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 :)
Sunday, 24 February 2013
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!
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.
Sunday, 17 February 2013
Weekend #3
After posting the last blog, Taylor (still whiney a bit) fell back asleep. She took a good nap and woke up feeling a little bit better. She wanted a bath and I said she could have one after she eats. Then at dinner time we got her to come and eat a little bit. As she sat there, she complained about her tummy and threw up in her plate. SO, it was off to the bath we went. All of a sudden she felt much better. She went potty on her own without being whiney or needing me or anything. And in the tub she played and pretended to swim and had a grand old time. I let her play for a while in there since she was feeling so good. After a while she finally realized it was getting cold in the water and she jumped out. She got in her jammies and was like a popsicle. I wrapped her up on the couch to warm her up. She slept really good that night! Thank the Lord!
Friday morning, she woke up and was feeling good. She ate some breakfast without me making her. She played off and on throughout the day. And she slept great again Friday night. She was fever free all Friday! Saturday, she woke up well also. We were out cleaning the garage and she wanted to play outside. So she rode her bike around the driveway for a bit. It was cold so I didn't let her stay out for too long of a period at a time. For lunch we were able to to a break and go to a local Cafe that just opened. Taylor did well while we were out and she was able to nibble on her lunch. I wish she would have eaten more though.
Last night wen wel also. She again slept all night. It has been so nice not having her wake up constantly crying and complaining about her tummy or freaking out. Praise the Lord! She did come in our room in the middle of the night however. She has still been complaining about her tummy too. Last night me and my son started having scratchy throats. This morning mine really didn't feel good and the baby was letting me sleep in so I decided we should watch church from home today. That little bit of extra bedtime was much needed for me. Taylor was whiney this morning but ate her breakfast! The kids watched tv for a bit and then we turned on church. It was at this point that Taylor had curled up on the couch next to me. Soon after church started she fell asleep. So, I figured she much not be feeling well again.
She woke up when it was over. She was whiney and didn't want any lunch. I checked her and she had low fever, 99.3... a little later it was 99.8. It stayed there for a while as she rested on the couch all day watching tv and playing the kindle or just sitting in my lap. She has been sipping on her pediasure, but thats about it since breakfast. I took her temp again a bit ago and it was 100, then 100.3. I was thinking and praying, hopefully it will stop there and retreat. I just took it again and it is now between 99.4-99.8 So I guess either way, it seems to be going down. Hopefully that is the case. Will shall see...
Friday morning, she woke up and was feeling good. She ate some breakfast without me making her. She played off and on throughout the day. And she slept great again Friday night. She was fever free all Friday! Saturday, she woke up well also. We were out cleaning the garage and she wanted to play outside. So she rode her bike around the driveway for a bit. It was cold so I didn't let her stay out for too long of a period at a time. For lunch we were able to to a break and go to a local Cafe that just opened. Taylor did well while we were out and she was able to nibble on her lunch. I wish she would have eaten more though.
Last night wen wel also. She again slept all night. It has been so nice not having her wake up constantly crying and complaining about her tummy or freaking out. Praise the Lord! She did come in our room in the middle of the night however. She has still been complaining about her tummy too. Last night me and my son started having scratchy throats. This morning mine really didn't feel good and the baby was letting me sleep in so I decided we should watch church from home today. That little bit of extra bedtime was much needed for me. Taylor was whiney this morning but ate her breakfast! The kids watched tv for a bit and then we turned on church. It was at this point that Taylor had curled up on the couch next to me. Soon after church started she fell asleep. So, I figured she much not be feeling well again.
She woke up when it was over. She was whiney and didn't want any lunch. I checked her and she had low fever, 99.3... a little later it was 99.8. It stayed there for a while as she rested on the couch all day watching tv and playing the kindle or just sitting in my lap. She has been sipping on her pediasure, but thats about it since breakfast. I took her temp again a bit ago and it was 100, then 100.3. I was thinking and praying, hopefully it will stop there and retreat. I just took it again and it is now between 99.4-99.8 So I guess either way, it seems to be going down. Hopefully that is the case. Will shall see...
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.
Wednesday, 13 February 2013
Chemo Day 3
Today was harder than last time. Taylor had to sleep in our bed last night because she woke up freaking out again. The poor thing was just too loud to stay in her room. We eventually had to move her to the floor again because of her wigglyness and fussing. She went back to her room at some point in the night. She woke up early with her brother and I. And since she said she would eat, I let her get up and she ate some muffins! She mentioned later how she didn't want to go to the Dr and she was sad about it. Then when we left, she whined in the car all the way there almost. I did remember the numbing cream this time! So that is good. But man it was a fight to get that on her. She is so afraid it will hurt her.
