Taylor had a really good week after missing the chemo. Within a few days her voice was starting to com back some and got a bit better each day. It is now almost all the way back to normal! She was also full of energy and back to her normal crazy self. She was eating almost as well as she use to as well.
She did end up having the UTI and has been on meds for that and it is better, it was from E Coli somehow. Anyway, she had started complaining of stomach pain really badly in the mornings and so we thought maybe the feedings were bothering her. So we cut back on the amount we were giving and it got better. In talking with the Dr yesterday about it though, we realize that may have bene coincidence with the UTI, maybe the pain was from it and as she got meds at the same time as we backed off food, it got better. So we are to go back to 2 cans of pediasure over a 12 hour night period.
Mon Taylor and her big sister were playing and her feeding tube got ripped out of her nose. So she had to go without feedings for 2 nights. We got it put back in yesterday, that is so not fun. Poor Taylor. Hopefully it stays in this time and nothing makes it come out.
Tues we were back at ENT to get her vocal chords checked out. They looked back to normal and the Dr could definitely hear her talking this time. So we were clear for going back to the Vincristine drug on Wed.
Her redo of Chemo dose 7 went well. They did a 50% dose of the Vincristine to watch for the next week to see if it will mess with her voice again or not. If it goes well, then next week it will go up to 75%, then 100%. If it does mess with her voice, then we will stop Vincristine and try a different regimin. She is down in weight just a bit and her counts are low this time, at 580. I thought that was strange. So anyway, we have to make sure she doesn't get around sick people for now. She feels fine though and is having fun playing. Even today, after having chemo she is playing and eating and being herself! It is awesome! However, last night she started the fussing again a little bit. She woke me up crying at one point and when i went in there, she said she threw up. I looked around but it was only a little spit up. We went potty and cleaned up her hand and she went back to sleep. I did leave the bucket next to her bed just in case though.... which I am soooo glad I did because a little while later I heard her get up and throw up. She threw up a lot, all in the bucket. So I stopped the feeding. i don't know if she is nautious from the chemo or if the feedings are bugging her that bad. So we will just have to wait and see. I am glad to see she is fine today! She has been eating well and playing all day!
Showing posts with label neutropenia. Show all posts
Showing posts with label neutropenia. Show all posts
Thursday, 21 March 2013
Wednesday, 6 March 2013
Chemo #5 & #6, Make a Wish
Chemo Day 5 went well. It was a quicker visit since she only needed one of the Chemo meds. She gained a pound since they put the tube in that last week. So that is awesome! Her # is also up to like 1150. She has not gotten sick at all this past week either. Her hair did finish mostly falling out, so we had to trim up some straggles. She has a bit of hair left, sort of like a baby has. With the hair missing and the tube in her nose and her being so tiny and skinny, she looks like a really sick kid. But she is pretty healthy and doing well.
During the week after visit 5, we started noticing Taylors voice changing. She now talks extremely soft. It is so cute to hear her but it is really weird and we are not sure if this is something that is wrong with her or just a little side effect that has no negative meaning to it. It affects everything; her talking, laughing, crying, etc. When she has her freak out moments in the middle of the night, it makes them sound worse than they are. It is like she can't breathe or something. There is not much sound and a lot of breath type sound and she is all disoriented and crying and moaning. It is not fun to see her like that. It is hard to know what to do. It is not easy to snap her out of that state. She has been doing this waking up stuff again a lot lately. I really hope this doesn't continue the whole year of chemo!
Last weekend, the Make a Wish people came to our house for a visit. They were really nice. We talked about the Make a Wish program and what wish Taylor wants to make. It was hard to really get her to understand what they were there for and how to make a wish. They had some good ways of getting info from her like what she likes and such to help us all get an idea of what would be a good wish for her to make. We ended up choosing to go to Nickelodeon Resort where she can meet Dora, play at a water park, go to the beach, and anything else in the Orlando area that we can squeeze in during a trip down there (like maybe lego land and disney). So we will get to find out if that wish can happen or not in the near future.
This past week a lot of our family has caught the stomach bug that is going around. First my baby, then my hubby, then my oldest daughter (though no vomit for her), and now Taylor and my oldest son. I am tired of people throwing up! Taylor threw up yesterday morning all over the kitchen. She hasn't been eating much at all the past couple days! But the feeding from the tube the night before went everywhere. Last night Taylor got fever that spiked at 100.6 for maybe half an hour an then went down to 99.6. She freaked out a lot last night and really complained about her tummy and then threw up again. I called the Doc and this time this one said that it was ok to watch the fever like that and that if it goes down below 100.4 in an hours time then we don't need to go to the ER. That is nice info to know, wish they would have mentioned that a long time ago! It could have saved us two trips! I am glad we decided to watch it on our own! I was awoken this morning an hour early to my son throwing up in the bathroom. Then, Taylor threw up again and this time it ejected her feeding tube out of her mouth so we had to remove it. Fun times!
