Home to stay and HAPPY NEW YEAR!

This is a picture from last New Year's Eve. My parents had all of the grandkids stay the night at their house and let all of us adults have an evening together. The kids all had a great time. Avarie is buried in there with her cousins. The other picture is her being silly Christmas night. Even though she does not feel well she still finds ways to let her silliness show through.
We made it home, no unexpected fevers or delays. We are at home. The other kids spent the night at their Grandma's so that we could get Avarie settled in and all of her meds figured out with out distraction. It all went well and we are fairly settled in. The kids came home this afternoon along with Zakk, Avarie's big brother. He is 16 and we haven't seen him since summer. Avarie is very happy to see him and he is so sweet he is so gentle with her. Most 16 year old boys couldn't care less about their younger siblings but Zakk is always so great with all of the kids, they all love him so much. Craig has to work tonight and tomorrow night and so Zakk is helping me with the kids by playing with them and keeping them happy and busy.
The plan for Avarie is for her to remain at home and go back to the Dr's every Tuesday and Friday for check ups. She will be due for chemo again in just a little over 2 weeks and we will be back in the hospital then for that, but until then we will be able to stay outpatients until then.
So far home is going much smoother then it did on Christmas, I think that is because I knew a little more what I was in for. Things seem to be a little bit better although very busy. So my updates may be short for awhile unless there is something big happening.
I hope you all have a very wonderful New Year. We are hopeful for a great New Year. 2009 is going to be a better year then 2008, I am anxious for the new year to begin and leave this year as a memory. I hope 2009 is wonderful for us all. Happy New Year!

Going home for GOOD tomorrow!

Avarie came back to the hospital Friday morning after Christmas to start chemo. Craig was suppose to stay with her through Sunday afternoon and then after church I was going to switch out with him and stay until she was discharged. Avarie had other plans. She was not happy about mommy leaving and she made sure Daddy and the nurses knew it. She was hysterical all night and through Saturday morning. They tried to calm her with some adavan and Benedryl but it just wasn't working. So I switched out early and come Saturday afternoon. I guess she just needed her mommy because she has been ok ever since. It makes me feel good to know that she wants me and loves me because she has a hard time showing that right now. But at the same time I was really looking forward to doing a little more cleaning around the house and going to church Sunday morning. Oh well the cleaning will still be there when we go home tomorrow, it just may be a little more difficult to get to it. We have the kids staying the night at Craig's parents until Wednesday afternoon so that we can get Avarie home and set up and Craig has to work Tuesday night. There is just no way I can take care of Avarie and the other kids on my own. At least not right now, hopefully as I become more comfortable with the meds and wound care things I will become more familiar and confident with everything.
She will finish chemo in the morning and then we will be headed home. Her counts will start to go down in the next few days and by this weekend they should be pretty bad. We are coming back on Friday for a check up. I am keeping a bag packed in my car from now on so that I will be prepared if and when we have to stay again. I have been here long enough to watch how the other family's routine seems to go. They are in and out a lot, usually they are only here for a couple of days at a time and then home for a week or two and then back in for a couple days. I just hope we can fall into that routine instead of the one we have been in.
I talked with the infectious disease control Dr today. He is still pretty skeptical about Avarie having Sweet Syndrome. He says it is just so rare, he has a hard time believing that she could have it, and her presentation has not been typical for Sweet Syndrome. He still feels that it is yeast. But our Oncologist/Hemotologists feel differently. They are encouraged by her improvement since she has started the new medicines. They also point out that if it had been a yeast infection they feel two things would have happened, one her blood cultures that they took everyday would have grown something and two that with all of the intense antibiotics and antifungals that she was on she would not have continued to have breakouts. I did not get a chance to explore that more with the infectious disease control Dr. We all feel pretty strongly that this next week will give us some answers. When her counts go low if it is yeast of some other type of fungal then we should see it spread again. If it is Sweet Syndrome then we should see it continue to improve with the new med and steroids that she is on. Oh yes, she is on steroids again and this time she is actually reacting to them the way we had expected. She is incredibly hungry and finally eating, a lot. We are expecting to take her of TPN tomorrow, that is her feeds that go into her vein. We will continue with the feeds through her nose for now until her nutrition is more stabalized. We tried moving her feeds from through her nose tube to her stomach tube today, that didn't go so well. She is eating a lot and so with the food and the feeds all going into her stomach it was just a little too much for her tummy to try to handle and her tummy became soar and hard. We then moved her feeds back through her nose. The nose tube bypasses the stomach and goes directly into the intestines so that her stomach does not have to try to handle the feeds. She is now a lot more comfortable.
On my Christmas post I neglected to thank all of the people that helped to make our Christmas wonderful. There were many wonderful people that went above and beyond to make our Christmas a happy one and we are so grateful for all of their sacrfice and kindness. It was a wonderful Christmas and there is just no way that we would have had such a fun Christmas if it wasn't for so many wonderful people. Thank you all so much.
I will update once we are home tomorrow and settled. Hopefully it will all go well and hopefully I will be able to get a little cleaning done when Avarie naps or then again perhaps I will nap too.

