I want to thank everyone who has left a comment on the blog or on our Facebook page recently with thoughts of encouragement or prayers. We appreciate them all. It's comforting to know there are so many people that care for Ambrosia and her welfare.
Friday night I received a call from one of the nurse practitioners at Kosair telling me they needed Ambrosia to come to OMO on Saturday to get some labs taken and to see Dr. Cheerva. So on Saturday morning we got up really early to get a couple of errands out of the way before we headed to the hospital. Once there, we were put in a room and the OMO nurse came and took blood from Ambrosia for her labs. They also needed urine samples for analysis and to test for a virus. We ended up being there for a few hours as there was a hiccup with their new electronic medical records system and having to wait for Dr. Cheerva to see us.
Once Dr. Cheerva saw us we were free to go. Later that day we headed to Frankfort to visit with family members as it would probably be the last family gathering before we headed in for the high dose of chemo. We had a nice dinner and visit with our family. Somewhere along the way that night one of the nurse practitioner's from Kosair called my phone and left a message. I didn't get it until late that night as my phone never registered a missed call. Ambrosia's ANC was low and they wanted me to give her neupogen shots Saturday and Sunday. Then they wanted me to come in to OMO on Monday before her ultrasound so they could check her numbers again.
Monday came and we headed to the hospital early in the morning. I registered Ambrosia for her ultrasound and then headed to OMO registration. After registering both places I headed over to OMO. In addition to getting her CBC, they were needing more urine from her, more blood for labs, and they also swabbed her nose. We put cotton balls in her diaper to catch the urine and I was on my way to her ultrasound appointment.
I got to radiology where they do the ultrasounds and handed the receptionist our papers and then sat in the waiting room. We were there for quite awhile before someone poked their head out into the waiting room and asked if anything had been said about sedating Ambrosia for the ultrasound. I responded that there hadn't been anything mentioned but that she was NPO if they needed to sedate her. Eventually one of the ultrasound technicians came out to talk to me. The ultrasound they were doing on Ambrosia was to get a baseline look at her liver and the tumor on it. She said it's something they do a lot before a transplant that way they can do another after transplant to see if there are any changes. She said that if Ambrosia were to get really upset and cry during it, they wouldn't be able to get some of the images they needed. I told her that Ambrosia would likely cry especially because she doesn't like to be held still. She told me they were trying to get in touch with one of the doctors to get an order written for her to be sedated. Awhile later she came back and said they got the order finally but after talking to sedation there was no way they could fit her in today. We would have been waiting too long and they didn't want Ambrosia to go too long without eating.
This of course was frustrating, especially if I hadn't also had to go there for OMO, it would have been a wasted trip. The technician said they would call upstairs and let them know it needed to be rescheduled and I was sent back to OMO. Once I got to OMO, I explained the situation. I was getting ready to start feeding Ambrosia when a nurse popped her head back in the room to tell me to wait as they were trying to figure things out. They got in touch with Dr. Cheerva who talked to the main doctor down in ultrasound. He said he would personally do the ultrasound without sedation. So I had to pack ourselves back up and head back over for the ultrasound. I was beyond frustrated at this point as I didn't want to head over there only to be sent back once again. Luckily, they were able to do the ultrasound even with Ambrosia being upset. They got as many images as they could. Since we had the CT scan within the last week they could also use it to compare how much hopefully the tumors will shrink from the high dose of chemo along with the ultrasound.
After all that we had to head back over to OMO because they still needed a urine sample from Ambrosia. Of course Ambrosia hadn't gone to the bathroom because she hadn't had anything to eat since 11 pm the night before. We settled in the room and the coordinator for transplant was there to go over what will happen during our stay. She had a paper explaining visitation limits and papers with the different chemo medicine Ambrosia would be getting. She will have a calendar for me telling me exactly what will happen on each days of our stay, including when Ambrosia's stem cells will be given back to her. We are going to have to limit Braeden's visits to the hospital during this stay, especially when Ambrosia's numbers drop to zero and stay there. I don't know exactly how we will work that all out but we will figure it out!
At first they were talking about having us come in today to get things started, but the transplant coordinator ended up telling me before we left that she would contact me later Monday to let me know exactly when we would be admitted. She called last night and said we will be admitted on Thursday and chemo will start that day. We have to kind of isolate ourselves for the next couple of days as best we can so that none of us are exposed to any illnesses that might delay things.
I will be posting an event on Facebook asking that on Thursday morning at 9 am everyone that can stop for a moment and either pray for Ambrosia or think positive thoughts for the outcome of this treatment to please do so.
The next several weeks will be hard. There is no way to know how Ambrosia will react to the high dose of chemo, especially since she has tolerated everything so well up until this point. She will likely end up very sick and it will be hard to see her that way, but if this treatment works and shrinks those tumors, I can endure seeing her sick knowing the outcome could save her life.
