Since Taylor had to miss week 4 of chemo last round, and we already had our MAW trip scheduled, she had a 3 wks off time instead of 2 week. it was so nice not having to worry about doctors for her for a while. Oh, yeah she lost her NG tube the Fri we left Florida and missed all the feedings until getting back to clinic the next Wed.
Last Wed she went for Chemo 1, and her counts were like 1400 so all was good. Her weight was down a pound though, and they were not happy with that. They want us to try better on getting all her full feedings. She got chemo for the day, had a nice day and then that night started getting fever, which got up to 100.9 and then after an hour to an hour and a half went down on its own. So, we never called it in. She had low fever the next day, and after that all was good. She was playing and acting fine. All weekend she was good, we even made it to church.
Then, Tues she woke up with a fever of 101.3 and we had to head up to the clinic. I was bummed because we already had an eye appt later that afternoon and did not want to spend the whole day at the hospital. We were able to get someone to watch the kids for us part of the day so that helped my hubby and I out a lot so that we were less stressed and able to get more work done. Her counts were around 1500 so that was good. One of her mosquito bites is really swollen and red and tender to where she is fussing and doesn't want to walk on her leg. They think she may have cellulitis in it. So they gave us some antibiotics for that and marked its size. They gave her some antibiotic in her port for the fever and then we were done just in time to make it to the eye appt.
The eye doc says things look good. There is less bulging and better tracking of the eye. They are not sure if the vision is better, same, or worse. They can see damage on the nerve from the tumor. She does not need glasses, but may in the near future need some patching done to strengthen the weak eye. So all in all, a good report.
That night her fever got up to 102.7, she was not able to take med for the cellulitis that night. It was too big a pill and mixing it in applesauce made her throwup. The next morning she was sitting on the couch after waking and she threw up again, all over herself (losing her NG tube again)... We went to her chemo appt and she was still fever at 101.8, they got her counts and she was up to 2400. So that was amazing. They said she did have a virus of some sort though which explains the fever. The cellulitis was different today, the swelling and pain were pretty much gone, but the redness covered a larger area of the leg. So there was debate on if it was getting better or worse. They wanted to make sure she got the antibiotic to treat this thing though because if it gets an infection in the blood it can be very dangerous. They wanted us to be admitted but since it is easier for us right now and it is workable, they are letting us go home with the meds and come back the next day for follow up. They went ahead and started her on chemo and ordered her a liquid version for us to try to put down her feeding tube. However, the insurance was down and they could not get approval while we were there. Finally, the clinic just ordered an inpatient dose for her to take. But instead of the liquid they came in with a pill dissolved in some apple juice. They put that, along with some pepcid, down her fresh NG tube and made us wait 30 min to make sure she would handle it ok and not throw it up. All went well and we were finally able to walk out of there by like 2pm. They wanted us to come back the next day just to check on the leg and fever. They didn't think they would need to draw labs or anything, it should not be a big visit.
They said to call if fever spikes again, and around 4pm, she was up to 103.3!!! OMG, this thing will not go away! I messaged them and 30 min later no response. I needed to know if I could give her any meds for the fever since it had been over 24 hrs since the rosefrin on Tues. So I called and had them paged. 30 min later, still nothing... so I went ahead and treated the fever... the poor girl was hot and that was high. About 15 min later I got a call. They said it was fine to give tylenol. Then I realized I had given motrin instead and that we were not supposed to do that... i started freaking out a bit. The nurse on the phone said it was fine just don't do it again and that it wasn't a big deal. I never have to treat the fever at home and I had totally forgotten the rules in the midst of my stressball of a life, I felt horrible. (Also, need to mention that this whole week my hubby has been battling a horrible knee pain. It is pretty crippling at times and has kept him off his feet a lot. Not sure when he will be able to go have that looked at. He prolly needs an MRI to figure out what the problem is. During our MAW trip it was his elbow that was acting like this and he could barely move the thing for a few days)
That night was horrible... T kept waking up and complaining about her stomach A LOT. I finally had to just shut off the feed. It got better after that. Then hubby was snoring was too much so I had to leave the room and I took Taylor with me to the living room couches. She was up a lot the rest of the night, talking weird in her sleep and such. It was strange, she has never done this much before. She got fever back up to 102.7 and I treated with tylenol. We didn't get a whole lot of sleep. She woke up and felt ok to the touch. I got everyone up and ready for the day. Then Taylor and I were off to the appt. When we got there and I was carrying her in, she felt warm again. I knew the fever was back. They took her vitals and she was 100.9 but she was still looking ok. We got a room and the docs didn't like that she had to miss her feed and want to know why she keeps having problems. So do we, lol. Right now we don't know if it is the chemo, the virus, the cellulitis, or any of the meds she is taking, lol. They started her on fluids and took her labs. Then she had a case of diarrhea, and I didn't have a change of clothes or anything since we were not planning on a long trip this day.. fun times.
