So, we got to the ER and Taylor was whinning in the car and she didn't walk to walk and it hurt her leg when I carried her but I was not about to drag that huge stroller around all over the hospital. So we made it inside and again were told to wait in the conference room, but not even a minute later the nurse came and got us. Vitals were taken and she was up to 103.4. Then with Tylenol it went down to 99.8. They wanted urine, but she would not go. She did not want to move. So many different nurses and doctors came in and out wanting to check her leg/hip pain and find out what was going on. We waited around forever!!! Taylor would never pee, and they needed that test done. While we waited, the doctors were still trying to figure out what was going on. I asked about t just being a pulled muscle and she said that kids don't really get those, it is not common. They think it has something to do with a virus or bacteria. They had her get an ultrasound to help diagnosis. It came back good. They took her blood and it came back good. Later, her fever came back. They were about to give us the antibiotic and send us home like normal, but then the head Doc was too concerned about her odd pain, so she wanted more xrays. So she went for more xrays. They came back good. The doctors had lots of talks about Taylor's situation all night long, lots of different kinds of doctors. They decided she needed an MRI so we were admitted to the hospital at 11pm and she was cutoff all fluids and food.
Taylor was still very tired and didn't want people touching her leg, but of course more ppl came in to do so. An orthopedic doc came and examined her and talked about what could be the problem and why we were getting an MRI. They said it could be sepsis or bone infection. If it was the latter then it would mean surgery to dig the infection out of the bone since antibiotics do not work on those. I did not like the sound of that. We got all comfy in the room and Taylor got antibiotics and pain med and her normal meds. In the morning, it took a while but we finally were told the MRI would be at 12:30. Taylor was really thirsty and hungry and crying because she couldn't have anything. A whole doctor team came in to go over the run down of Taylor. It was neat, like being in an episode of Scrubs; all the docs standing around with their clipboards listening. I was impressed with all the info they went through and nailed. They helped fill me in on their thoughts and plan while they were there. Then more waiting. It was a long wait, but thankfully they got us down like an hour early! That was awesome. My husband met me for lunch while we waited for MRI. She was out within 2 hrs and she wanted her popsicle. We got back to the room and waited on results. No news, was good news because if they saw something bad they would have called while she was still under so that they could do what they needed to do with my permission. It took forever to finally hear anything though.
It took a while, but a couple hours after the MRI Taylor was fully out of it. She was actually feeling better than she was. So that was nice. She ate some snack and watched tv. Her leg seemed a bit better too. We finally got word that the MRI was good. They didn't see what they were looking for. But they did see some inflammation in her muscle. They said that it could be either myolitis (?) which is from like a virus or bacteria stuck in the muscle, or that it is a strained muscle. So it was nothing serious. It would eventually go away. The plan was to give her pain med scheduled regularly to help her.
By the end of the day, she was feeling much better. She was walking around, slowly with limp (a twist in her hip), she was sitting up and talking. She seemed good. We were hoping to go home but the docs said they wanted to watch her pain and see if the fever returned or not. So we had to stay another night. By that night, she was doing so well that the nurse and I decided she didn't need pain med and she went without it. We had a great night's sleep and in the morning Taylor was feeling perfect. Ortho came in at 6 to check her and he said she was perfect and that we should not be here much longer!
At 9am we still hadn't seen a doctor or nurse (besides her vitals being checked).. I mean what is going on? I went to grab some breakfast at like 9:30. Around 11 we finally saw a team of docs and they checked out Taylor and they were going to send us home with antibiotic for her to take but after seeing her they say there isn't really any sign of the myolitis. So she went to have paperwork done up for us to leave. At 11:45 she comes back and says there is a change of plans. She ran into the infectious disease doc and he wants to see Taylor first, because he thinks she should still take the antibiotic. So paperwork put on hold while we waited yet again. They said he should be on the way. While we waited Taylor took a little nap. A while after she woke up, she diarrheaed all over the place. It was a huge blowout mess that called for a change of sheets, clothes, and a sponge bath. Finally, at 1:45 a doc from ID came and checked Taylor out. Then she left to consult with the ID team. I finally ordered Taylor some lunch and I went down to get myself something to eat. I was starving!!! Then, at 2:45 the whole ID team shows up. Taylor was fully herself at this point, wide awake and all over the place. They saw a happy, healthy, silly, energetic 4 yr old. Oh my was she feeling good. They say they want Taylor to take the antibiotic over the next 2 wks since it could be a bacteria causing the problems and they want to be safe. They think the antibiotics are what helped her get better while she was here. So they left and put the scrip in for the med and to get her papers ready so we could be released. We waited around a while for the order so that the nurse could take out her port access. Finally at 4:00 the nurse came to de-access her and we were out of there... Hit the pharmacy at the hospital on the way out and were driving away by 4:20... of course it was traffic hour, and we had to stop at walgreens as well, but we were home by 5:15, just in time to unpack, rest a bit, feed the baby, and have the meal our friends brought us. Now it is time to get her ready for bed, hopefully nothing else eventful happens.