I got to the hospital and realized I forgot the nausea med. Then, we learned when we got taken back that the nurse gives her some right before the Chemo. So we are good. I just need to make sure to give her next dose to her before she goes to bed. We went in the room to get her tube in and immediately she started crying and I had to hold both her hands and hold her down in the chair. She was screaming bloody murder and wiggling to get out. The nurse finally got the port in and it was no big deal. Taylor calmed right down; maybe she realized that the cream I gave her was good and it helped and she will be better next time???
She has lost like around a pound since starting chemo; this is not good for her. A nutritionist came and spoke with us. They gave us samples of pediasure 1.5 and told us some tips and gave us a diet sheet for if she were to get sick or have low #'s. Her numbers are good again this week, so we have not had to deal with that yet! We talked to the Dr about her sleep problems and whether it is nightmare related or pain related or this other condition with her feet. He says some of the meds are known for nightmares but hers are not; they can cause it but are not known for doing so. Well, um I think that is what is going on here Doc. We talked about the pain med and he said if we can't find someone til fill it, we can get it at the hospital. We will get on that and see if that helps her sleeping. Taylor really needs to get some better sleep and so do I. She is too young to really tell me what is going on and it makes it so frustrating that I can't help her properly.
The teenage girl we met the first week again came with a gift for Taylor. This time it was from her friends ont he cheerleading squad. They heard about Taylor and wanted to send her notes, a blanket, and some chocolates. That was so sweet! We talked with that family for a bit, which was nice. I got to ask her about if she had tummy pain, nightmares, sickness, etc. It was cool to hear from someone else going through the exact same thing at the same time who could vocalize what it is like. That was so helpful. We are blessed to have them around.
It was really busy in there again. We had to wait a little for a seat to be cleaned up for us. Then the getting of the chemo went fine. Taylor was a little tired but she played games and had some cheetos for a snack. When it was time to get the tube taken back off, she did not cry. She let the nurse do it and she was brave!!! So happy about that!
When we got home this afternoon, a lady from the homeschool co-op came by and dropped off some gifts for all the kids. The service project class kids once again did something. They all gathered toys for each kid and made a gift bag for them. There was also a little something in there for the whole family to help with going to the hospital. We don't feel we deserve all this special stuff. People are so kind and helpful. It is so cool to see God move through his people and bring us blessings. The kids loved it all. It is funny because my kids are supposed to be in that class learning how to give and serve others but we have not been able to do it this semester. We look forward to being a part of it one day!
I got to the hospital and realized I forgot the nausea med. Then, we learned when we got taken back that the nurse gives her some right before the Chemo. So we are good. I just need to make sure to give her next dose to her before she goes to bed. We went in the room to get her tube in and immediately she started crying and I had to hold both her hands and hold her down in the chair. She was screaming bloody murder and wiggling to get out. The nurse finally got the port in and it was no big deal. Taylor calmed right down; maybe she realized that the cream I gave her was good and it helped and she will be better next time???
She has lost like around a pound since starting chemo; this is not good for her. A nutritionist came and spoke with us. They gave us samples of pediasure 1.5 and told us some tips and gave us a diet sheet for if she were to get sick or have low #'s. Her numbers are good again this week, so we have not had to deal with that yet! We talked to the Dr about her sleep problems and whether it is nightmare related or pain related or this other condition with her feet. He says some of the meds are known for nightmares but hers are not; they can cause it but are not known for doing so. Well, um I think that is what is going on here Doc. We talked about the pain med and he said if we can't find someone til fill it, we can get it at the hospital. We will get on that and see if that helps her sleeping. Taylor really needs to get some better sleep and so do I. She is too young to really tell me what is going on and it makes it so frustrating that I can't help her properly.
The teenage girl we met the first week again came with a gift for Taylor. This time it was from her friends ont he cheerleading squad. They heard about Taylor and wanted to send her notes, a blanket, and some chocolates. That was so sweet! We talked with that family for a bit, which was nice. I got to ask her about if she had tummy pain, nightmares, sickness, etc. It was cool to hear from someone else going through the exact same thing at the same time who could vocalize what it is like. That was so helpful. We are blessed to have them around.
It was really busy in there again. We had to wait a little for a seat to be cleaned up for us. Then the getting of the chemo went fine. Taylor was a little tired but she played games and had some cheetos for a snack. When it was time to get the tube taken back off, she did not cry. She let the nurse do it and she was brave!!! So happy about that!
