Friday, December 31, 2010

Fevers, Fevers, Fevers!

Aubree is not doing better, in fact she is doing worse. After chemo she has no immune system so anything can attack her, even the bactiria on her own skin. Last night Aubree came down with a fever. I think it ranks up there with one of the most nerve racking nights yet. Her temperature slowly crept up, and I knew that it was not going to go down. But the nurses couldnt do anything until it was offically a fever. I sat there with her, just holding her, she didnt feel good enough to really fall alseep on her own, and she cried all night in her sleep anyway. It took about 3 to 4 hours for her fever to creep up and all I could do was hold her and know what was coming. It was the worst feeling, I was completely helpless. There was nothing that I could do. I was scared for her, she wouldnt eat, not that she has been eating all that well before, but at least we could get her to eat a little, but now she wont eat at all. All she does is sleep. Gone are the smile and the laughs, if she is awake all she does is cry or lay there, she does still look out the window but she wont even hold up her own head. She has started antibiotics and that should help her to fight off whatever it is that she has, and hopefully she will feel better in a day or two.

Wednesday, December 29, 2010

Today was a rough day for Aubree. She is not feeling good at all. The side effects from the chemo take about 10 days to kick in, and I think that they finally are here for her. She hasnt been really eating well the last couple of days and i feel so bad. Today we ordered her some pancakes and she was so excited about them, but wouldnt eat them. Its not because of nausea, she has none of that these days, it almost seemed like the easy part because we controlled it so well with drugs, but she has sores in her throat and in her intestines. They have been explained to me as something like a cold sore. So this makes her not feel very good, she did ok for my mom this morning but most of the afternoon she wouldnt even play. She loves her window in her room, we will stand there and she will watch all the cars and people come and go. We stood there for a couple of hours today. I also started her on pain medication every 4 hours, I am even willing to wake her up at night to give it to her, I think she feels that bad. She also received platelets today, her count got down low enough that they felt ok giving them to her, her red blood cells look good and I dont think that she will need them for awhile, it would be awsome if she started making her own before she needed more, but I wont hold my breath for that at all!
Its so weird to think that when I got here with her at the beginning that it was so hard trying to make decisions for her about her medication, and now its almost second nature. I never would even think about being one of those demanding parents of the nurses and Dr's. In fact I would never use my call light to call the nurse, I would stick my head out the door to see if they were busy. Now I always use my call light, and I don't care if they are busy if Aubree needs something. I can tell I am changing in this way also because today I was really irritated that they were thinking of maybe giving platelets to here when I thought that for sure they needed to. I am not so quick to just go with the flow anymore. Its just crazy how quickly it changes, and to think that was only 2 months ago. But I have found that it doesn't change everything, when we first got Aubree's diagnosis I was really good about praying, but now with things not new anymore, I find myself thinking have I prayed today. I thought for sure that being here in the hospital that it would be second nature to always pray and do those things for me, to help me keep the spirit, but I have found that when you get use to a situation that you have to always be mindful of doing those things. Got to run Aubree is awake!

Monday, December 27, 2010

Here we are back in for round two of chemo, we have actually finished round two of chemo. It was 8 days this time instead of 10, and we feel so lucky, Aubree did awsome. She has yet to have many side affects and feels pretty good. She is back on to a regular sleeping and eating schedule and that makes my life a lot easier. The only thing is that she has a hard time going back to sleep at night when she is woken up so I have spent many nights in the rocking chair because I will fall asleep before she does. Also when she was on chemo there was one that made her blood pressure just go so low, so I had many sleepless nights just laying there listening to make sure that she was still alive. I had visions in my head of her bottoming out and never recovering. I am really tired from it, but it is over this round and sleeping in the rocking chair does help stretch out my neck and help with the tension headaches so maybe its ok that I sleep some part of the night in the chair! HA. We are know in count recovery, her numbers were at 0 today and so we will wait for them to start their climb back up, so we can do it all again. We were told that we are going to have 3 rounds of chemo, I was hoped it would only be 2 since her bone marrow biopsy came back but becaus of her monosomy 7, her mutation of her cancer cell, we will have 3. We will then go to bone marrow transplant. Its so hard playing the waiting game and I wish I could just go home for recovery, but then I would have to play nurse mom, and I didnt do that so well last time. I remembered to give her all of her meds, but I was chaning her central line dressing. When you change it you are suppose to let the alcohol dry on her skin then put the bandage on and I wasnt doing that. Since I didnt do this her skin turned fire man red and was really painful. I am really scared to have to change her dressing agian and have not had to do it yet, but I am sure the nurses are going to make me start doing them again. But at least I will have supervision to help me and I know that I have to let her dry first, so maybe it wont be so bad this next time.
I am doing good, its been really lonely this time around, and not so hectic. Aubree also goes to bed at 6 pm and I have from then till I go to bed by myself. I dont want to wake her up so I dont make phone calls or do anything that makes noise. I do have some friends that are coming back to start their chemo and I am so excited for that because I can go talk to them when I have a minute and that has been really nice. The nurses are really great also, the take pitty on me and take time to talk even though I am sure that they have a million other things that need to get done before they can go home. I have been so impressed with the nursing staff that is here, there has not been one bad nurse yet, ok well maybe one that I didnt like to much, but still a good nurse.
Aubree with her crib all the way up, she is moving so much that we have to put up her crib rails at night so we know she wont get out.

