Tomorrow Ambrosia will be getting her stem cells transplanted back to her. It's supposed to happen at around 10 am. It usually only takes about a half an hour for them to give them back to her. It will be like when she's gotten platelets. During this time there will be a nurse and a nurse practitioner in the room monitoring for any reactions Ambrosia might have while receiving her stem cells. They don't anticipate any problems since these are from her and not a donor which is riskier.This week has been pretty good. Ambrosia hasn't been quite as fussy as she was over the weekend and has been sleeping better during the night. We've had a speech therapist come to the room twice now to help work with Ambrosia to try baby foods. Ambrosia actually ate some puree bananas without making any faces and she also ate some puree mango today. I was pretty impressed that she is more willing to try things now even after the high dose of chemo. Physical therapy has also come twice this week to just work with Ambrosia. They don't feel she is behind but they still want to come and work with her to be able to observe her in case she does fall behind at some point.
Yesterday the art therapist came to the room and asked if we wanted to try to see if Ambrosia might want to fingerpaint or color. I hadn't tried either with her and figured we might as well. She brought us some paint, markers, crayons, paint brushes, paper, and even window markers! We have a lot to help pass the time while we are here. I plan to try and see if Ambrosia would like to get a little messy and fingerpaint this afternoon after her nap.
When the art therapist was visiting us she told me about a mom's dinner they have the 4th Wednesday of every month for mothers of cancer patients. I had never been to one as our admissions have never fallen at the end of the month. Wes and Braeden were coming to the hospital after school to visit and there was also a Sib Stars meeting for Braeden to go to. I took Braeden to his Sib Stars group and I went to the mom's dinner while Wes stayed in the room with Ambrosia. I was a little late as I was visiting with Wes and Braeden first before going so I missed every one else's introductions and the intro about their kids and what kind of cancer they are fighting. I told them about Ambrosia and where we are in our journey to get her cured. There were two other mom's there who are also here for transplant. We will be seeing a lot of each other during the weeks we are here. It was nice to get out of the room for a little bit and there was also a massage therapist there of which I took full advantage! I was ready for a nap after that massage.
Ambrosia has been getting antibiotics for a few days as one of the blood cultures they took for her showed some bacteria growing. I haven't been told yet if they have identified what it is but she has been getting vancomycin which is one they give automatically until they know what they are dealing with. She has not run a fever since this past weekend She has been having some issues with gagging. They had started her feeds back up but started them very slowly. They upped them yesterday only by 2 mls and since she has been gagging a lot. Dr. Cheerva checked in on her awhile ago and said they will go ahead and drop her back down by 2 mls to see if that helps. She said if that doesn't work and she is still gagging they will go ahead and stop her feeds. She is still breastfeeding fine and they have started her on TPN , which provides her with the nutrients she needs.
I need some prayers and thoughts for Braeden as I can tell this time away is taking some toll on him. He doesn't understand why he's not allowed to spend the night up here with me which he has done in the past. It is against the rules this time around. He has been a little more sensitive then usual when he has been up here to visit and it's time to go home. That of course has been hard on me to see as well. Keep my husband also in your thoughts and prayers. He has been doing a wonderful job of taking care of Braeden and the house while I've been gone but I know it's been hard on him as well.
Dr. Cheerva said that we will do a CT scan in about 3 to 4 weeks after the start of her chemo last week. She said that we don't want to do it too early as we don't want to see that the tumors haven't shrunk. We have to give the chemo plenty of time to do what it is supposed to do. We still have a long road ahead of us and I have been warned that Ambrosia will get really sick, but we will make it through.
Yesterday the art therapist came to the room and asked if we wanted to try to see if Ambrosia might want to fingerpaint or color. I hadn't tried either with her and figured we might as well. She brought us some paint, markers, crayons, paint brushes, paper, and even window markers! We have a lot to help pass the time while we are here. I plan to try and see if Ambrosia would like to get a little messy and fingerpaint this afternoon after her nap.
When the art therapist was visiting us she told me about a mom's dinner they have the 4th Wednesday of every month for mothers of cancer patients. I had never been to one as our admissions have never fallen at the end of the month. Wes and Braeden were coming to the hospital after school to visit and there was also a Sib Stars meeting for Braeden to go to. I took Braeden to his Sib Stars group and I went to the mom's dinner while Wes stayed in the room with Ambrosia. I was a little late as I was visiting with Wes and Braeden first before going so I missed every one else's introductions and the intro about their kids and what kind of cancer they are fighting. I told them about Ambrosia and where we are in our journey to get her cured. There were two other mom's there who are also here for transplant. We will be seeing a lot of each other during the weeks we are here. It was nice to get out of the room for a little bit and there was also a massage therapist there of which I took full advantage! I was ready for a nap after that massage.
Ambrosia has been getting antibiotics for a few days as one of the blood cultures they took for her showed some bacteria growing. I haven't been told yet if they have identified what it is but she has been getting vancomycin which is one they give automatically until they know what they are dealing with. She has not run a fever since this past weekend She has been having some issues with gagging. They had started her feeds back up but started them very slowly. They upped them yesterday only by 2 mls and since she has been gagging a lot. Dr. Cheerva checked in on her awhile ago and said they will go ahead and drop her back down by 2 mls to see if that helps. She said if that doesn't work and she is still gagging they will go ahead and stop her feeds. She is still breastfeeding fine and they have started her on TPN , which provides her with the nutrients she needs.
I need some prayers and thoughts for Braeden as I can tell this time away is taking some toll on him. He doesn't understand why he's not allowed to spend the night up here with me which he has done in the past. It is against the rules this time around. He has been a little more sensitive then usual when he has been up here to visit and it's time to go home. That of course has been hard on me to see as well. Keep my husband also in your thoughts and prayers. He has been doing a wonderful job of taking care of Braeden and the house while I've been gone but I know it's been hard on him as well.
Dr. Cheerva said that we will do a CT scan in about 3 to 4 weeks after the start of her chemo last week. She said that we don't want to do it too early as we don't want to see that the tumors haven't shrunk. We have to give the chemo plenty of time to do what it is supposed to do. We still have a long road ahead of us and I have been warned that Ambrosia will get really sick, but we will make it through.
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