Day 17 - Well.. we knew this was coming...
Sometime around 5am this morning, Ryan spiked a fever. This was not surprising, as his labs are in the toilet and he has no immune system. The nurses caught it really early and we immediately started him on antibiotics. He got as high as 101.4. Cultures were drawn and it appears that he has translocated bacteria from his intestines. This is a common thing for Ryan, so the antibiotics we picked were the right ones. (For our medical friends, he's growing Gram Negative Rods: so the standard E-Coli, Klebsiella, Pseudomonas. He's also growing Gram Positive Cocci in Chains which may be a Strep from his throat). He's started on Ceftaz and Merepenum, then switched him to Vancomyacin and Gentamycin, which are both designed for these bugs and he's had them before so we don't expect any side effects. By this evening, his fever is gone and it looks like the bugs are getting taken care of.
We were really impressed with how fast things were resolved with this little hiccup. He's still getting a little nauseous and still doesn't want to eat, but this is fine (the IVs are keeping him hydrated, so we're not pushing the issue).
I asked Patrick for pictures, and he told me I didn't want them. He was very pale (he got RBC and platelets today), and very tired. The doctors were really impressed that his numbers were as bad as they were, and he was still up talking. He looked better this evening, but he is still very yellow (jaundice from the high bilirubin from stress on his liver). This reminds us of when his liver was failing, although the doctors have assured us that the liver is not failing, it's just not working right now because of all the crap we are doing to him. As we often said, the liver is amazing at repairing itself, and the doctors think that his liver is doing fine.
Thank you to all the staff and students at Geyser for the package they got today. Patrick is holding on to it until tomorrow, when Ryan is feeling better, so they can go through it together. :)
The doctors are going to hold off on the PEG chemo which was scheduled for tomorrow, since his body is not really ready for it. They will plan on giving it later this week, if his body starts to feel better. Although this infection kinda freaks me out, everyone seems to think it's par for the course and he's holding up well. Still sucks though.
Thank you all for the prayers and good thoughts! We're trying to keep positive. :)
-------------------------------------------------------------
Blasts - (not checking this every day anymore)
ANC - 0
Hematocrit - 18.1
Hemoglobin - 6.3
RBC - 2.1
WBC - < 0.2
Creatine - 0.3
Glucose - 135
Platelets - 24
PT - 18.4
APTT -
Bilirubin (Direct) - 1.6
Bilirubin (Indirect) - 2.8
Bilirubin (Total) - 4.4
ANC - This tells us how well his body can fight off normal infections... We want this to be greater than 500.. Normal would be greater than 1500.
Hematocrit/Hemoglobin (H&H) - This is a number of how much blood is in his system. His normal range is 28-32/9-11. The numbers are linked, so they are usually referenced together. We will transfuse him more Red Blood Cells if he gets below 21/7.0. (this is the blood you donate at blood drives, and we expect to use lots of it)
RBC (Red Blood Cells) - The number of Red Blood Cells in his body. Normal is 4 - 5.5. He has always been low, so we are happy with numbers around 2.5. This number will go down with chemo.
WBC (White Blood Cells) - This tells us how many white blood cells he has (in thousands). Normal is between 4.5 and 10. We expect this to remain low, between 1.5 and 2.5 for a while.
Creatine - This is a good number to make sure the kidneys are working. Normal range is between .5 and 1.2... If this gets higher, it means his kidneys are struggling.
Glucose - This number tells us that the pancreas is working. Some kids struggle with diabetes as a result of the meds. We want to see this number remain above 60 and below 150.
Lymphocytes - Non-cancerous T-Cells and B-Cells. Normal would be around 1000, so we expect this number to be low. This is the number of cells that will kill off bad cells like viruses.
Platelets - This is the number of platelets in the blood, which helps with clotting. Normal is greater than 150. We will transfuse more platelets if he gets lower than 30.
Co-Ags (PT,APTT) - These numbers tell us how fast he clots.