Today was Chemo day 6. It went well. We were taken right back and put in a special room since Taylor has a stomach bug. She got to watch a Dora movie which made her happy. Her number is 610 which isn't great but still good enough. They say her weight went up 6 oz which I was surprised by due to the week we had. But then I realized later that last week they weighed her without her shoes and today she was wearing boots and they didn't make her take them off... so that could be causing the gain. Who knows. They are waiting to put her tube back in until they know she is done being sick. So we might be going back up there Fri to do that. It was another short visit as only the push med was needed today.
During the week after visit 5, we started noticing Taylors voice changing. She now talks extremely soft. It is so cute to hear her but it is really weird and we are not sure if this is something that is wrong with her or just a little side effect that has no negative meaning to it. It affects everything; her talking, laughing, crying, etc. When she has her freak out moments in the middle of the night, it makes them sound worse than they are. It is like she can't breathe or something. There is not much sound and a lot of breath type sound and she is all disoriented and crying and moaning. It is not fun to see her like that. It is hard to know what to do. It is not easy to snap her out of that state. She has been doing this waking up stuff again a lot lately. I really hope this doesn't continue the whole year of chemo!
Last weekend, the Make a Wish people came to our house for a visit. They were really nice. We talked about the Make a Wish program and what wish Taylor wants to make. It was hard to really get her to understand what they were there for and how to make a wish. They had some good ways of getting info from her like what she likes and such to help us all get an idea of what would be a good wish for her to make. We ended up choosing to go to Nickelodeon Resort where she can meet Dora, play at a water park, go to the beach, and anything else in the Orlando area that we can squeeze in during a trip down there (like maybe lego land and disney). So we will get to find out if that wish can happen or not in the near future.
This past week a lot of our family has caught the stomach bug that is going around. First my baby, then my hubby, then my oldest daughter (though no vomit for her), and now Taylor and my oldest son. I am tired of people throwing up! Taylor threw up yesterday morning all over the kitchen. She hasn't been eating much at all the past couple days! But the feeding from the tube the night before went everywhere. Last night Taylor got fever that spiked at 100.6 for maybe half an hour an then went down to 99.6. She freaked out a lot last night and really complained about her tummy and then threw up again. I called the Doc and this time this one said that it was ok to watch the fever like that and that if it goes down below 100.4 in an hours time then we don't need to go to the ER. That is nice info to know, wish they would have mentioned that a long time ago! It could have saved us two trips! I am glad we decided to watch it on our own! I was awoken this morning an hour early to my son throwing up in the bathroom. Then, Taylor threw up again and this time it ejected her feeding tube out of her mouth so we had to remove it. Fun times!
Today was Chemo day 6. It went well. We were taken right back and put in a special room since Taylor has a stomach bug. She got to watch a Dora movie which made her happy. Her number is 610 which isn't great but still good enough. They say her weight went up 6 oz which I was surprised by due to the week we had. But then I realized later that last week they weighed her without her shoes and today she was wearing boots and they didn't make her take them off... so that could be causing the gain. Who knows. They are waiting to put her tube back in until they know she is done being sick. So we might be going back up there Fri to do that. It was another short visit as only the push med was needed today.
Wednesday, 20 February 2013
Chemo Day 4
Last night she was in and out of sleep a couple times. One was a doozy and I had to get her to wake out of her fit and calm her down. We had to get up early this morning to be at a 7:30 appt for the chemo, blah. She was a bit whiney, but who isn't that early in the morning? We got there a little early and grabbed some breakfast in the cafeteria. When we went into the clinic, one of the nurses gave her a doll that was bald. It is a gift from some group that makes them and leaves them for kids to have. Then they got her tubie in and took her blood and she did awesome! I think that was the best time yet! Then we set up the candy land game to start playing. However, we were then called away to get her stats and go to a room to see the doc.
