BMT Day +17

Today's daily picture is brought to you by our family Water Polo Team #17.... Love you Austin, Sadie and Jaxon. (Not so sure little Jack liked having that cap on his head)

WBC- 0.9
Hemoglobin- 8.2
Platelets- 22
ANC- 0.5 (2nd day in a row of 0.5, one more day and she gets a walk in the hall.)
Weight-53.9

What a long and miserable night. I think lots of times I get so busy blogging about the good in each day that I forget to mention the not so good. We'll today's post is not a real great one. I guess we are bound to have those kind of days. Last night about midnight or maybe closer to 1:00 a.m. our nurse was in our room. She had quietly came in, and I am not joking when I say that. The nurses around here (well most of them) are so great when they work the night shift to be extremely quiet. It is almost like they tip toe in and do their stuff and tip toe back out. The doors here are very loud when they shut and because the rooms are filtered and sealed really well the doors shut very loudly. But most of the time the night nurses will pull the door closed quietly and hold the handle so you do not even hear it shut. Well last night was the same, we had a great nurse on. I had not even heard her come in, when I looked up and there she was. She was in doing her stuff, changing IV's, giving more meds, etc. Well at this point in our journey Ariauna is on a ton of medicine. Antibiotics, narcotics for pain, medicines so she does not reject the transplant, meds to help protect her liver, meds to help protect her from getting GVHD, TPN and Lipids and the list goes on. So the nurse is quietly doing her thing when suddenly Ariauna starts saying some really weird things. She was carrying on a full conversation and none of it was making sense. She made some comments like mom that package right there has both of our names on it. I asked her what package and she said the one right there (remind you there was no package). This went on for quite awhile and was really starting to disturb me. I was seriously really worried if my sweet angel was slipping away, or into a comma, or if she was talking to people on the other side (people who have previously passed away). I was seriously freaking out. I tried to wake her, I tried to calm her down and nothing was working. It was one of the scariest, weirdest feelings I have ever had. I think it was even freaking the nurse out a bit and she asked me several times if Ariauna had ever done anything like that before. She finally stopped and calmly went back to sleep. Well to say the least, I don't think I slept much the rest of the night. I was so worried about her. About 4:00 a.m., I am sure just minutes after I had finally fallen back to sleep in comes the nurse with the night time doctor. The nurse was so worried about it, that she had gone and woken the doctor up and told her what happened and she came in to exam her. We talked for a bit about it and the weird things she was saying. She actually made Ariauna wake up a bit and she did a full blown exam on her. The exam went rather well, until Ariauna started having an attitude about opening her eyes. The doctor needed to exam her eyes to see if they were dilated or not. Ariauna would not open them, and then it was a war. Finally the doctor told Ariauna she would not leave and quit bugging her until she did it. Finally Ariauna opened her eyes enough that the doc could look at her eyes. The doctor said she looked really well and if she was really worried about it, she would send her down for a CT scan of her brain to make sure there was nothing serious. So they are assuming it was just a severe case of her hallucination. I sure hope I do not ever have to witness some one doing that again. While we are on the subject of things not going so well, let's just say it how it is. Ariauna is continually spitting. I don't think I have ever seen a kid spit so much in my entire life. I feel so bad for her, but her mouth, throat and stomach hurt so bad from the mucusitis sores, that she does not swallow anything, even her own saliva. She is not talking at all, she shakes her head and points to things. She is in a lot of pain from the mucusitis, and because of all the medicines she is on, she tends to try to sleep a chunk of the day. The rounds for today went pretty well. They are slowly going to try to start decreasing the Ativan. I think they just want to get them down to as little medicines as they can. At least not giving them medicines now just because, because a lot of times they may not still need them. They are also starting her on a multi vitamin, which means they were able to take the vitamin out of the TPN they were giving her. They are also going to take her TPN (Total Nutrition IV) down to 20 hours now instead of 24. Yay!! Today when Physical Therapy came in, Ariauna had a big attitude. She was trying to get Ariauna to play with her. Ariauna said she wanted to play hockey so the therapist went to get it, but then when she came back, Ariauna would not get up out of  bed. Then she burried her head in the bed and would not give the therapist the time of day. The therapist and I both counted and told Ariauna if we got to three the therapist would leave. So we got to three and the therapist went to leave and Ariauna freaked out and didn't want her to leave but then when we tried to get her up, she wouldn't get up. It seemed like it was a big game Ariauna was trying to play. We tried again and Ariauna did the same thing. This time the therapist looked at me and said I think I better stick to what I said and she walked out. Ariauna cried for 20 minutes about it and I tried to explain that we gave her numerous chances. Our day did not start off so great. About 10:00 some friends we met through the Chidester's came to see us, Amy, Tuesday and baby Elsie. Amy's husband helped give Ariauna a blessing and we were invited to their home, that is how we met Tuesday. Tuesday lives with Amy and her family, she is here from England and is going to school. Tuesday was a nurse in England but to be a nurse here in the United States, she has to do more schooling. Tuesday lives with them and helps them with their children. She reminds me of a Nanny, but is also going to school too. They are a very sweet family and Tuesday just adds to it. For any of you that know Ariauna really well, you know she loves babies, or pretty much anyone younger than her. We had a great time at Amy's home and Ariauna loved playing with baby Elsie. Amy and Tuesday asked if they could come visit and bring baby Elsie to help cheer Ariauna up. I checked with the hospital and as long as everyone is healthy and the baby was caught up on her shots they could come. It was a huge surprise to Ariauna, and it definitely made her day. Ariauna got to hold Elsie and play with her and then she watched Tuesday feed her cereal to her.