When we got home this afternoon, a lady from the homeschool co-op came by and dropped off some gifts for all the kids. The service project class kids once again did something. They all gathered toys for each kid and made a gift bag for them. There was also a little something in there for the whole family to help with going to the hospital. We don't feel we deserve all this special stuff. People are so kind and helpful. It is so cool to see God move through his people and bring us blessings. The kids loved it all. It is funny because my kids are supposed to be in that class learning how to give and serve others but we have not been able to do it this semester. We look forward to being a part of it one day!
Tuesday, 12 February 2013
End of wk 2
Quick update... things have been pretty good. She is still off and on complaining about her tummy hurting. The pain med scrip I was given was not available at our pharmacy for some reason. So I have not shopped it around yet. I am trying to decide how needed it is. She is still waking up crying from time to time but she is overall sleeping better. I sometimes find her coming in our room at night. Sometimes she stays all night and other times she goes back to her bed. She is also not fully eating but she is way better. She is eating every day and last night she even asked for seconds.
Today I noticed her eye getting watery and she was flinching it a lot. It looked like it was bothering her. I asked her and she said it hurt a little. It looks like it is bulging out more and it looks like the coloring around the eye on the face is a little off but maybe I am just seeing things. She is rubbing it more often too. She has an appt w opth next Tues so we can find out then. I have never seen her eye get so watery like that.
She has had no more fever or vomiting. She has no constipation, she may not go every day but she is actually more on the loose side. Her hair still looks normal. She doesn't look sick. She plays a lot still. Of course she has lots of whiney baby type moments though now. And of course she is your typical 4 yr old. OH and she has mentioned a couple times that her feet hurt. So, I am watching that.
She got to go to church this week. Her friends were so happy to see her. And the teachers are so sweet and miss her and care so much about her. She did well, no problems.
We have not tried going out to a restaurant again yet. That whiney fit was too much last time.
Chemo Day 3 is tmrw!
Today I noticed her eye getting watery and she was flinching it a lot. It looked like it was bothering her. I asked her and she said it hurt a little. It looks like it is bulging out more and it looks like the coloring around the eye on the face is a little off but maybe I am just seeing things. She is rubbing it more often too. She has an appt w opth next Tues so we can find out then. I have never seen her eye get so watery like that.
She has had no more fever or vomiting. She has no constipation, she may not go every day but she is actually more on the loose side. Her hair still looks normal. She doesn't look sick. She plays a lot still. Of course she has lots of whiney baby type moments though now. And of course she is your typical 4 yr old. OH and she has mentioned a couple times that her feet hurt. So, I am watching that.
She got to go to church this week. Her friends were so happy to see her. And the teachers are so sweet and miss her and care so much about her. She did well, no problems.
We have not tried going out to a restaurant again yet. That whiney fit was too much last time.
Chemo Day 3 is tmrw!
Saturday, 9 February 2013
Chemo #2 Aftermath
Wed night I had to kick Taylor out of our bed because she was so squirmy. She was not happy with me. I put her on the floor and she protested, but of course she eventually fell asleep there. Again, she was in and out throughout the night. She woke up at one point and wanted to go in her bed. She promised to not fuss and cry. So away she went. She did awesome. Also, she never "got sick".
Thursday morning she was feeling good. She occasionally complained about her tummy throughout the day. She ate decent for Taylor all day long (which doesn't say much though, lol). She played and has a great day. I had another night out, which was nice. A little bible study with a couple friends. That night she slept pretty well in her own bed. She did the waking up thing a few times but nothing too bad.
Friday morning she woke up feeling good as well. It was another great day; with just a bit of complaints. However, she did not eat very well at all. I had to constantly stay on her to get her to eat. She did so well today that I got to catch up around the house. I got SOOOO much stuff done. It felt so nice to be able to do that. The energy was nice (thanks to some wonderful Advocare SPARK, catalyst, and thermoplus). Friday night was a different story. She again was waking crying a lot. She came in and laid on my floor again. Also, the baby was up like every hour or something wanting her pacifier. So between the two of them, I was up at least once every hour all night long!!! Blah!
I tried sleeping in a bit this morning, which didn't really work all that much. But the little bit I did was nice. Then, I started the day off with a bang making everyone a healthy breakfast. I was able to gain back the energy from the previous day, which was cool despite how tired I was during the night and when I had to get up. Today Taylor started off whiney. She was talking about her tummy a lot again. She also didn't want to eat. I had to bribe her to get her to eat breakfast, snacks, lunch, and dinner. She did finally eat all those, but not a whole lot. I got her to take a nap today but when she woke up she went crazy crying again. It took forever to calm her down. She was very whiney and clingy for quite a while. She had some good moments today too though. Then, she went to bed without a hitch tonight; out superfast. Hopefully she sleeps well!