Her number came back 540!!! Boo!!! So, we got a clearer explanation about the numbers. A neutrphil count of 1500 or lower is considered neutropenic. 1000 or lower is like medium neutropenic and 500 or lower is DANGER neutropenic. At that point is where they worry and admit you to the hospital. So, Taylor is almost to that point right now. SO, if she gets fever again, most likely we will have to be admitted to the hospital. Pray that she does well this week and doesn't get sick. Also, since her weight is doing so poorly, they are afraid of her being malnourished. So, we talked to the doc and a nutritionist and they suggested a feeding tube. While we were talking, Taylor was curled up in my lap almost falling asleep. I guess those meds do make you tired. I stroked her hair as she lay there and I realized that some of her hair was coming out. So, I guess that process has started :(
Anyway, we went back out to the treatment area and someone else had taken her seat with the candy land game set up. So she started crying and I had to calm her down. We picked another chair and then the child life specialist came to see what was wrong and she said she had another candy land. She left and quickly returned with the game! She is a hero! We played that and some other games while she got her chemo. Then it was time to get the ng feeding tube. The hero came back with us and brought a doll that had a tube in her nose so she could see it. She explained to Taylor what it was and why she needed it and what would happen. You could tell she understood; at the end she started getting sad and scared. It was so cute and sad at the same time. Then came the nurse. The She did NOT like getting the tube in at all. It took 4 of us to get the job done and she screamed bloody murder. Poor thing! i hate that she has to go through all this stuff. On our way out the door (10:30), we ran into the teenager. She had a bad week as well; although she didn't have to go to the hospital for anything. Her hair is also starting the fall out process. It was good to chat a bit and then we were glad to be on our way. It was hard to get there early, but it was nice to get in and out so fast and get to pick whatever seat we wanted.
Taylor fell asleep on the way home. She looked so tired and "sick" like. We picked up her siblings from our friends house (which was so awesome the she watched them and they got to have a play date!!!) and then we went home to eat lunch. She was not hungry, so she didn't eat till like 1pm. She is still a little whiney and looks really tired but she is playing video games. The nutrition people are supposed to come by dropping off the machine and "food" for her tube feedings. She will be getting feedings during the night while she sleeps. This should be interesting to learn to deal with. Anyway, Here is to hoping for a good week!
ER #2 & end of wk 3
Well after posting the last blog on Sunday, her fever went back up to 100.6. So we called and were sent back to ER. This time it was only 7pm and this trip to the ER went much better than Wed night's. The doctor was much better as well as the nursing staff. They took her stats as normal and she is down to 26 lbs. That is not good! She has lost 2 lbs since starting chemo. It took her a year to gain 4 lbs and now half of it is gone. They took her blood and ran the tests. This time her neutraphil number was 1080. They say that is still a safe number and sent us home after another dose of antibiotic. We were home by 12:30. Her sleep was again interrupted by crying and screaming and tummy pain. Bummer! She had some tylenol around 1am and had no fever the next day.
Monday was pretty uneventful, which is good. She ate better this day. She even got a little bit carried away in playing with mer brother Mon night and I had to tell her to calm down and be careful. She slept good Mon night except for one time waking up coughing like crazy. Tuesday was a good day as well. Still no fever! We had her eye checkup today. She did great; they always say how good she is and cooperative. She was able to complete a seeing test looking at letters this time. Her vision is 20/70 which is still pretty good. The doc was happy and said they hope that the chemo will keep this vision or maybe even make it better. So we shall see. We also were finally able to pick up the scrips for her pain meds and apetite stimulant. Supposedly, both these meds can make you drwsy. This should be interesting. When we got home, I gave her the first doses. She ate pretty well this day. For snack time she wanted a whole meal :) She is still being very picky though so I just let her eat whatever she wanted.
Monday was pretty uneventful, which is good. She ate better this day. She even got a little bit carried away in playing with mer brother Mon night and I had to tell her to calm down and be careful. She slept good Mon night except for one time waking up coughing like crazy. Tuesday was a good day as well. Still no fever! We had her eye checkup today. She did great; they always say how good she is and cooperative. She was able to complete a seeing test looking at letters this time. Her vision is 20/70 which is still pretty good. The doc was happy and said they hope that the chemo will keep this vision or maybe even make it better. So we shall see. We also were finally able to pick up the scrips for her pain meds and apetite stimulant. Supposedly, both these meds can make you drwsy. This should be interesting. When we got home, I gave her the first doses. She ate pretty well this day. For snack time she wanted a whole meal :) She is still being very picky though so I just let her eat whatever she wanted.
Thursday, 14 February 2013
Trip to ER
After Chemo, later during the day she was complaining about her tummy more than usual. I thought this was odd. Last night Taylor left the dinner table and laid down on the couch and fell asleep. I checked her after a while and realized she was starting to get a fever. So I kept a watch on it. Of course she kept waking up fussing. I moved her to my bed after the rest of the kids went to sleep. Her fever was slowly rising and she still kept waking. When I went to bed around midnight or so her fever was hard to read. I kept trying to get an accurate reading over the next 45 min. I DID NOT want to have to go to the hospital. It ranged anywhere from 99.8-102. So, I was like, ugh! I called the oncall Dr and they called back right away. They said we had to bring her into the ER. So, at 1:15am we were on the road.
