous Kids who will send their nurse out to look at her. The nurse will then talk to Dr. Cheerva and adjustments will be made if needed to keep her pain under control.
In addition to the pain medicine, Ambrosia now is on oxygen at home to help her breathing. We were brought a machine for home and also a portable tank to bring with us as we go places. This is a new adjustment for us and new equipment to learn about but it is definitely necessary in keeping Ambrosia comfortable.
All of this has been a lot to take in. We knew our time was limited but I do not think we were prepared for the news we heard today. My posts on here and on Facebook may become even more sparse than they have been lately as we spend as much time together as a family as we can. Please keep us in your thoughts and prayers. I also ask that unless you are an oncologist you do not suggest a miracle procedure that you know of that will save Ambrosia. Her doctors are remarkable and if there was a cure for her RARE (and I stress...RARE) cancer they would not hesitate to implement it. Thank you for your respect in this matter.
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