Christmas

I wanted to post some pictures from Christmas. Avarie had such a great time. I don't think she really whined once, at least not the way she does at the hospital. She enjoyed her brothers and sister so much. It was such a blessing for her to be able to come home, we could all tell how happy it made her. I know this is going to sound corny but honestly that was the best present ever. I loved having my whole family together for that day, minus a very important member, Zakk. We have not gotten to see him yet this Christmas. Zakk is Avarie's half brother he is 16 and she adores him. We are hopeful we will see him this next week sometime, but 16 year olds tend to be busy.
Avarie loved Christmas morning. Carrying her downstairs and seeing her face as she saw the presents. She was so excited and she loved everything. It didn't matter if it was a book or a pack of all of the Princess Barbie Dolls, she loved everything she opened. It was so fun to watch her. She was in such a good mood all day. She sat at the table and played with Addisen and Carter. She sat there for a long time playing pretend. She even ate a little bit of food at dinner time. Of course she claims that nothing taste good any more, but I try not to let that bother me, the Dr's say it is a side effect of the chemo it has altered her taste buds, at least I keep telling myself that every time I try to make her something.
Having Avarie home was wonderful but honestly it took a lot more out of me then I had expected. She is on so many meds and has 4 wounds that need dressings changed twice daily, one of them is an open wound that needs to be unpacked, cleaned and then repacked. The meds start at 8 am and then 3 meds at 9am and then there is another med about every 1-2 hours including IV meds and her tube feedings. There are also her diapers which is quite a chore because she continues to be incredibly soar to even the slightest touch. She can not help with the lower part of her body at all and even taking her socks off of her causes a great deal of pain. We also have to keep a close eye on her temperature, luckily she never went over 100 while she was home. I loved having her here and having my family back together but it was so hard. I hate admitting that, I want to write that it was wonderful and everything went smoothly and it was the best Christmas ever. It was a great Christmas and we did get through everything. If it was just Avarie's care I think I could do it, I would be busy, but I would get through it unfortunately I have three other kids that desperately want my attention and need my assistance too. Then there are meals to try to make and clean up, forget about the rest of the house it just wasn't going to happen. Craig tried to help, but I don't think he realized half of what was going on because, and this was my fault, I didn't teach any of it to him. There really wasn't time, I only learned it right before leaving the hospital and then we were home and in the midst of it. I think he just felt helpless and overwhelmed and the kids wanted Mom to see how all of their new toys worked and all of the cool tricks they can do with those toys. They also like to tattle about every little thing that happened while I was gone, we've had to make a rule that they are not allowed to tell me any of the bad stuff that happened while I was gone unless it involved someone getting hurt. The rule is a work in progress and sometimes Addisen just can't help herself she has to let me know exactly what happened every second I was gone. I honestly would love to be able to just sit down and talk with her and let her tell me all of the good and bad things that happened, but there just isn't time. I have started doing a date night where I let one of the kids stay up late with me, but sometimes that is hard because the evening is the only time I have for myself to try to unwind. I give that up sometimes, but other times I just need that or I am never going to make it through this. I'm trying to reach a good medium.
So to make a long story shorter, I am terrified to bring Avarie home permanently. I don't know how I am going to do it all. I know I have a ton of support around me and I think I am finally over some of my pride issues, at least enough to recognize that I can not do this on my own, I am going to need all of the help anyone is willing to give once Avarie comes home. I know we will get through this, but oh my it is going to be a bumpy road.
One last note, that infection that Avarie has been battling they now think it is not yeast or mold, but something called Sweet Syndrome. It is very rare, the infectious disease control Dr's say they only see maybe 2 cases a year, but that is the latest opinion. The reason is that they have never been able to get any of her blood cultures to grow anything. They are always completely clean with no bacteria or fungus in them. They once got one biopsy that showed yeast, but yeast occurs naturally in the body and since none of the other biopsies have ever grown anything and they do blood cultures daily on her and they have always come back clean too. Yet she obviously has these nodules on her body and kidneys and she runs high fevers almost constantly there has to be something going on. Sweet Syndrome is where the body, for some reason of course they do not know why, collects white blood cells and deposits them around the body. It causes high fevers and rashes and or nodules, it also can cause a lot of joint and muscle pain and weakness. They are attempting to diagnose this right now, but its not a simple grow a culture get an answer kind of test. So I will keep you all updated on that. Honestly I don't know any more about the Sweet Syndrome yet, I haven't had a chance to research it yet. But it seems to fit the little bit that I know.