It is amazing how fast you can get to Vanderbilt at 1am in the morning! They were ready for us when we got there. But this trip to the ER was different than any I have had before. They didn't do things in the normal way I have experienced before. They did not get her stats right away. They actually never got her weight the whole time we were there. They gave me a thermometer and had ME take her temperature. That was odd. Then a Dr came and talked to us, but I was not that impressed with the conversation. Then a nurse asked if Taylor just had chemo. I said she had and then he came in with a mask for her to put on and they moved us to a special room with glass doors and all the staff would come in with coverings and masks on.
Then, really long story short, she had fever and since she has a port we had to go to get her checked to see if there is a bacterial infection going on. So they drew blood work and ran tests on it and also took a flu test. (She did good when the accessed her port this time by the way, WAY better than earlier at Chemo) She started getting some sort of hives, so they gave her some Benadryl. They needed a urine sample and Taylor didn't want to go. I told the Dr's she would go if I took her and so off we went. Weird that she didn't even want to get up to potty. Later, one Dr (or nurse, not sure) came back and said Taylor's WBC count was down to 2.3 which is bad (normal is 4-12) and she said she had Neutropenia. Which is when the immune system is very compromised and she is at risk for infections. Which is weird because her number was 4.2 or something earlier when we were at the chemo appt. (before chemo her # was 10) She then told me that they were checking with the oncology dept on what they want to do. Later, the original Dr that we saw when we first came into the ER came in and said Taylor was fine. That her counts were still safe. ??? Now, I am really confused. She said the cells that they worry about still have a good enough number so she is not at risk; she is just like any other kid and does not need to wear a mask or anything like that. She is not neutropenic. Then, they gave her an antibiotic just to be safe and gave her some tylenol as well. When that was over we were all done. They never mentioned anything about a bacteria test. They never came back with any flu test results or urine results. There was a lot more things that happened during this visit that bothered me, worried me, confused me etc. I was NOT impressed at all. I was pretty disappointed in the whole experience. I was surprised to have that from Vanderbilt. I even had to correct one of the "students" when she was doing something because she did it wrong... and I was not sure how dangerous that was... not cool.
Anyway, so we left and got home around 7am when the rest of my family was up and getting ready to take their brother to school. Caught up with the family and got Taylor situated on the couch. O looked at her and she looked pale. I didn't notice that before. I was dead tired, had not slept a wink. So I laid down to take a nap. The hubs took the kids out to school stuff and Taylor stayed home with me watching tv and sleeping. After 2-3 hrs of a nap, I got up and contacted our oncologist about last night and wanted some real answers. I am no longer confused. The nurse was very helpful and informative. They are waiting on the bacteria culture to see if there is an infection. That takes 48 hrs. The antibiotic they gave her was preventative, to protect her just case the test is positive. So, no she is not neutropenic, no she doesn't need a mask, yes watch the fever but do not give her any tylenol or anything without talking to Dr., her neutrophil count is 2400 which is fine (below 1000 is where they get worried). They still are not sure why the fever until the test comes back. Nobody has mentioned anything about why the hives still. We are to call back if her fever gets back to 100.4 or higher or anything else happens that we are worried about. At that point they will guide us on what to do. We have till 5am tmrw till the antibiotic wears off. At that point, if fever is up, we need to call and will have to go back to hospital for another dose to protect her for the next 24 hrs until we get the bacteria test results. So it is a wait and see type thing right now.
Since we have been home, Taylor has slept a lot. She only slept off and on throughout the night. So she was catching up. But I finally had to get her up and make her awake and see how she is doing. I needed to check her energy level, her desire to play, her temp, her desire to eat or drink, etc. I had to force her to drink some water. She was really whiney. She still has fever but low enough. I was able to get her to eat a few goldfish crackers. I also got out a pediasure for her. She did not like the 1.5 kind they want her to have. So I switched to a strawberry flavored regular one. She still didn't really like it or want it but I got her to drink some as she watched tv. She still doesn't want to eat or drink. She doesn't want to play or take a bath or anything. She is still complaining about her tummy. She was sitting there and started whining and saying the peepee was coming out. I said well hurry let's go to the potty. Again she didn't really want to. While she was going she said it was hurting her tummy when she went potty. I think I remember reading somewhere that this was a bad sign??? I will watch this from now on as well. Then, I got her to sit and play with the kindle aps for a bit just now. So, we will see how the rest of the day goes. I think that is all for now, I will update important info as I can.