 Amy and Tueday brought us some fun gifts. Tuesday is quite the seamstress and made these cute American Girl doll clothes for Ariauna's doll Kit. Ariauna was super excited and it put a huge smile on her face. She also brought Ariauna a set of jax and told her all about playing jax when she was a little girl. They had also put together a fun package for me of yummy snacks and then Amy had canned pears and done some peach jam and brought me a jar of each.

They stayed for about an hour to visit. It was good to have some company come see us. The doctor's are still trying to get Ariauna's platelets up to 30 so they gave her another platelet transfusion this morning. Of course they pre-medicated her with Tylenol and Benadryl. The Tylenol they make her take by mouth and of course she threw it right back up. Poor girl. We also had another set of visitors today, Amy Gould and her friend Becky came today and brought Ariauna the American Girl Doll puppy "Pepper" and it's carrier set. It was so sweet of them and we enjoyed visiting with them too.

Also this morning Amy the Child Life Specialist came back in to play the long version of the Twilight Scene It game. She had promised Ariauna she would come back today and play the longer version. Ariauna had an absolute blast playing with Amy.

Shortly after Amy left, one of the Care Partner volunteers came around to work a little bit with Ariauna. They are doing a study right now at the hospital comparing how much better children do when they will get up and play a little bit with one of the volunteers. Beth was the volunteer today and we have actually had Beth before when I needed someone to sit with Ariauna, and Ari really liked her. Today Beth brought with her some crafts and they spent time making a bookmark.

We got a really fun package in the mail today from the Langfords. Ariauna was so excited that she ripped right into the box. They sent me this really cute saying about God not giving me anymore than I can handle. it is a really cute quote. They also sent Ariauna the "A Child's Prayer" song's for bedtime, a F-R-O-G lip gloss (Fully Rely On God), and a Choose the Right rubber ring and we both got a really cute card. Thank you Langfords for the beautiful package. We both absolutely loved it, and with the day I had, I turned that CD on tonight to help Ariauna calm down and relax as much as I needed to hear those songs too. That CD couldn't have came on a better day.

Ariauna laid down and took a nap, but then of course she had not been asleep long when the Ocupational Therapist came in to work with her. They ended up waking her up to play some Zoomba. Ariauna really likes to play it. She started out standing for a while but then got really tired so the therapist let her sit down to play it for awhile.