HOME!!!!!!!!!!!!!!!!!!!!

I am posting from home and my sweet little girl is laying in my bed being silly. She is so happy to be home and the kids are so happy to have her home. They cannot leave her alone and Avarie is loving every second of it. It is a little overwhelming because she has so many meds and I am trying to figure it all out, but luckily my parents came and helped me out this evening. Craig is at work, but will be home shortly and then my family will be complete. We will all be under one roof for the first time in 2 months. This is a great Christmas.
We have to take Avarie back on Friday, but at least we have about 36 hours together as a family.
Merry Christmas to all of you. I hope you all have a wonderful Christmas.

OH NO, NOT AGAIN!

Avarie spiked 104 fever last night and has continued to run fevers through the night. The nurses tell me to not give up hope yet of going home for Christmas, they say there is still a small possibility she could go home for maybe just Christmas Eve through Christmas and then come back, but its only a small chance. Most likely we will be spending Christmas here. I haven't told her yet, she thinks its just the snow keeping us here for now. I am waiting because I don't want her to feel responsible for not being able to go home, its better if she can be mad at something else keeping her here rather than her own body. I am waiting for the Dr to come in this morning and the Dr on this week is one that I know will do everything possible to get us home even if it is only on an overnight pass and not an actual release. I'll keep you all informed as we hear anything. It is good though that the weather kept us here yesterday, it would have been very traumatic for her to have gone home and had to just basically walk in the front door and then walk back out. I am thankful for that. Heavenly Father was definitely looking out for us yesterday on that one.

Almost Home! Just not Today

I have always loved the snow. I can honestly say it has never impacted me negatively. It was always a wonderful thing when school got canceled for snow or work was closed. I have always seen the snow as a fun distraction, but not anymore. I am not a fan of the snow today. Because of the snow we can not get Avarie home today. The reason is that the home health people that are suppose to come in and bring the machines that we take home with us and teach us how to administer her meds and feeds at home could not get in today. There are a couple of other kids here today that are in the same boat. They were also suppose to go home today but can't. We are hopeful for tomorrow, but the roads are not suppose to be any better then today, so who knows when we will get home. I am hopeful for tomorrow, but trying to be realistic.
Craig and I still had to switch places today though. He has to be able to get to work tomorrow, there are people counting on him. My brother, Brandon, was wonderful enough to come and pick me up in his truck with chains and take me to Fred Meyers because I needed to grab a few things for Christmas that I was not going to have another chance to get, and then he drove me here and picked up Craig. Not only that he also took my other kids for the night and possibly the next two nights because Craig has to go to work and everyone is snowed in and not able to get to my house and stay and then get home after. Craig doesn't get off until 10:30 pm. Brandon is a good brother and my sister in law, Becky, is wonderful because she has a newborn baby and 5 other kids, yes they have 6 kids, and they still took my 3 kids. They are either crazy or extremely wonderful, I'm pretty sure a little of both, haha just kidding they are wonderful people.
The nurses are all angry for me at the home health people, so I am just trying to stay optimistic and I am trying to not hate the snow, but I'm not seeing the same beauty in it today that I saw before.