Her counts came back and all of a sudden they are down to 760! That is a huge drop in 24hrs. They don't like that at all, the nurse comes in and says Houston we have a problem. It was very unexpected and now Taylor will have to be admitted. The doc wants to try a diff stronger med for the cellulitis to really make sure it is getting better. The fact that the redness has gone down is not enough proof, because the WBC cause the redness, showing the body is fighting infection. Since her counts are now low, it may be less red because there are not enough WBC fighting. What a crazy case of sick Taylor has going on all at the same time. They started her on the mew antibiotics and I called the hubs to let him know to get packed up so we could switch places for tonight. Right before he and the kids made it up to the hospital, Taylor started coughing a lot more, then her head started turning bright red, half her face too. Her eye started watering and she didn't look very well. Her skin on her arms sort of looked a little yellow too. I was freaking a bit. The nurse didn't like it and shut off the med and went and got the doc and some benadryl. The doc came in and said it was a typical side affect and that next time they will give benadryl before hand. Then, the family was there and it was time for me to go. It was so hard to leave right in the middle of this reaction and her looking all sick. I didn't want to leave. I cried off and on the whole drive home. We got home and we did a eat what you can find night and the kids were pretty good and here I am now updating away. Taylor seems to be doing better and vitals are good, they are finally admitted in a room now. They will take labs again in the wee hours of the morning. Not sure how long she will have to be there.
Showing posts with label feeding tube. Show all posts
Showing posts with label feeding tube. Show all posts
Thursday, 18 July 2013
Saturday, 11 May 2013
Being admitted: low counts
This week was the 2nd dose back at 100% Vincristine. All went well, until Thursday when she stopped eating and at night she started coughing a bit and freaking out a bit like she used to do, enough to have to move her out of her room. Her brother was out of school this week with strep throat and ear infection and baby sister started getting fever and goupy eyes so prolly has some sort of virus. So we kept watching Taylor but she seemed fine fever-wise. Then Friday night she was coughing so bad she couldn't sleep, nor could I. It was horrible. It was so bad she finally coughed up her NG tube and it had to come out. But her fever was only 100.0
This morning I kept watching her. She still had no high fever. She still didn't want to eat. Then, close to lunch she was getting tired, said her ear hurt, and was feeling hot; alas she was 101.8 I finished up somethings, had some lunch and checked again, same thing. So we started getting things ready and calling the Dr. And around 1:30 we were off to the ER to get checked out.
When we got there, we had a room right away, it was nice that they were not busy. This is the first time I have had to run to the ER during the day, so that is something new. Her fever was now 102.2. They say her ears just have a little fluid in them, but nothing looks bad. They did a swab for strep just in case- but it was negative, and of course they took her labs.
Her counts came back really low 460, anything under 500 means that we have to be admitted to the hospital for observation and "quarantine". There go our plans for my sons bday weekend and mother's day weekend. Oh well, such as life. At least Nana is on the way here as we speak... we will need the constant extra help over the next couple days at least for sure. Will update more as I can
This morning I kept watching her. She still had no high fever. She still didn't want to eat. Then, close to lunch she was getting tired, said her ear hurt, and was feeling hot; alas she was 101.8 I finished up somethings, had some lunch and checked again, same thing. So we started getting things ready and calling the Dr. And around 1:30 we were off to the ER to get checked out.