It is amazing how fast you can get to Vanderbilt at 1am in the morning! They were ready for us when we got there. But this trip to the ER was different than any I have had before. They didn't do things in the normal way I have experienced before. They did not get her stats right away. They actually never got her weight the whole time we were there. They gave me a thermometer and had ME take her temperature. That was odd. Then a Dr came and talked to us, but I was not that impressed with the conversation. Then a nurse asked if Taylor just had chemo. I said she had and then he came in with a mask for her to put on and they moved us to a special room with glass doors and all the staff would come in with coverings and masks on.
Then, really long story short, she had fever and since she has a port we had to go to get her checked to see if there is a bacterial infection going on. So they drew blood work and ran tests on it and also took a flu test. (She did good when the accessed her port this time by the way, WAY better than earlier at Chemo) She started getting some sort of hives, so they gave her some Benadryl. They needed a urine sample and Taylor didn't want to go. I told the Dr's she would go if I took her and so off we went. Weird that she didn't even want to get up to potty. Later, one Dr (or nurse, not sure) came back and said Taylor's WBC count was down to 2.3 which is bad (normal is 4-12) and she said she had Neutropenia. Which is when the immune system is very compromised and she is at risk for infections. Which is weird because her number was 4.2 or something earlier when we were at the chemo appt. (before chemo her # was 10) She then told me that they were checking with the oncology dept on what they want to do. Later, the original Dr that we saw when we first came into the ER came in and said Taylor was fine. That her counts were still safe. ??? Now, I am really confused. She said the cells that they worry about still have a good enough number so she is not at risk; she is just like any other kid and does not need to wear a mask or anything like that. She is not neutropenic. Then, they gave her an antibiotic just to be safe and gave her some tylenol as well. When that was over we were all done. They never mentioned anything about a bacteria test. They never came back with any flu test results or urine results. There was a lot more things that happened during this visit that bothered me, worried me, confused me etc. I was NOT impressed at all. I was pretty disappointed in the whole experience. I was surprised to have that from Vanderbilt. I even had to correct one of the "students" when she was doing something because she did it wrong... and I was not sure how dangerous that was... not cool.
Anyway, so we left and got home around 7am when the rest of my family was up and getting ready to take their brother to school. Caught up with the family and got Taylor situated on the couch. O looked at her and she looked pale. I didn't notice that before. I was dead tired, had not slept a wink. So I laid down to take a nap. The hubs took the kids out to school stuff and Taylor stayed home with me watching tv and sleeping. After 2-3 hrs of a nap, I got up and contacted our oncologist about last night and wanted some real answers. I am no longer confused. The nurse was very helpful and informative. They are waiting on the bacteria culture to see if there is an infection. That takes 48 hrs. The antibiotic they gave her was preventative, to protect her just case the test is positive. So, no she is not neutropenic, no she doesn't need a mask, yes watch the fever but do not give her any tylenol or anything without talking to Dr., her neutrophil count is 2400 which is fine (below 1000 is where they get worried). They still are not sure why the fever until the test comes back. Nobody has mentioned anything about why the hives still. We are to call back if her fever gets back to 100.4 or higher or anything else happens that we are worried about. At that point they will guide us on what to do. We have till 5am tmrw till the antibiotic wears off. At that point, if fever is up, we need to call and will have to go back to hospital for another dose to protect her for the next 24 hrs until we get the bacteria test results. So it is a wait and see type thing right now.
Since we have been home, Taylor has slept a lot. She only slept off and on throughout the night. So she was catching up. But I finally had to get her up and make her awake and see how she is doing. I needed to check her energy level, her desire to play, her temp, her desire to eat or drink, etc. I had to force her to drink some water. She was really whiney. She still has fever but low enough. I was able to get her to eat a few goldfish crackers. I also got out a pediasure for her. She did not like the 1.5 kind they want her to have. So I switched to a strawberry flavored regular one. She still didn't really like it or want it but I got her to drink some as she watched tv. She still doesn't want to eat or drink. She doesn't want to play or take a bath or anything. She is still complaining about her tummy. She was sitting there and started whining and saying the peepee was coming out. I said well hurry let's go to the potty. Again she didn't really want to. While she was going she said it was hurting her tummy when she went potty. I think I remember reading somewhere that this was a bad sign??? I will watch this from now on as well. Then, I got her to sit and play with the kindle aps for a bit just now. So, we will see how the rest of the day goes. I think that is all for now, I will update important info as I can.
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