Thursday morning she was feeling good. She occasionally complained about her tummy throughout the day. She ate decent for Taylor all day long (which doesn't say much though, lol). She played and has a great day. I had another night out, which was nice. A little bible study with a couple friends. That night she slept pretty well in her own bed. She did the waking up thing a few times but nothing too bad.
Friday morning she woke up feeling good as well. It was another great day; with just a bit of complaints. However, she did not eat very well at all. I had to constantly stay on her to get her to eat. She did so well today that I got to catch up around the house. I got SOOOO much stuff done. It felt so nice to be able to do that. The energy was nice (thanks to some wonderful Advocare SPARK, catalyst, and thermoplus). Friday night was a different story. She again was waking crying a lot. She came in and laid on my floor again. Also, the baby was up like every hour or something wanting her pacifier. So between the two of them, I was up at least once every hour all night long!!! Blah!
I tried sleeping in a bit this morning, which didn't really work all that much. But the little bit I did was nice. Then, I started the day off with a bang making everyone a healthy breakfast. I was able to gain back the energy from the previous day, which was cool despite how tired I was during the night and when I had to get up. Today Taylor started off whiney. She was talking about her tummy a lot again. She also didn't want to eat. I had to bribe her to get her to eat breakfast, snacks, lunch, and dinner. She did finally eat all those, but not a whole lot. I got her to take a nap today but when she woke up she went crazy crying again. It took forever to calm her down. She was very whiney and clingy for quite a while. She had some good moments today too though. Then, she went to bed without a hitch tonight; out superfast. Hopefully she sleeps well!
Wednesday, 6 February 2013
Chemo Day 2
So she went all day yesterday without eating anything! She still had only the itsy bitsy bowel movement as well. Last night she was able to sleep in her own bed, which was nice. She still woke up a few times crying and fussing but for the most part was not too loud or long and she was able to calm herself. I did find her on my floor this morning again though. She was feeling good this morning. She ate some breakfast. She also had diarrhea all morning. Fun times! It seems she was not constipated after all. Her stomach has probably just been hurting due to the chemo and there really isn't anything we can do about that.
The kids and I left for the hospital and it was pretty busy this morning. Every time we go, they need to access her port for all the meds and for blood work. Well, they have to stick a needle in it to do that... they gave us this numbing cream to put on her before each visit so that it doesn't hurt so much. Well, I forgot about the cream this morning. Bad mommy! There are so many things to remember to do, ergh. But they used a numbing spray to help, even though it is not as effective. Taylor hates them accessing her port. It hurts. Poor thing! It took a while to get in a room and then after telling the Doc all about how Taylor is doing, they decided they need to get an xray of the tummy to make sure nothing is going on. So we had to go downstairs for a bit to get that. We were in and out of the xray room in like 20 min and back upstairs. We had more waiting around and then they let us know all her labs and reports came back fine and that nothing was obstructing her stomach. Though she did have a lot of gas. They said the miralax should be stopped and that it was probably causing the gas since she had so much yesterday. Finally it was chemo time, and that hour went by pretty fast. About maybe 20 min into it, Taylor started complaining about her tummy hurting. That seems like confirmation of the chemo making her tummy hurt. But other than a complaint here or there, she did great. While we were there the kids and I played 3 games of candy land, watched some volunteers do a science experiment, played other games, (I) caught up on words with friends, and they watched tv. The Doc gave us a real prescription for the magic mouthwash and some pain medicine. Those will come in handy. By the time we were done, it was 1:40 and we were starving for lunch. So we grabbed some food in the food court. Taylor also ate snack and a little bit of lunch today. So that is good. And then we were off.
She is still complaining of her tummy here and there. She ate a small dinner and played and watched tv. Soon after she went to bed, she was awake crying again. Ugh, I was hoping she would be okay tonight. We gave her the nausea medicine this morning and this afternoon. So she has not thrown up at all, which is good. This waking up thing is so weird. it is almost like she keept having nightmares. She starts screaming out something and crying and moaning and wiggling. Sometimes even scratching her legs or something. Sort of like she is hurt and/or scared or all itchy or something. Sometimes it is small outburts, and other times big outburts. Sometimes it us just really quick and others long and drawn out where I need to tend to her. It is not fun for anyone... poor thing. I can't imagine what she feels like. Once again, I moved her to my bed to spare the other girls from being awakened.
All in all, things are okay. We are making it through everything without major problems. Hopefully this week is less eventful than last.