When we got there, we had a room right away, it was nice that they were not busy. This is the first time I have had to run to the ER during the day, so that is something new. Her fever was now 102.2. They say her ears just have a little fluid in them, but nothing looks bad. They did a swab for strep just in case- but it was negative, and of course they took her labs.
Her counts came back really low 460, anything under 500 means that we have to be admitted to the hospital for observation and "quarantine". There go our plans for my sons bday weekend and mother's day weekend. Oh well, such as life. At least Nana is on the way here as we speak... we will need the constant extra help over the next couple days at least for sure. Will update more as I can
Thursday, 21 March 2013
Chemo Week #8
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!
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!
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.
Sunday, 24 February 2013
Weekend #4
Thursday went pretty well. Taylor seemed good most of the day but still tired. That evening she started getting a bit of a fever again so I cancelled my bile study. I also was in dire need of grocery shopping so I got Taylor set up on the feed (on the couch again) and went out after kids were in bed to get the shopping done... I have never spent that much at the grocery store before, wow! It was a much needed trip. We hadn't really been on a full trip in like a couple weeks. When I got home and put everything up, I checked Taylor and she had gotten up to 100.3 again. The hubs and I watched some tv and before we went to bed I checked her again. She was back down! SO happy! She slept great again! I am not sure if its the nutrition, the couch, or what but I like it.
Friday went awesome! Taylor was feeling good; was seeing my little girl again. It was nice to see her personality. She got to play outside today and was so happy about that. She had a lot of fun out there with all of us. Big sister learned how to ride her bike without training wheels today!! Such an accomplishment! We are excited for her. Big brother is practicing baseball for his skills evaluation on Saturday. Little brother is trying to get better at riding his bike too and being safe in the street. It was nice to get out on a nice day with all the kids while the baby napped. It has been a while since we did that. I am SO ready for spring to be here!
Saturday went well too! Taylor had another great night on the couch and the feedings are going well. Although the baby had a bad night of fussing, blah! Taylor is eating a little bit better during the day but I still have to tell her to eat and make her eat. I am hoping this gets better! She got to go on a hang out with Daddy at the park and she just loved that. The other parents were all sweet to Taylor when they saw her and told their kids to let the little girl play. LOL. Last night she slept in her bed and I had to get up like 3 times with her fussing again. I don't get it! Maybe it's her bed that is the problem? Or this is just coincidence? I wish I knew. These past few days you could really see her hair falling out. Pieces of it are all over her clothes and pillow and when you touch her hair they come out. So, I had to start brushing it more so that it would not make such a mess. It is so sad to watch her hair slowly disappear. This morning, I had her wear a hat to church because her hair is really to the point where it is extremely thinned out and uneven and makes her look like a sick kid (that together with the tube in her nose). It is almost to the point where we just need to cut it off. We are ready with lots of hats and do-rags though :)
Friday went awesome! Taylor was feeling good; was seeing my little girl again. It was nice to see her personality. She got to play outside today and was so happy about that. She had a lot of fun out there with all of us. Big sister learned how to ride her bike without training wheels today!! Such an accomplishment! We are excited for her. Big brother is practicing baseball for his skills evaluation on Saturday. Little brother is trying to get better at riding his bike too and being safe in the street. It was nice to get out on a nice day with all the kids while the baby napped. It has been a while since we did that. I am SO ready for spring to be here!