Showing posts with label tired. Show all posts
Showing posts with label tired. Show all posts
Friday, 5 April 2013
Monday, 11 March 2013
Genetics, NG Tube, tummy pain, MRI
Taylor has not thrown up since wed, which is awesome. So I guess that was the end of that bug. Thursday she woke up after an awesome night's sleep hungry and ate a decent breakfast. Then, soon after that she was on the couch all day, really tired and no energy. She took a long morning nap and was a little whiney after and then watched some tv. She kept complaining about her tummy hurting. She took another nap and woke up with the terror nightmare stuff. This one was really bad. It took forever to snap her out of it. It is so hard to watch her like that and also to not to be able to help her much.
Friday she woke up, after another pretty good night sleeping, hungry too! So that is good. But she only ate a little this time. During devo/worship time she danced a little bit. She had a genetics appt today, so it worked out perfect for getting the NG tube put back in. Taylor felt great today. The genetics appt went really well. She was actually scheduled to see the NP today instead of her normal MD, but since all this new stuff is going on, Doc made a trip over from her clinic to see Taylor. The NP was really nice and the Doc was really sweet, checking on how we all were doing. We really like her. There was really nothing much to talk about at this visit thought since we have been going through everything with the tumor and have had many checkups though all that. When they weighed her she was back down to before she gained the weight with the NG tube help. They weighed her without her boots/ She was also an inche shorter? So I am thinking that something is messed up in their calculations from one scale to another. Who knows how much she has really gained or lost. When we were done, we went across the hall (convenient that this doc is on same floor as chemo unit) and waited for the nurse to come get us. It was a bit of a wait (even though I called hours beforehand for them to expect us) but then it didn't take long to ge the tube back in. Again, she hated it of course. They put the tube on the other side this time and it seemed to bother her a bit more than the last one. She kept rubbing it and saying it was hurting. After the first day she stopped rubbing on it so much. Now it is just here and there and no complaining. She ate ok today.
Saturday she woke up after an ok night sleeping. I am wondering if the tube feeding affects her sleep. She wasn't hungry and was not that energetic. She wanted to be with me a lot, so daddy took big bro to baseball practice instead of me. She started feeling more energetic later in the day and played outside for a little bit. She complained about her tummy a lot this day. So, I gave her pain meds and nausea meds to see if either of those would help. She seemed to feel better later, so I guess at least one of them did the trick; not sure which though lol. She ate pretty good part of today. SHe has been scared to go to the bathroom lately. She says it hurts her teetee. Right now I think she is dealing with a small constipation type issue to add to the pain factor down there though.
Sunday she woke up and her tummy was still hurting. She slept ok the night before, no major issues. The time change messed us up a bit and her tummy was hurting so much that we stayed home from church. But the kids and I had a good time watching veggie tales and listening to worship music. Then Taylor stayed sitting with me while I watched our church on tv. I gave her some more meds for her pain. She still doesn't like going potty. I have to keep making her go, but she cries. It is like she isn't potty trained anymore, I am so not wanting to divert to those days, ugh! She finally had some good potty time and she was feeling a little better, not complaining about tummy anymore. She played well today and she ate really good (for Taylor anyway)! She is into sliced cheese and cherries lately.
Today, Monday, is her 6wk follow up MRI. She slept well last night and woke up hungry this morning, although she is not allowed to et today until after the MRI is over :( Of course the one day she can't eat, she wants to. She wants to so bad that she is throwing a fit and crying about it. Poor thing, it really sucks... chemo sucks! Anyway, this morning was crazy. I had to get brother off to school then turn around and come home and get the girls ready because my oldest daughter had an OT appt. All of this in the pouring rain. I didn't even have time to eat breakfast or feed the baby. So, dropped big sis at OT then took the lil girls with me to Starbucks. We ran in and then I realized I forgot the baby bag. So we had to run back out into the rain to get it and go back in. Doing that with a whiney "sick" 4 yr old and an infant carseat and a bad back is no fun. Taylor got some appljuice but then refused to drink it because she was hungry and she wasn't allowed to eat. So she protested and cried almost the whole time we sat there. I bribed her to behave by promising her whatever she wanted to eat and a gift later that day if she could be a big girl and make it through the day. After OT, I had to drop big sis off at a friends house for the day; this was a big help. Then I had a couple of hours at home to get finally get myself ready for the day and relax a bit.
We got to Vandy about 15 min early. I grabbed a subway to eat when I had a chance and then went to check in. They called us back exactly when they said we should be there! Then, they got everything done really fast and had her taken back right on time! So the baby and I went to sit down and eat lunch and that is when I started to update this blog, lol. On hour later, they called to say she was already starting to wake up and to come on back to the room. So I packed everything up and headed down there. She was sleeping when I got there. We were able to rouse her about 15 min later. She woke up and said I want some coffee, LOL! She is too funny! She knew it was now time to eat and drink. So, they gave her some sprite and I gave her some cheetos, then within 30 min of coming out of the MRI, we were out of there! We headed back up to the cafeteria and she got some hot cocoa and a cookie.
