Haylie update - Sept 14
I have to be honest, today was really rough. I’ve held off writing this post until my emotions settled down some so I could think more clearly. I have to say, I have learned several important lessons today that can apply to a lot of other areas in my life and I’m hoping you can apply them to yours as well.
First - update on Haylie. She had a spinal tap with a chemo injection scheduled for 8:15am. Her levels have started dropping significantly and unfortunately, she did not make the blood count levels required for the spinal tap first thing this morning. She required a platelet transfusion before they would be able to begin. The blood and platelet supply is very low right now, so they did not have any B- platelets available. She had a transfusion of A- which was fine. I had been told by doctors that platelets that were not an exact match were fine because they take all the proteins out so your body does not react. I was told that Haylie could only have B- blood transfusions because of the many transfusions she would require due to her leukemia. Doctors told me she could not receive O-(the universal donor) except in an emergency, because her body would build antibodies to the blood. I know this because I asked several times since I am also O- and wanted to donate for her. Ok, flash back to today. Haylie’s hemoglobin was at 6.8 so she also required a blood transfusion on top of the platelet transfusion. I asked 2 separate nurses if they had B- blood available for her. Both assured me yes.
After Haylie woke up in recovery and was super hungry (it was after 1:00 at this time because we had to wait so long for the platelets to arrive for her first transfusion before the spinal tap. She hadn’t had anything to eat or drink since 8:30 the night before so I ran to the vending machine to get a bag of chips for her. When I returned I was shocked to see O- blood hooked up getting ready for the transfusion. I stopped the nurse and said, you said she was getting B-! The nurse said yes again, and I showed her that it was O- not B- She told me it was the same thing. I was a little shocked after having been told only B- could be used for her. The doctor was called back and she assured me it was fine and they didn’t want to waste the O- blood. This is a tough spot to be in as a parent. After being told nothing but B- would work for her, to being told it was fine and we are going to transfuse it now was a little scary. I am the only voice for my child when at the hospital and it’s my job as a mom to make sure her best interests are at hand. I am learning so much about cancer and blood but there is still so much that I don’t know. We depend on the doctors and nurses for the correct information and when we are told conflicting information it worries me as a parent. I realize sometimes medical teams can make mistakes too or information can be miscommunicated. I have to say the hospital has been great and our doctor is really awesome. We had up to 4 doctors (intern, resident, attending, fellow) and many nurses each day so I can see where information can be misunderstood when talking to that many different people with different opinions each day in the hospital.
First thing I learned...I understand that doctors and nurses are human and can make mistakes. I realize I am human and have made many mistakes, and I need to offer others grace, because I know others have offered me grace on my mistakes.
Second thing I learned was...always do your research. We so often hear someone say something and then take it as complete fact and truth. I see this in politics all the time. I also see this often in religion. God’s word should be able to always pass the Bible test. If you hear something from an individual, it should be backed up by the word of God. We need to read the Bible and find out for ourselves. We need to research facts from a reliable source before pass it off as truth. I don’t think any news media stations fully report facts anymore. They are so concerned about being the first to get a story out or lean it towards their view that they don’t check to see if its actually true.
Ok, sorry, I had a big tangent there. Needless to say, I will be doing a lot more research on blood transfusions. I thought maybe I heard the doctors wrong, but Michael said no, he also heard the doctors tell us only B- blood while we were in the hospital. I’m glad I’m not crazy, but at the same time I feel like I have a lot of unanswered questions now.
The biggest thing I learned today was about the big blood shortage in DFW now. The blood supply was up after all the big summer blood drives, but now they are in deficit again. More and more people require transfusions each day and the blood supply must be replenished. Haylie’s doctor said that twice this week there were NO platelets available...at all...for sick kids who badly needed them.
There are lots and lots of kids besides Haylie that depend on transfusions to save their life. If you can donate, please do the next time you get a chance. It doesn’t matter what your blood type is, because all types are desperately needed. Your donation really can help save a life.
Thank you all!
#HealingForHaylie
I have to be honest, today was really rough. I’ve held off writing this post until my emotions settled down some so I could think more clearly. I have to say, I have learned several important lessons today that can apply to a lot of other areas in my life and I’m hoping you can apply them to yours as well.