The kids and I left for the hospital and it was pretty busy this morning. Every time we go, they need to access her port for all the meds and for blood work. Well, they have to stick a needle in it to do that... they gave us this numbing cream to put on her before each visit so that it doesn't hurt so much. Well, I forgot about the cream this morning. Bad mommy! There are so many things to remember to do, ergh. But they used a numbing spray to help, even though it is not as effective. Taylor hates them accessing her port. It hurts. Poor thing! It took a while to get in a room and then after telling the Doc all about how Taylor is doing, they decided they need to get an xray of the tummy to make sure nothing is going on. So we had to go downstairs for a bit to get that. We were in and out of the xray room in like 20 min and back upstairs. We had more waiting around and then they let us know all her labs and reports came back fine and that nothing was obstructing her stomach. Though she did have a lot of gas. They said the miralax should be stopped and that it was probably causing the gas since she had so much yesterday. Finally it was chemo time, and that hour went by pretty fast. About maybe 20 min into it, Taylor started complaining about her tummy hurting. That seems like confirmation of the chemo making her tummy hurt. But other than a complaint here or there, she did great. While we were there the kids and I played 3 games of candy land, watched some volunteers do a science experiment, played other games, (I) caught up on words with friends, and they watched tv. The Doc gave us a real prescription for the magic mouthwash and some pain medicine. Those will come in handy. By the time we were done, it was 1:40 and we were starving for lunch. So we grabbed some food in the food court. Taylor also ate snack and a little bit of lunch today. So that is good. And then we were off.
She is still complaining of her tummy here and there. She ate a small dinner and played and watched tv. Soon after she went to bed, she was awake crying again. Ugh, I was hoping she would be okay tonight. We gave her the nausea medicine this morning and this afternoon. So she has not thrown up at all, which is good. This waking up thing is so weird. it is almost like she keept having nightmares. She starts screaming out something and crying and moaning and wiggling. Sometimes even scratching her legs or something. Sort of like she is hurt and/or scared or all itchy or something. Sometimes it is small outburts, and other times big outburts. Sometimes it us just really quick and others long and drawn out where I need to tend to her. It is not fun for anyone... poor thing. I can't imagine what she feels like. Once again, I moved her to my bed to spare the other girls from being awakened.
All in all, things are okay. We are making it through everything without major problems. Hopefully this week is less eventful than last.
Tuesday, 5 February 2013
End of Week 1
the rest of Sunday was okay... she kept complaining about her tummy. We had a bunch of finger foods for dinner during the superbowl and she had some stuff on her plate, but I don't think she really ate much of anything. I gave her a bath and let her watch tv in my bed. Then I just let her sleep there because she was whinny again. I planned on moving her when I went to bed. However, she kept waking up crying again and I did not want her to wake up the baby so I just let her stay in our bed. She was so fussy and her tummy is bothering her so much. I figured it was from the constipation, so I went to the store and got an enema for her. I gave that to her and that helped a little bit but didn't seem to do what is was supposed to. I also gave her some Motrin thinking maybe that may help her pain. I am not sure if those things were bad for her or not, but she needed something; I mean she is in pain. After those, we laid down together and she fell asleep and stayed asleep all night from what I know.
Monday we had to skip out on co-op again due to her tummy problems. She did not eat breakfast, but at snack time she did have a pack of mini poptart snacks. Then at lunch I got her to eat a piece of bologna. All day she complained about her tummy. She also started itching in places and has some white dry looking patches on her skin in different places. She took a nap today and even woke up from that crying and screaming. She can't seem to sleep very long without waking up in pain. She also kind of freaks out and wants me right away and I need to calm her down. She had a little bit of a vanilla milkshake at snacktime. She did not eat for the rest of the day, but she is still drinking her carnation chocolate drinks with miralax in them. Not as much as she needs to, but she is drinking. I hope that dairy isn't a bad thing to have a lot of when on chemo. She is not complaining about her mouth as much which is good. But she is still afraid things will hurt her mouth, so she is hesitant about eating and drinking much else. She is already severely underweight, like 28 lbs and just turned 4. So, I hope she doesn't loose too much weight with this chemo treatment and her not eating. That won't be good.
I contacted the nurse by email and asked about her tummy pain and explained all that was going on. They said that chemo patients should not get enemas (good to know), and said substitute of the colace pill was fine to be giving her. She also stressed that we need to really make sure to get enough miralax in her. We are trying, believe me. This email interaction did not answer all my questions, but we will be there Wednesday and I will have a lot to talk about then.
