Aubree's Movie

I made this movie while I have been home this time. I have found it very therapeutic, as I think about what lays ahead of Aubree this next round. Its going to be very difficult. I found out today they may not even let me nurse her anymore. This has been very hard for me to think about, and I hope that I will still be able to. I will find out next week for sure. Home has been great, we have a lot of Dr visits, and next week there are so many more, but sleeping in our own beds has been awesome. Thank you for all the support that has been given! We have gotten this far, and we will make it through the next part, but I think its going to be the most difficult part yet. So please keep praying her, bless her heart she has been through more than any child should ever have to go through. She is a fighter, and our Angel. She shows me everyday to smile even when you don't feel good. I think any nurse that has taken care of her can attest to that!

We are HOME!

We came home yesterday! It took forever to come home, but it was so worth it. The Dr's came by and said that her monocites were going up and she had an ANC so we could go home. We were really surprised because Saturday they said it would be 4-5 days before we were going to be able to go home. After we were told we could go home, we realized that she had an antibiotic due at 2 and that home health would never be able to get the medicine out to us in time. So we had to wait for her to get that before we could go home. Then when the nurse tried to give her her medicine in one of her lines, it wouldnt work. It had a clot in it. Thankfully she had two lines, so one got the antibiotics in it and the other a really strong anticoagulant in it. Usually it takes an hour or so to get them working but it took 5 hours! We just wanted to go home! Its so weird because it seems that we always take forever to get out of there, but I see people leave at 10 AM. I dont know how they do it! So we are home, we are still on two antibiotics, and this time we are using a pump for one that runs over 2 hours. Its a pretty straight forward pump so I am feeling comfortable to get it. She also has a number of other meds that she is on. I had to upgrade from a basket holding her stuff, to a box. I feel so bad that she has to take so much, but its all necessary. I can only imagine what she is going to be on when we come home next time! But we wont think about that we are going to enjoy being home. I was able to go outside today and visit with some of my neighbors and it was just so nice to feel normal and not have the nurses as my source for conversation!

update

Aubree is doing well, she still is getting fevers on and off. She has gone almost 24 hours without one, and that is really exciting. They did take her off of one antibiotic today that was really hard on the kidneys, so that means she can be taken off fluids during the day. We are hoping that will help appetite and she will start to eat again. She will still nurse but its not a lot, and I worry about weight loss since that seems to be a big thing with the Doc's. We also found out that the bacteria that caused her infection was the bacteria that is found on the skin. Its just crazy that something like that can make her that sick. So hopefully we will go home soon! She still does not have an ANC, but every other number came up so any day she will have one and we hope it shoots up so that we can go home! I am really tired of being at the hospital and I think about the bone marrow transplant and my bum starts to hurt because I know that I am going to spend weeks in the rocking chair holding Aubree! We are told that most likely she be admitted for her transplant on March 1 or 2. Its not set in stone yet but that is what they are looking at. It will be sometime that week. We start Dr appointments for it on Tuesday with Nelson Leland, so its becoming a reality here very fast! We are going to have a fast for both of them on Sunday the 27th of Feb. for anyone that would like to join us!

Doing better

Aubree is doing much better today. She started to play a little and she is eating a little. The antibiotics are kicking in and she should be feeling completely better here in a couple of days. So we are waiting for her numbers to go up and then we can go home. After talking to people about Aubree's situation, I know realize just how bad it was. The Dr kept saying to me, the cultures grew in just 6 hours??. She asked me this a couple of times. I talked to a nurse about this and they said that it usually takes a couple of days for cultures to grow. Also I didn't realize it, since I was delirious from not having any sleep, but she went down hill with in only an hour or two. This was probably because of the fast growing bacteria. I am so grateful for the nurses that we had that night. We had a nurse from the surgical floor who did an amazing job taking care of her, even though she doesn't usually take care of these type of patients. Also our charge nurse did an excellent job on getting the help that was needed that morning. I know this is weird but I am really grateful that PICU was full that morning and so they couldn't send us down for a couple of hours. Because of this they were able to stabilize her in ICS. It worried me to be in PICU because there are so many sick kids there that could have got Aubree sick. I am thankful that we are at a hospital with such excellent nurses and Dr!!

Fever

The night before last Aubree came down with a fever. It was quick and wicked. About 9:30 pm I noticed she felt warm, but it wasnt a "real" fever, but it still worried me. By 10:15 she had a fever and blood cultures were drawn. It is standard to draw blood cultures with fevers with children like Aubree. She got worse as the night went by. At 7 AM our room was a zoo, she had so many medical personal in there. They decided to call the rapid response team from the picu (pedeatric icu) to come and evaluate her to see if she needed to be transfered. We also had the oncology docs there checking things out and about 4 nursed doing different things and answering questions that came up. Her condition was, she had wide spread blood pressures, like 120/30. She also had a pulse of 225, normal for her is 130. Also they could not get her fever to come down and she sat in my lap wimpering and shivering. I felt so bad for her, but they were able to give her fluids, but they gave her a lot of fluids, it was something like 60 ounces in like an hour, it was some crazy amount, they gave her more fluids than they usually allow on the ICS floor, but that is what she needed. They were able to keep her stable up on the ICS floor, but all day it was talk about how she was on the line and if she got worse she would be sent to PICU. Today we are still on the ICS floor and I am so gratefull that we are. She still has fevers but a second blood culture that was drawn 12 hours after the first showed that there was no more bacteria in her blood. They got on it way fast and were able to help her little body fight it off. Now its just time till she gets better. She is on the up and up.

Some thoughts

This round of chemo has been very difficult for me. Nelson and I had some questions about the bone marrow transplant and so against my better judgment I went out looking for the answer. In the process I came upon blog after blog of children who have passed. This consumed all my time and thoughts. I started looking at Aubree as if she had no chance at all. This weighed heavily on my heart, and if you can imagine it made time up here very rough. I dont know why, I didnt even know these people, and every case really is its own despite what the stats are. I am doing much better, Nelson gave me a priesthood blessing and I am doing so much better, in fact I have done a 180 and I know look to the future with Aubree, I know that she will make it. But my heart hurts tonight as I read a blog of a patient that I do know. She was the family that I watched as her sister gave her bone marrow to save her sister. I talked to her mother about the procedure as I myself was going to have to do the same thing. I do not know what has since happened with this family, but my heart goes out to them. I am so thankful for the love of our Heavenly Father and all that he does for us. I am so grateful for priesthood blessings that make going through this so much easier. I am thankful for the peace that the spirit brings, for the spirit that is here in this hospital. I am just so thankful for the love of everyone around me, and the support that is given to me on a daily basis by wonderful parents and siblings. I one day wish to be with them in eternity. I have learned how fragile life is, and at any time it can be ripped from us. For this reason I am grateful that I have the beliefs that I do, that no matter what happens, I will be a forever family.

www.prayforari.blogspot.com

At 0 FINALLY

Aubree in her activity center playing with her favorite toy, a syringe!

Aubree's ANC today has finally dropped to 0. It seemed that it took forever, and I wasnt sure it was going to happen. It may not be a bad thing because she is suppose to start coming up soon, so her numbers may have protected her from getting to sick. She does have a little cold, but it doesnt seem to be getting worse and we hope it stays that way. The bone marrow doc's came by today finally and that was good, I was able to get some answers to my questions. But it seems that when her numbers are at 500 they want to start the chemo for transplant 2 weeks after. They dont want to go much after that so it seems that we will be really busy with tests for both Nelson and Aubree along with teaching for Nelson and me. I think we will have a week at home with nothing I hope but it sounds like we will be busy with stuff during our break.