First - update on Haylie. She had a spinal tap with a chemo injection scheduled for 8:15am. Her levels have started dropping significantly and unfortunately, she did not make the blood count levels required for the spinal tap first thing this morning. She required a platelet transfusion before they would be able to begin. The blood and platelet supply is very low right now, so they did not have any B- platelets available. She had a transfusion of A- which was fine. I had been told by doctors that platelets that were not an exact match were fine because they take all the proteins out so your body does not react. I was told that Haylie could only have B- blood transfusions because of the many transfusions she would require due to her leukemia. Doctors told me she could not receive O-(the universal donor) except in an emergency, because her body would build antibodies to the blood. I know this because I asked several times since I am also O- and wanted to donate for her. Ok, flash back to today. Haylie’s hemoglobin was at 6.8 so she also required a blood transfusion on top of the platelet transfusion. I asked 2 separate nurses if they had B- blood available for her. Both assured me yes.
After Haylie woke up in recovery and was super hungry (it was after 1:00 at this time because we had to wait so long for the platelets to arrive for her first transfusion before the spinal tap. She hadn’t had anything to eat or drink since 8:30 the night before so I ran to the vending machine to get a bag of chips for her. When I returned I was shocked to see O- blood hooked up getting ready for the transfusion. I stopped the nurse and said, you said she was getting B-! The nurse said yes again, and I showed her that it was O- not B- She told me it was the same thing. I was a little shocked after having been told only B- could be used for her. The doctor was called back and she assured me it was fine and they didn’t want to waste the O- blood. This is a tough spot to be in as a parent. After being told nothing but B- would work for her, to being told it was fine and we are going to transfuse it now was a little scary. I am the only voice for my child when at the hospital and it’s my job as a mom to make sure her best interests are at hand. I am learning so much about cancer and blood but there is still so much that I don’t know. We depend on the doctors and nurses for the correct information and when we are told conflicting information it worries me as a parent. I realize sometimes medical teams can make mistakes too or information can be miscommunicated. I have to say the hospital has been great and our doctor is really awesome. We had up to 4 doctors (intern, resident, attending, fellow) and many nurses each day so I can see where information can be misunderstood when talking to that many different people with different opinions each day in the hospital.
First thing I learned...I understand that doctors and nurses are human and can make mistakes. I realize I am human and have made many mistakes, and I need to offer others grace, because I know others have offered me grace on my mistakes.
Second thing I learned was...always do your research. We so often hear someone say something and then take it as complete fact and truth. I see this in politics all the time. I also see this often in religion. God’s word should be able to always pass the Bible test. If you hear something from an individual, it should be backed up by the word of God. We need to read the Bible and find out for ourselves. We need to research facts from a reliable source before pass it off as truth. I don’t think any news media stations fully report facts anymore. They are so concerned about being the first to get a story out or lean it towards their view that they don’t check to see if its actually true.
Ok, sorry, I had a big tangent there. Needless to say, I will be doing a lot more research on blood transfusions. I thought maybe I heard the doctors wrong, but Michael said no, he also heard the doctors tell us only B- blood while we were in the hospital. I’m glad I’m not crazy, but at the same time I feel like I have a lot of unanswered questions now.
The biggest thing I learned today was about the big blood shortage in DFW now. The blood supply was up after all the big summer blood drives, but now they are in deficit again. More and more people require transfusions each day and the blood supply must be replenished. Haylie’s doctor said that twice this week there were NO platelets available...at all...for sick kids who badly needed them.
There are lots and lots of kids besides Haylie that depend on transfusions to save their life. If you can donate, please do the next time you get a chance. It doesn’t matter what your blood type is, because all types are desperately needed. Your donation really can help save a life.
Thank you all!
#HealingForHaylie
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| Getting blood drawn for labs |
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| Platelets finally arrived for the transfusion |
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| Getting ready for the spinal tap |
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| Sweet girl. In the recovery room. |
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| She woke up and was ready to eat. She wanted Chicken Express. |
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| Getting blood |
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| Worn out. Still had 2 more hours to go on her transfusion. |
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