Friday night I received a call from one of the nurse practitioners at Kosair telling me they needed Ambrosia to come to OMO on Saturday to get some labs taken and to see Dr. Cheerva. So on Saturday morning we got up really early to get a couple of errands out of the way before we headed to the hospital. Once there, we were put in a room and the OMO nurse came and took blood from Ambrosia for her labs. They also needed urine samples for analysis and to test for a virus. We ended up being there for a few hours as there was a hiccup with their new electronic medical records system and having to wait for Dr. Cheerva to see us.
Once Dr. Cheerva saw us we were free to go. Later that day we headed to Frankfort to visit with family members as it would probably be the last family gathering before we headed in for the high dose of chemo. We had a nice dinner and visit with our family. Somewhere along the way that night one of the nurse practitioner's from Kosair called my phone and left a message. I didn't get it until late that night as my phone never registered a missed call. Ambrosia's ANC was low and they wanted me to give her neupogen shots Saturday and Sunday. Then they wanted me to come in to OMO on Monday before her ultrasound so they could check her numbers again.
Monday came and we headed to the hospital early in the morning. I registered Ambrosia for her ultrasound and then headed to OMO registration. After registering both places I headed over to OMO. In addition to getting her CBC, they were needing more urine from her, more blood for labs, and they also swabbed her nose. We put cotton balls in her diaper to catch the urine and I was on my way to her ultrasound appointment.
I got to radiology where they do the ultrasounds and handed the receptionist our papers and then sat in the waiting room. We were there for quite awhile before someone poked their head out into the waiting room and asked if anything had been said about sedating Ambrosia for the ultrasound. I responded that there hadn't been anything mentioned but that she was NPO if they needed to sedate her. Eventually one of the ultrasound technicians came out to talk to me. The ultrasound they were doing on Ambrosia was to get a baseline look at her liver and the tumor on it. She said it's something they do a lot before a transplant that way they can do another after transplant to see if there are any changes. She said that if Ambrosia were to get really upset and cry during it, they wouldn't be able to get some of the images they needed. I told her that Ambrosia would likely cry especially because she doesn't like to be held still. She told me they were trying to get in touch with one of the doctors to get an order written for her to be sedated. Awhile later she came back and said they got the order finally but after talking to sedation there was no way they could fit her in today. We would have been waiting too long and they didn't want Ambrosia to go too long without eating.
This of course was frustrating, especially if I hadn't also had to go there for OMO, it would have been a wasted trip. The technician said they would call upstairs and let them know it needed to be rescheduled and I was sent back to OMO. Once I got to OMO, I explained the situation. I was getting ready to start feeding Ambrosia when a nurse popped her head back in the room to tell me to wait as they were trying to figure things out. They got in touch with Dr. Cheerva who talked to the main doctor down in ultrasound. He said he would personally do the ultrasound without sedation. So I had to pack ourselves back up and head back over for the ultrasound. I was beyond frustrated at this point as I didn't want to head over there only to be sent back once again. Luckily, they were able to do the ultrasound even with Ambrosia being upset. They got as many images as they could. Since we had the CT scan within the last week they could also use it to compare how much hopefully the tumors will shrink from the high dose of chemo along with the ultrasound.
After all that we had to head back over to OMO because they still needed a urine sample from Ambrosia. Of course Ambrosia hadn't gone to the bathroom because she hadn't had anything to eat since 11 pm the night before. We settled in the room and the coordinator for transplant was there to go over what will happen during our stay. She had a paper explaining visitation limits and papers with the different chemo medicine Ambrosia would be getting. She will have a calendar for me telling me exactly what will happen on each days of our stay, including when Ambrosia's stem cells will be given back to her. We are going to have to limit Braeden's visits to the hospital during this stay, especially when Ambrosia's numbers drop to zero and stay there. I don't know exactly how we will work that all out but we will figure it out!
At first they were talking about having us come in today to get things started, but the transplant coordinator ended up telling me before we left that she would contact me later Monday to let me know exactly when we would be admitted. She called last night and said we will be admitted on Thursday and chemo will start that day. We have to kind of isolate ourselves for the next couple of days as best we can so that none of us are exposed to any illnesses that might delay things.
I will be posting an event on Facebook asking that on Thursday morning at 9 am everyone that can stop for a moment and either pray for Ambrosia or think positive thoughts for the outcome of this treatment to please do so.
The next several weeks will be hard. There is no way to know how Ambrosia will react to the high dose of chemo, especially since she has tolerated everything so well up until this point. She will likely end up very sick and it will be hard to see her that way, but if this treatment works and shrinks those tumors, I can endure seeing her sick knowing the outcome could save her life.
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