Preparing for Home

Avarie thought she was so funny in these pictures. Grandma Foushee brought her some ornaments shaped like snowflakes that had the cutest little saying on them and Avarie decided to make them into earings and wear then. She was very silly that day. She stuck her finger up her nose and then laughed so hard at herself. It was so funny to see her do something like that, I had to take a picture of it and post it. Sorry if anyone finds it gross.It was on Thursday when she was feeling really good.


The Dr's are moving ahead with their plans for Avarie to come home on Monday. Although I am concerned about the weather. If it doesn't let up I am not sure we will be able to get her home. For anyone reading this that is not in the Portland Metro Area, we are experiencing an "Arctic Blast". That is what the news stations keep calling it. We have over 8 inches of snow on the ground right now and freezing rain is just moving in to the area and we are expected to get anywhere from 1/4 inch - 1/2 inch thick of ice covering the ground when the freezing rain is all done and then we are expected to get more snow on top of that for the next several days. AAHHHHHHH!!!!!!! I want to bring my baby home. We have studded tires on our van, but I don't think that will do much on those kinds of streets. My brother has a 4x4 with chains, and has offered to help, but honestly I am concerned about that. Avarie has enough problems, I don't want to put a car wreck on top of it. Some how this will all get figured out and we will get her home.
I was lucky enough to get out this morning quickly so I could pick up a couple of things that we are going to need for her at home, like diapers and pillow covers.
She will be coming home with a lot of machines. There are home health nurses that will be coming and teaching us how to use the machines and administer her medications on Monday (if they can get through). They are suppose to actually be going to the hospital to teach us but I don't know if we are taking the machines home with us from there or if they are delivering them to our house, that part was a little confusing.
Avarie will have to go back into the hospital on Friday for her next round of chemo. This round is a 4-5 day stay and then as long as she is doing ok and there are no new infections we can take her home again. I was at the hospital long enough to see how other peoples routines go and I realize that we will be spending a lot more time there then I had hoped. I see certain families coming and going a lot. It just takes the simplest of fevers or viruses to put us back in there.
On Friday Avarie had the endoscopy and they did find some erosion of the stomach lining, which is basically some pre-ulcers. The only thing they can do for that is to put her on Prilosec for the stomach acid. If anything the throwing up has probably caused the erosion and not the erosion causing the throwing up. So we still don't have any answers as to why for the last 2 1/2 weeks she throws up everyday, usually 2-3 times a day. It doesn't matter if she is eating or not, she can go days without food on her stomach and she still throws up. I'm frustrated to not have an answer to this one, but I know she is only home for a few days, so we can address it again at the hospital this next week if the problem is still there.
They also put in the "button" on Friday. That is a feeding tube that goes directly into her stomach through the outside of her stomach rather than down her nose. She still has the one in her nose for now because they made that one go longer then her stomach. Instead of the one through her nose ending in her stomach and feeding her stomach it goes through her stomach into her intestines and puts the food directly in there. They were hoping that it would ease the irritation on her stomach lining and hopefully help her not throw up any more, so far that has not been the case, but it was worth a try.
This little video of Avarie was from Thursday night when she had such a great night. The video was from the end of night as she had started to settle down a little, but she was still happy. She was doing so good that night, but having the "button" put in on Friday has set her back a little right now, but I now know that she is still in there. Avarie is still inside that sick little body. We have upped her pain medicine to help her feel better. Having her do so well that night that she was "overdosed" a little on Fentanyl helped us see that we have not been giving her enough to help her completely recover. She is now on more and as she recovers from the "button" procedure she will emerge again. Anytime she has a procedure done she emotionally shuts down for awhile.