Saturday went well too! Taylor had another great night on the couch and the feedings are going well. Although the baby had a bad night of fussing, blah! Taylor is eating a little bit better during the day but I still have to tell her to eat and make her eat. I am hoping this gets better! She got to go on a hang out with Daddy at the park and she just loved that. The other parents were all sweet to Taylor when they saw her and told their kids to let the little girl play. LOL. Last night she slept in her bed and I had to get up like 3 times with her fussing again. I don't get it! Maybe it's her bed that is the problem? Or this is just coincidence? I wish I knew. These past few days you could really see her hair falling out. Pieces of it are all over her clothes and pillow and when you touch her hair they come out. So, I had to start brushing it more so that it would not make such a mess. It is so sad to watch her hair slowly disappear. This morning, I had her wear a hat to church because her hair is really to the point where it is extremely thinned out and uneven and makes her look like a sick kid (that together with the tube in her nose). It is almost to the point where we just need to cut it off. We are ready with lots of hats and do-rags though :)
Whirlwind
Well, Wednesday after being home for a couple hours, I got a call from someone at Vandy saying that we left without getting any training on the feeding tube and that we really needed to have that so we can make sure it is always in properly before we try to feed her through it. They said it wouldn't take long and they were sorry for the miscommunication but we needed to come back up there. So, the kids and I got ready and off we went.
We got there pretty quickly and were taken back within a few minutes. Then the nurse showed me what we needed to learn and we were out of there in about 15 minutes. It was time for snack so we stopped for a quick bite that we brought with us and then we were on our way home. We were lucky to get out of there before traffic started up! We only hit one patch of it on the way home.
Taylor did good the rest of the day, but she still didn't really eat. At dinner time, the house was a little chaotic and the Lady with the feeding pump showed up to drop everything off and teach us how to use everything. At the same time, the baby started getting fussy. Thank God someone brought us a meal this night, or that really would have been a mad house trying to cook. The lady was really slow and didn't really know the equipment at all. I was figuring it out before she was and that combined with a crazy day, a whiney hungry tired baby, and dinner being put on the table with chatty kids, made for a stress bomb in dear old mom. It was really chaotic. I was starving but had to be with this lady to learn this stuff; but I tried to eat while the lady was doing stuff and talking to me and I went back and forth between food and baby and looking at machine.... it was insane. The other kids were vying for me at times too. Finally the lady left, I got to finish eating, and got the baby fed and in bed... I have never been so stressed in my life. I am not sure exactly why I got like I did, maybe the day after day after day and lack of sleep and load after load of LIFE... but I was so ready to pop; I kept trying to breathe and it just wasn't enough to bring me down. Every little thing was amplified. I had to just get away from people for a bit. On edge was an understatement... I asked friends for prayer and soon after I calmed a bit and got Taylor set up on her first feed. She slept on the couch. Once all the kids were down, I was finally mostly diffused and was able to relax a bit that night. Taylor slept great and the first feeding went great as well.
We got there pretty quickly and were taken back within a few minutes. Then the nurse showed me what we needed to learn and we were out of there in about 15 minutes. It was time for snack so we stopped for a quick bite that we brought with us and then we were on our way home. We were lucky to get out of there before traffic started up! We only hit one patch of it on the way home.
Taylor did good the rest of the day, but she still didn't really eat. At dinner time, the house was a little chaotic and the Lady with the feeding pump showed up to drop everything off and teach us how to use everything. At the same time, the baby started getting fussy. Thank God someone brought us a meal this night, or that really would have been a mad house trying to cook. The lady was really slow and didn't really know the equipment at all. I was figuring it out before she was and that combined with a crazy day, a whiney hungry tired baby, and dinner being put on the table with chatty kids, made for a stress bomb in dear old mom. It was really chaotic. I was starving but had to be with this lady to learn this stuff; but I tried to eat while the lady was doing stuff and talking to me and I went back and forth between food and baby and looking at machine.... it was insane. The other kids were vying for me at times too. Finally the lady left, I got to finish eating, and got the baby fed and in bed... I have never been so stressed in my life. I am not sure exactly why I got like I did, maybe the day after day after day and lack of sleep and load after load of LIFE... but I was so ready to pop; I kept trying to breathe and it just wasn't enough to bring me down. Every little thing was amplified. I had to just get away from people for a bit. On edge was an understatement... I asked friends for prayer and soon after I calmed a bit and got Taylor set up on her first feed. She slept on the couch. Once all the kids were down, I was finally mostly diffused and was able to relax a bit that night. Taylor slept great and the first feeding went great as well.
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!
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