Bilirubin (Direct/Indirect/Total) - Bilirubin tells us how well the liver is working. Normally, these numbers are less than 1, which is good. However, when the liver starts to be under stress, they may go up. Total Bilirubin is the Conjugated (Direct) + Unconjugated (Indirect). The doctors said these numbers might come up, as his liver is trying to process all the meds we are giving him.
We were really impressed with how fast things were resolved with this little hiccup. He's still getting a little nauseous and still doesn't want to eat, but this is fine (the IVs are keeping him hydrated, so we're not pushing the issue).
I asked Patrick for pictures, and he told me I didn't want them. He was very pale (he got RBC and platelets today), and very tired. The doctors were really impressed that his numbers were as bad as they were, and he was still up talking. He looked better this evening, but he is still very yellow (jaundice from the high bilirubin from stress on his liver). This reminds us of when his liver was failing, although the doctors have assured us that the liver is not failing, it's just not working right now because of all the crap we are doing to him. As we often said, the liver is amazing at repairing itself, and the doctors think that his liver is doing fine.
Thank you to all the staff and students at Geyser for the package they got today. Patrick is holding on to it until tomorrow, when Ryan is feeling better, so they can go through it together. :)
The doctors are going to hold off on the PEG chemo which was scheduled for tomorrow, since his body is not really ready for it. They will plan on giving it later this week, if his body starts to feel better. Although this infection kinda freaks me out, everyone seems to think it's par for the course and he's holding up well. Still sucks though.
Thank you all for the prayers and good thoughts! We're trying to keep positive. :)
-------------------------------------------------------------
Blasts - (not checking this every day anymore)
ANC - 0
Hematocrit - 18.1
Hemoglobin - 6.3
RBC - 2.1
WBC - < 0.2
Creatine - 0.3
Glucose - 135
Platelets - 24
PT - 18.4
APTT -
Bilirubin (Direct) - 1.6
Bilirubin (Indirect) - 2.8
Bilirubin (Total) - 4.4
Description of lab numbers, in layman's terms:
Blasts - roughly the number of leukemia cells found in the sample. We want this to be 0.ANC - This tells us how well his body can fight off normal infections... We want this to be greater than 500.. Normal would be greater than 1500.
Hematocrit/Hemoglobin (H&H) - This is a number of how much blood is in his system. His normal range is 28-32/9-11. The numbers are linked, so they are usually referenced together. We will transfuse him more Red Blood Cells if he gets below 21/7.0. (this is the blood you donate at blood drives, and we expect to use lots of it)
RBC (Red Blood Cells) - The number of Red Blood Cells in his body. Normal is 4 - 5.5. He has always been low, so we are happy with numbers around 2.5. This number will go down with chemo.
WBC (White Blood Cells) - This tells us how many white blood cells he has (in thousands). Normal is between 4.5 and 10. We expect this to remain low, between 1.5 and 2.5 for a while.
Creatine - This is a good number to make sure the kidneys are working. Normal range is between .5 and 1.2... If this gets higher, it means his kidneys are struggling.
Glucose - This number tells us that the pancreas is working. Some kids struggle with diabetes as a result of the meds. We want to see this number remain above 60 and below 150.
Lymphocytes - Non-cancerous T-Cells and B-Cells. Normal would be around 1000, so we expect this number to be low. This is the number of cells that will kill off bad cells like viruses.
Platelets - This is the number of platelets in the blood, which helps with clotting. Normal is greater than 150. We will transfuse more platelets if he gets lower than 30.
Co-Ags (PT,APTT) - These numbers tell us how fast he clots.
Bilirubin (Direct/Indirect/Total) - Bilirubin tells us how well the liver is working. Normally, these numbers are less than 1, which is good. However, when the liver starts to be under stress, they may go up. Total Bilirubin is the Conjugated (Direct) + Unconjugated (Indirect). The doctors said these numbers might come up, as his liver is trying to process all the meds we are giving him.
Comments
Post a Comment