That night she went to bed in her room and I went out for a much needed Girls Night Out with a friend. When I got home she was awake and worried about where I was. She had also woken the baby and she was crying. I got the baby back to sleep and took Taylor into my bed again and calmed her down. Then told her I would be back in a bit. A little later I came to bed. She kept moving around and whining and crying and wouldn't stop. Why did she do so well the night before and now doing so poorly. Ugh!!! I finally had to kick her out of our bed and she slept on the floor, protesting of course, but she finally fell asleep. She went the whole day without a bowel movement once again. But she is also not really eating, so not sure how bad that situation is? I guess we will find out.
This morning I had to get up and get our youngest boy off to school. Again, I felt like a zombie. My face felt numb, I was so tired. I got him to school and when I came home Taylor was up looking for me and came and hugged me. She is so afraid lately of me being gone for some reason. She normally isn't like this. It is dinner time now, and she has not eaten all day long!!! She is on her third cup of carnation drink though, so that is good. We decided to go out for lunch today as a family, to get out. I mean, Taylor is fine except for her tummy hurting so it shouldn't be a problem. Well, while we were there, soon after sitting down she started complaining. She didn't want to eat, her tummy hurt, she wanted to go home, etc. She wanted to sit in my lap the whole time. Yet I had to feed the baby and I had to eat, so I needed my arms a lot of the time. She got mad at me and went to sit by daddy. But she kept whining and crying and saying she wanted to go home. She then came back to sit with me and at the end of the meal I took her to sit on the motorcycle in the arcade. She had some fun playing on that for a few minutes as my hubs wrapped up the check. We got home and after watching a little tv, she put herself down for a nap. Not too long after, she woke up crying again, she was freaking out and my oldest daughter said Taylor needed me. She was crying so hard, scared that I wasn't home. I had to sit with her and hold her to calm her down. She woke the baby who was also napping. Then The baby needed attention. Taylor wouldn't let me tend to the baby, she just kept freaking out. I had my daughter help out again, but I finally had to just let her get over it because I needed to deal with the baby. Poor thing, you know how sick kids are... They want their mommy, lots of attention, and to be held all the time. They are so needy and as a mom it is hard not to help them all you can. I hope the whole next year is not like this. I am not sure how I will be able to juggle everything at every moment. It has been a chore to get this blog done, but I know it's important. It helps me keep track of what's happening and it can help others who are in this place and want to know what to expect.
Tomorrow is the 2nd day of chemo...
Monday we had to skip out on co-op again due to her tummy problems. She did not eat breakfast, but at snack time she did have a pack of mini poptart snacks. Then at lunch I got her to eat a piece of bologna. All day she complained about her tummy. She also started itching in places and has some white dry looking patches on her skin in different places. She took a nap today and even woke up from that crying and screaming. She can't seem to sleep very long without waking up in pain. She also kind of freaks out and wants me right away and I need to calm her down. She had a little bit of a vanilla milkshake at snacktime. She did not eat for the rest of the day, but she is still drinking her carnation chocolate drinks with miralax in them. Not as much as she needs to, but she is drinking. I hope that dairy isn't a bad thing to have a lot of when on chemo. She is not complaining about her mouth as much which is good. But she is still afraid things will hurt her mouth, so she is hesitant about eating and drinking much else. She is already severely underweight, like 28 lbs and just turned 4. So, I hope she doesn't loose too much weight with this chemo treatment and her not eating. That won't be good.
I contacted the nurse by email and asked about her tummy pain and explained all that was going on. They said that chemo patients should not get enemas (good to know), and said substitute of the colace pill was fine to be giving her. She also stressed that we need to really make sure to get enough miralax in her. We are trying, believe me. This email interaction did not answer all my questions, but we will be there Wednesday and I will have a lot to talk about then.
That night she went to bed in her room and I went out for a much needed Girls Night Out with a friend. When I got home she was awake and worried about where I was. She had also woken the baby and she was crying. I got the baby back to sleep and took Taylor into my bed again and calmed her down. Then told her I would be back in a bit. A little later I came to bed. She kept moving around and whining and crying and wouldn't stop. Why did she do so well the night before and now doing so poorly. Ugh!!! I finally had to kick her out of our bed and she slept on the floor, protesting of course, but she finally fell asleep. She went the whole day without a bowel movement once again. But she is also not really eating, so not sure how bad that situation is? I guess we will find out.