Aubree loves her bumbo and this toy that plays music

This was Christmas day at our house. My Mom and Dad came up and helped out. My Mom did her usuall duty at the hospital so that I could come home and open presents with the other two. They had so much fun! We had a family that did Christmas for us. We felt so blessed to have help this way. They went above and beyond what we could hope or ask for!




Thursday, December 23, 2010

A Great Friend












I have a friend that does has her own photography business. She came to my house and took picture for me, since we couldn't leave the house. She took pictures of Aubree and I wanted a family picture with Aubree in it, because you never know what will happen. I would regret the rest of my life if I said that she was going to make it and never got a family picture with her and then she didnt make it. So during our stay home, my friend Missy came to my house and in my kitchen set up a photo studio and took family pictures as well as pictures of each child. You can check out her work at www.2gphotography.blogspot.com she is awsome! Thank you Missy so much! We are forever in your debt for taking these pictures!

Update

Nelson and Aubree hanging out
My "bedroom" and christmas tree

Aubree eating in her crib


We have been in the hospital now for a week, and Aubree has been getting chemo everyday. We have one more day this round, she is done at 6 AM tomorrow morning. Such a nice Christmas present if you ask me! She has been doing amazing this round, it helps that she came in healthy! Her side effects have been hardly none, she has been nauseated but we have been able to control that with three different medications alternating every 2 hours, so I think this has helped for sure. She has not had to be on as much pain medication this time also, we will see as time goes on and different side effects are more prone to show up. Some take over a week to show themselves. Her counts should start to drop and she will loose her energy as her red blood cells die off. Hopefully count recovery goes as well as the chemo portion went. The nurses love her so much around here. She is so happy all the time when they come in and she loves to play with them. I think she gets sick of just having mommy around all day long and wants to look at someone else, even the baby in the mirror is more exciting than mommy!



I have had to start feeding her solids here in the hospital. This is new from the last time, we could barley get her to breastfeed. But how do you get a child to start eating solids in the hospital? Its so weird, we have a bumbo chair with a tray, and we set it in her crib. You also have to fight with the hospital about what she can eat. The feel that children her age should only eat baby food. Aubree wont eat baby food, she wants real food. I think she has an oral aversion to having me put big plastic things in her mouth, so she wants just the food. I have had to fight to get her real food, but we finally made some headway and we are able to get somethings for her to eat. She also gets all of her play time in her crib, with all of her lines she cant do anything on the floor but just lay there, so if she wants to play she has to do it in the crib. I feel bad because its not to big in there and she gets her feet caughting in the rallying all the time. In a few days she should be able to be unhooked from all the pumps and then she will be able to play on the floor. That will be a great day!



The nurse just walked in with Aubree's blood counts and she is on her way down! They dont think that she will need blood till Monday and platelet's for another week. Awsome, hopefully she wont take to long to come back up! Till next time.......

Wednesday, December 22, 2010

A new blog


I have decided to start a new blog. There are many things that go on in my mind and I need a place to put them. We are so thankful for caring bridge and what it brought to us, but I think that having this kind of blog will be better for me to really voice what I am feeling and need to say. Also I need to think about what the last 2 months have brought me and I want to record what has happened and how I have been feeling, so once agian this will be the place for all of that. So have fun reading, I can say its going to be anything interesting to anyone but me, but I need it out there.