After therapy it was time to get Ariauna all taped up and in the shower. This was just the beginning of a long and teary night. Ariauna was starting to get an attitude and when I say attitude she was just down right mean to me. I know, I know I am an adult and should be able to handle a little bit of an attitude from a nine year old little girl. Just for a reminder I did not sleep much at all last night. She had a pretty good day for the most part. I had to fight her pretty much every time it was time for medicines, but her attitude really came out when it was time to get in the shower. She did not want to get in the shower. The rule on the BMT unit is they have to shower every day while they are doing chemo/radiation and otherwise they can shower every other day. It was the day to shower and she was not going to do it. We argued back and forth about it, she finally cooperated (barely) to do it. In other words, she was not helpful before, during or after the shower. Then came time for medicines again and it was literally a kicking and screaming fight. She was not going to take them. I counted and she would not take them for me so I went out and got the nurses and she was kicking and screaming at them. I was about to lose my cool in front of everyone. The bad part of this is, there are some meds they can let sneak by here or there, but there are other one's that help her body not reject the transplant and those she has to take and unfortunately they do not come in an IV form. She kept arguing and fighting so I told her again she could either do it willingly like a nine year old or I would have to hold her down. By this time she had herself so worked up and upset that I knew exactly what would happen and sure enough... I with the help of the nurses held her down, gave her meds to her and then she threw them right back up. Ugh!!  So then we got to do it again.  Ariauna was still yelling and screaming at me and I was on the verge of tears. I am physically and emotionally drained. I know this is the hardest thing in the world for this little girl and I know the steroid medicine she is taking can really mess with their moods. I feel so bad, because I know this is not my normal Ariauna, but how do I continue to deal with it, be happy when she is being so mean and violent. I told Ariauna I thought I needed to go for a walk and she needed some alone time and it would probably be good for both of us. Then she freaked out even more and was now crying, screaming, and yelling at me. I finally grabbed my wallet and told her I was going to get my dinner. Normally I would go and get my dinner and come back to the room and eat in the room with her. I pretty much cried all the way to the cafeteria and back. I went back up to the 4th floor and I just couldn't go back in to the room yet. So I ended up staying just outside the BMT unit in the parent room and ate my dinner in peace and quiet. I felt guilty the entire time, but I knew if I did not get a little bit of a break, I was going to lose it....I did not want to cry in front of her and I didn't want to be mean, rude, or be upset because I know a lot of what is happening is not her fault.  It is so hard to explain because I do not like the little girl she is behaving like, but at the same time I really can not blame her. She is going through hell right now, her body is fighting so hard to make and keep new little cells, she is tired and worn down and she wants to rest, yet everyone keeps coming in and out of her room waking her up to make her get up and exercise. I know one of the main side effects of steroids is mood change so I know a lot of her attitude is being caused by the medicines. However, all of these reason's do not make it much easier when you are the one caring for her every waking second and up sometimes 16 times a night (remind you with a smile on my face every time I get woke up in the night). I know part of my issues are that I am just physically and emotionally drained. It is times and moments like these that I wish Jerry and I could be here together tag teaming this like a lot of the other families around here are. I finally went back from eating my dinner and Ariauna was sound asleep. I got ready for bed and went out to fill up my water bottle. I had been crying most of the evening. I ran in to one of our favorite nurses who immediately saw me and said she was so sorry and she didn't know how I lasted this long without breaking down. She had seen earlier how Ariauna was acting and said most parents have had melt downs and pity parties long before now.  We'll I will admit, this was definitely my pity party day. I talked with the nurse for a few minutes and she just again said how normal Ariauna's behavior is and that this whole ordeal is just hard on everyone including little Ariauna and her body. I came back in the room, got my phone and called my mom. I just needed to have a good little cry with my mom! My mom immediately knew something was wrong. I just cried and cried and told her I was having a pity party and I just needed her to listen to me.  My mom being the wonderful person that she is, said all the things I needed to hear. She told me how wonderful I am, what a great mom I am, that I am one of the strongest people and she said so much more. But it was all exactly what I needed, a little boost to keep me going until the next meltdown. I feel so guilty that I am letting it all out and yet I think I have just let it all build up inside. It probably wouldn't be so bad if I was not so overly tired. I don't think I have ever felt so exhausted in my entire life. The first runner up would be how tired I am after having a baby and trying to get back in to the routine of getting a baby on a schedule. However, at least with my babies, I could usually feed them and put them back to bed for awhile. I never had a baby that was up and down 16 times a night. Some nights Ari will get up to go to the bathroom and we will barely get her all tucked in bed and I barely get back in my "bed" get all settled in and all covered just perfect and warm and she will need to go to the bathroom again. There are some nights we go potty 3-4 times in a 1/2 an hour. Well, after crying my eyes out to my mom and having a pity party about Ariauna, and about being over here and being alone, and missing my kids and every other thing I could possibly cry about I told her maybe since Ariauna was sound asleep, I should crash too. I hung up with her and then said my prayers. It had been a long time since I had prayed my heart out like I did that night. I cried and cried and prayed and prayed that I could be a better mom, that I could be more understanding, that I could be more patient and that I would have the strength to continue on in this journey. Then I went straight to bed......It was only 8:00 p.m. (This was the beginning of getting behind on the blog. Oh well, sometimes fixing sleep deprivation is a little more important. A happy mom, makes a happier place :-) ) I found this saying and thought it was very fitting to add to my post today. It is a good reminder to myself that I am not perfect!