This morning I had to get up and get our youngest boy off to school. Again, I felt like a zombie. My face felt numb, I was so tired. I got him to school and when I came home Taylor was up looking for me and came and hugged me. She is so afraid lately of me being gone for some reason. She normally isn't like this. It is dinner time now, and she has not eaten all day long!!! She is on her third cup of carnation drink though, so that is good. We decided to go out for lunch today as a family, to get out. I mean, Taylor is fine except for her tummy hurting so it shouldn't be a problem. Well, while we were there, soon after sitting down she started complaining. She didn't want to eat, her tummy hurt, she wanted to go home, etc. She wanted to sit in my lap the whole time. Yet I had to feed the baby and I had to eat, so I needed my arms a lot of the time. She got mad at me and went to sit by daddy. But she kept whining and crying and saying she wanted to go home. She then came back to sit with me and at the end of the meal I took her to sit on the motorcycle in the arcade. She had some fun playing on that for a few minutes as my hubs wrapped up the check. We got home and after watching a little tv, she put herself down for a nap. Not too long after, she woke up crying again, she was freaking out and my oldest daughter said Taylor needed me. She was crying so hard, scared that I wasn't home. I had to sit with her and hold her to calm her down. She woke the baby who was also napping. Then The baby needed attention. Taylor wouldn't let me tend to the baby, she just kept freaking out. I had my daughter help out again, but I finally had to just let her get over it because I needed to deal with the baby. Poor thing, you know how sick kids are... They want their mommy, lots of attention, and to be held all the time. They are so needy and as a mom it is hard not to help them all you can. I hope the whole next year is not like this. I am not sure how I will be able to juggle everything at every moment. It has been a chore to get this blog done, but I know it's important. It helps me keep track of what's happening and it can help others who are in this place and want to know what to expect.
Tomorrow is the 2nd day of chemo...
Sunday, 3 February 2013
1st Weekend
Thursday, the day after Chemo started, went really well... She woke up early and came in our room on the floor. When we finally "got up" she threw up a little bit but then felt fine. She ate breakfast and played and was doing awesome. That night we realized she hadn't pooped yet and so we needed to go ahead and start with the stool softener and Miralax they prescribed for constipation that can come with chemo. We didn't start these meds right away because Wed night she had very loose stools almost like diarrhea Weird how one day it can be that way and then the next day all stopped up. I tried to give her the liquid Colace; she had a sip and she hated it and wouldn't touch the stuff. So, hmm... what to do. I let it fly tonight and just gave her the Miralax in her drink. Anyway, the rest of Thursday was great besides that.
Friday she woke up and the day started great! She ate breakfast and drank. She played and had fun. Then around lunch time she started slowing down and she wouldn't eat and would complain off and on about her tummy. She was drinking her drink, but slowly. I still hadn't figured out what to do about the stool softener. By mid afternoon she started screaming about her mouth hurting and she would not eat or drink anything. It was like it was burning in her mouth. Nobody warned us about potential mouth pains or what to do about them. And she was not very energetic, which is odd for her. Around 4pm, I felt her and she seemed warm, so I got her temp. She had a little bit of a fever, 99.1. So I monitored it every 20-30 min. Next it was 99.9.... and then 100.3. That seemed to be rising quickly. The doctors had said that if she gets 100.4 or higher, then we have to take her up to the hospital. I was like, ugh! Not what wanted to do on a Friday night, especially after this busy crazy week. So I FB a prayer request about the fever and mouth and people were all over it. Then, I quickly took a shower and got ready in case we had to run up to Vandy. Our friends brought us our dinner and Taylor still had not pooped, she was dealing with fever, and she still won't drink or eat anything. Ugh!!! I got some answers from friends about a magic mouthwash to make with Benadryl and Mylanta. So, my husband went to the store and got the stuff to make it and we tried it. It seemed to help a little bit. She was able to drink some. But it was bed time and would have to wait to find out more the next day. When she went to bed the fever was down to 99.7!!! So happy!
Saturday, she woke up with no fever! PTL! What a blessing. Her mouth was still hurting though, so we tried the mouth solution again. It worked and she was able to drink some but still wouldn't really eat. She still has yet to poop. Later, I decided to give her a stool softener pill I had since she won't take the medicine she was given. I taught her how to swallow a pill and she did awesome. She says, I like the pill. The rest of the day she played well and had a good time. She would complain off and on about her tummy hurting or her mouth hurting. I got her to eat a little lunch by promising to take her to spend some of her bday and xmas money. She ate a small piece of pizza and all her chocolate milk (carnation drink). She also ate some of her dinner, some baked zitti a friend brought over for us. She was still complaining about her mouth and her tummy though. I gave her more mouth stuff another pill and she was drinking her drink with Miralax okay as well. Though, she still hadn't pooped. We took the kids shopping and they had fun. It was nice to get out and do that. She went to bed and soon after, she woke up fussing. We still are not exactly sure why. But our guess is from her tummy hurting. It woke the baby so I had to put her to sleep in our room. Taylor kept waking up whining and fussing but was like half asleep and said she didn't know why she was crying and didn't need anything. I finally turned off the monitor in the girls' room and got some decent sleep.
