Saturday she threw up and her counts were still at 10 and still getting fever until it finally stopped during the day. She started having lots of pain and neuropathy, she was constantly crying and screaming about it. Once they got her some meds for it she was much better and back to normal. She was with her Dad, as we switched out Fri afternoon. They enjoyed some time together watching tv curled up on the bed. Too bad nobody was there to get a pic of that. She took a long nap and then got up around 5 and then skyped with me and her siblings around 6. She loved that and didn't want us to hang up. She got sad and started crying. But then afterwards skyped grandma and then went back to tv. Her NG tube got clogged and they had to replace it, but he nurse put a bigger size in and it makes it hut worse going in and is more uncomfortable, ugh. She didnt want to go to sleep, and was up till like 2. She didn't let Erick get good sleep either.
This morning her counts were finally going up. Her fever has stayed away. It looks like she may be able to go home tmrw. She did have low hematocrit however, and had to get a blood transfusion. That is something new to us. Daddy was going to go home so we could switch agin, put Taylor wanted him to stay so he did. Praying she is doing great tmrw so she can get back to her family.
Sunday 2 February 2014
Friday 31 January 2014
Day 2 & 3
Her counts went up a bit yesterday, to 50, and her platelets came up to over 100 after the transfusion. Her fever still keeps coming back and the viral swab came back positive for Corona virus, which is like a cold so that is probably what is causing all this along side the chemo.
The hospital staff surprised her with a bunch of bday presents and a sign for her door. It was really neat. Our children's director from church came by to see her as well. That was really nice. She brought balloons but due to other kids' allergies they had to stay at the front. Her grandma and Nana and Papa all called to talk to her as well.
She took a really long nap yesterday and didn't eat pretty much all day. She had some Kit Kat after lunch time and then at dinner wanted some mac n cheese and cake. What should have arrived in 45 min, 1.5 hours later (after closing of the cafeteria) still not here and they called up and apologized like crazy that the order was over looked. Then they said they were out of mac n cheese. She didn't want anything else and it was her bday so the lady said she would make it happen. About 15 min later her food was here! She didn't even eat half of it but at least she ate some.
This morning she was up early again. She still has fever and her counts are back down, now to 10. So I am sure it will be at least another couple days. Her counts need to be progressing upwards consistently and fever gone for 24 hrs. She was getting pretty tired around lunch time when I was about to leave and Daddy came. Then, she seemed to become more alert withall the movement around the room.
The hospital staff surprised her with a bunch of bday presents and a sign for her door. It was really neat. Our children's director from church came by to see her as well. That was really nice. She brought balloons but due to other kids' allergies they had to stay at the front. Her grandma and Nana and Papa all called to talk to her as well.
She took a really long nap yesterday and didn't eat pretty much all day. She had some Kit Kat after lunch time and then at dinner wanted some mac n cheese and cake. What should have arrived in 45 min, 1.5 hours later (after closing of the cafeteria) still not here and they called up and apologized like crazy that the order was over looked. Then they said they were out of mac n cheese. She didn't want anything else and it was her bday so the lady said she would make it happen. About 15 min later her food was here! She didn't even eat half of it but at least she ate some.
This morning she was up early again. She still has fever and her counts are back down, now to 10. So I am sure it will be at least another couple days. Her counts need to be progressing upwards consistently and fever gone for 24 hrs. She was getting pretty tired around lunch time when I was about to leave and Daddy came. Then, she seemed to become more alert withall the movement around the room.
Thursday 30 January 2014
Hospital visit 2014
I know it has been forever and I am sorry for that. Things got much better and I was tired and busy with life and other stresses. After her last visit the Docs decided to lower her chemo doses to 75% because they say she shouldn't be getting sick all the time like this on this treatment. Once they did that, she has been doing great. She got a fever once in like Oct I think but it was nothing but a quick ER visit for antibiotic.
She has had good visits and only had to miss getting chemo a time or two due to low counts. Her weight has gone up to over 31 lbs, which is amazing! She has been having fun and playing and being herself. Her hair has been growing and is pretty full now.
Her tumor has been shrinking over the year, it is about 2/3 the size as it was when we started!! So that is great news! Hopefully that keeps up and it goes away and stays away.
This past week she has not been eating all that well. Yesterday she weighed in at only 30 lbs 11 oz, s down a bit and her counts were too low for all her chemo, only 160, very neutropenic. So they just gave her the Vincristine. Her platelets have been low since last week as well but were ok enough, 55, not to do anything. Then, last night she got a fever around 5pm, 102.2 so we had to automatically go up to the ER and be admitted. We finally got a room in the hospital around 10pm. They gave her antibiotic and did viral swab in the ER and a chest xray as well since they thought they heard crackling in her chest, but it came back fine. Her fever went down all by itself while in the ER. When they took her blood, her counts were even lower, 40. Over night they gave her a platelet transfusion since those had now dropped below an acceptable level, 33. They also gave her the injection to get her counts back up since they are almost as low as they can get. Hopefully they go up fast and fever goes away and stays away and we can get out of here fast. She had been asking for some food since we go to the ER but she wasn't allowed to eat until she got to her room because she is on precautions. Once we got up here she asked for cereal and had some fruit loops. I was happy to see her eating.
Her fever came back over night, 100.9 so they gave her tylenol. She woke up early around 5:30 this morning not able to sleep anymore. So I let her start watching tv. Today is her 5th bday!
Happy birthday Taylor!
She is doing well. We have to wait for counts to go up, fever to stay gone, and make sure culture is negative. So prolly a couple days till release.
She has had good visits and only had to miss getting chemo a time or two due to low counts. Her weight has gone up to over 31 lbs, which is amazing! She has been having fun and playing and being herself. Her hair has been growing and is pretty full now.
Her tumor has been shrinking over the year, it is about 2/3 the size as it was when we started!! So that is great news! Hopefully that keeps up and it goes away and stays away.
This past week she has not been eating all that well. Yesterday she weighed in at only 30 lbs 11 oz, s down a bit and her counts were too low for all her chemo, only 160, very neutropenic. So they just gave her the Vincristine. Her platelets have been low since last week as well but were ok enough, 55, not to do anything. Then, last night she got a fever around 5pm, 102.2 so we had to automatically go up to the ER and be admitted. We finally got a room in the hospital around 10pm. They gave her antibiotic and did viral swab in the ER and a chest xray as well since they thought they heard crackling in her chest, but it came back fine. Her fever went down all by itself while in the ER. When they took her blood, her counts were even lower, 40. Over night they gave her a platelet transfusion since those had now dropped below an acceptable level, 33. They also gave her the injection to get her counts back up since they are almost as low as they can get. Hopefully they go up fast and fever goes away and stays away and we can get out of here fast. She had been asking for some food since we go to the ER but she wasn't allowed to eat until she got to her room because she is on precautions. Once we got up here she asked for cereal and had some fruit loops. I was happy to see her eating.
Her fever came back over night, 100.9 so they gave her tylenol. She woke up early around 5:30 this morning not able to sleep anymore. So I let her start watching tv. Today is her 5th bday!
Happy birthday Taylor!
She is doing well. We have to wait for counts to go up, fever to stay gone, and make sure culture is negative. So prolly a couple days till release.
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