She is doing well, still a bit clingy to me all day, but that is expected after an MRI. She ate pretty good at dinner time and now she is chilling before bed. I am guessing we won't hear the results until we go in on Wed. Will update when I can!
Friday she woke up, after another pretty good night sleeping, hungry too! So that is good. But she only ate a little this time. During devo/worship time she danced a little bit. She had a genetics appt today, so it worked out perfect for getting the NG tube put back in. Taylor felt great today. The genetics appt went really well. She was actually scheduled to see the NP today instead of her normal MD, but since all this new stuff is going on, Doc made a trip over from her clinic to see Taylor. The NP was really nice and the Doc was really sweet, checking on how we all were doing. We really like her. There was really nothing much to talk about at this visit thought since we have been going through everything with the tumor and have had many checkups though all that. When they weighed her she was back down to before she gained the weight with the NG tube help. They weighed her without her boots/ She was also an inche shorter? So I am thinking that something is messed up in their calculations from one scale to another. Who knows how much she has really gained or lost. When we were done, we went across the hall (convenient that this doc is on same floor as chemo unit) and waited for the nurse to come get us. It was a bit of a wait (even though I called hours beforehand for them to expect us) but then it didn't take long to ge the tube back in. Again, she hated it of course. They put the tube on the other side this time and it seemed to bother her a bit more than the last one. She kept rubbing it and saying it was hurting. After the first day she stopped rubbing on it so much. Now it is just here and there and no complaining. She ate ok today.
Saturday she woke up after an ok night sleeping. I am wondering if the tube feeding affects her sleep. She wasn't hungry and was not that energetic. She wanted to be with me a lot, so daddy took big bro to baseball practice instead of me. She started feeling more energetic later in the day and played outside for a little bit. She complained about her tummy a lot this day. So, I gave her pain meds and nausea meds to see if either of those would help. She seemed to feel better later, so I guess at least one of them did the trick; not sure which though lol. She ate pretty good part of today. SHe has been scared to go to the bathroom lately. She says it hurts her teetee. Right now I think she is dealing with a small constipation type issue to add to the pain factor down there though.
Sunday she woke up and her tummy was still hurting. She slept ok the night before, no major issues. The time change messed us up a bit and her tummy was hurting so much that we stayed home from church. But the kids and I had a good time watching veggie tales and listening to worship music. Then Taylor stayed sitting with me while I watched our church on tv. I gave her some more meds for her pain. She still doesn't like going potty. I have to keep making her go, but she cries. It is like she isn't potty trained anymore, I am so not wanting to divert to those days, ugh! She finally had some good potty time and she was feeling a little better, not complaining about tummy anymore. She played well today and she ate really good (for Taylor anyway)! She is into sliced cheese and cherries lately.
Today, Monday, is her 6wk follow up MRI. She slept well last night and woke up hungry this morning, although she is not allowed to et today until after the MRI is over :( Of course the one day she can't eat, she wants to. She wants to so bad that she is throwing a fit and crying about it. Poor thing, it really sucks... chemo sucks! Anyway, this morning was crazy. I had to get brother off to school then turn around and come home and get the girls ready because my oldest daughter had an OT appt. All of this in the pouring rain. I didn't even have time to eat breakfast or feed the baby. So, dropped big sis at OT then took the lil girls with me to Starbucks. We ran in and then I realized I forgot the baby bag. So we had to run back out into the rain to get it and go back in. Doing that with a whiney "sick" 4 yr old and an infant carseat and a bad back is no fun. Taylor got some appljuice but then refused to drink it because she was hungry and she wasn't allowed to eat. So she protested and cried almost the whole time we sat there. I bribed her to behave by promising her whatever she wanted to eat and a gift later that day if she could be a big girl and make it through the day. After OT, I had to drop big sis off at a friends house for the day; this was a big help. Then I had a couple of hours at home to get finally get myself ready for the day and relax a bit.
We got to Vandy about 15 min early. I grabbed a subway to eat when I had a chance and then went to check in. They called us back exactly when they said we should be there! Then, they got everything done really fast and had her taken back right on time! So the baby and I went to sit down and eat lunch and that is when I started to update this blog, lol. On hour later, they called to say she was already starting to wake up and to come on back to the room. So I packed everything up and headed down there. She was sleeping when I got there. We were able to rouse her about 15 min later. She woke up and said I want some coffee, LOL! She is too funny! She knew it was now time to eat and drink. So, they gave her some sprite and I gave her some cheetos, then within 30 min of coming out of the MRI, we were out of there! We headed back up to the cafeteria and she got some hot cocoa and a cookie.
She is doing well, still a bit clingy to me all day, but that is expected after an MRI. She ate pretty good at dinner time and now she is chilling before bed. I am guessing we won't hear the results until we go in on Wed. Will update when I can!
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 :)
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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