This morning, she woke up a little early and said her tummy hurt. I said she needed to go potty and she needed to eat at breakfast time. She tried to potty, but still nothing. But she kept trying to go every once in a while. I gave her some more mouth stuff. Yet again, she would not eat breakfast, but did have some of her drink. I decided we needed to stay home from church because we needed to deal with her constipation. While we were watching church online, she finally was able to go potty! Woohoo! She was hungry for snack but her mouth was still hurting from the food. So, since her carnation drink was okay for her, I decided that a smoothie might be a good idea to give her. It would be some good healthy food and would be cold and might not hurt her mouth. So for lunch I made her a strawberry peach smoothie with soursop juice, yogurt, honey, and vanilla almond milk. I had a taste, it was awesome! She really liked it and it didn't hurt her mouth! Woohoo! She had a good amount of it. So other than her tummy and mouth still hurting here and there, she is doing well today.
Friday she woke up and the day started great! She ate breakfast and drank. She played and had fun. Then around lunch time she started slowing down and she wouldn't eat and would complain off and on about her tummy. She was drinking her drink, but slowly. I still hadn't figured out what to do about the stool softener. By mid afternoon she started screaming about her mouth hurting and she would not eat or drink anything. It was like it was burning in her mouth. Nobody warned us about potential mouth pains or what to do about them. And she was not very energetic, which is odd for her. Around 4pm, I felt her and she seemed warm, so I got her temp. She had a little bit of a fever, 99.1. So I monitored it every 20-30 min. Next it was 99.9.... and then 100.3. That seemed to be rising quickly. The doctors had said that if she gets 100.4 or higher, then we have to take her up to the hospital. I was like, ugh! Not what wanted to do on a Friday night, especially after this busy crazy week. So I FB a prayer request about the fever and mouth and people were all over it. Then, I quickly took a shower and got ready in case we had to run up to Vandy. Our friends brought us our dinner and Taylor still had not pooped, she was dealing with fever, and she still won't drink or eat anything. Ugh!!! I got some answers from friends about a magic mouthwash to make with Benadryl and Mylanta. So, my husband went to the store and got the stuff to make it and we tried it. It seemed to help a little bit. She was able to drink some. But it was bed time and would have to wait to find out more the next day. When she went to bed the fever was down to 99.7!!! So happy!
Saturday, she woke up with no fever! PTL! What a blessing. Her mouth was still hurting though, so we tried the mouth solution again. It worked and she was able to drink some but still wouldn't really eat. She still has yet to poop. Later, I decided to give her a stool softener pill I had since she won't take the medicine she was given. I taught her how to swallow a pill and she did awesome. She says, I like the pill. The rest of the day she played well and had a good time. She would complain off and on about her tummy hurting or her mouth hurting. I got her to eat a little lunch by promising to take her to spend some of her bday and xmas money. She ate a small piece of pizza and all her chocolate milk (carnation drink). She also ate some of her dinner, some baked zitti a friend brought over for us. She was still complaining about her mouth and her tummy though. I gave her more mouth stuff another pill and she was drinking her drink with Miralax okay as well. Though, she still hadn't pooped. We took the kids shopping and they had fun. It was nice to get out and do that. She went to bed and soon after, she woke up fussing. We still are not exactly sure why. But our guess is from her tummy hurting. It woke the baby so I had to put her to sleep in our room. Taylor kept waking up whining and fussing but was like half asleep and said she didn't know why she was crying and didn't need anything. I finally turned off the monitor in the girls' room and got some decent sleep.
This morning, she woke up a little early and said her tummy hurt. I said she needed to go potty and she needed to eat at breakfast time. She tried to potty, but still nothing. But she kept trying to go every once in a while. I gave her some more mouth stuff. Yet again, she would not eat breakfast, but did have some of her drink. I decided we needed to stay home from church because we needed to deal with her constipation. While we were watching church online, she finally was able to go potty! Woohoo! She was hungry for snack but her mouth was still hurting from the food. So, since her carnation drink was okay for her, I decided that a smoothie might be a good idea to give her. It would be some good healthy food and would be cold and might not hurt her mouth. So for lunch I made her a strawberry peach smoothie with soursop juice, yogurt, honey, and vanilla almond milk. I had a taste, it was awesome! She really liked it and it didn't hurt her mouth! Woohoo! She had a good amount of it. So other than her tummy and mouth still hurting here and there, she is doing well today.
Subscribe to:
Posts (Atom)