BMT day +1

Today's daily picture is brought to you by Ariauna herself from the University of Minnesota Amplatz Children's Hospital. Unit 4 BMT  room 4142.

 WBC- <0
Hemoglobin- 8.4
Platelets- 12
ANC- not available
Weight this morning- 53.24

We had a really good night last night. She slept good and peaceful. Shortly after we got up I went out to join the staff in rounds, not a ton new at this point. They did have to do a Potassium replacement in the wee hours of the morning because it was as low as they want it to get. They also have decided to start her on TPN and lipids (IV nutrition) as her appetite is decreasing and at some point she will stop eating totally. They will monitor that the whole time she is in and change the dose as needed and depending on what she is eating by mouth. They will start that this evening and she will continue to be on it most of our hospital stay and could be sent back to the RMH with it. Other than that they said they would just go with the flow on how Ariauna does and when new symptoms come on they will treat them as needed. This morning her room light was PINK (just okay mood) because she had a rough morning. She woke up and immediately started crying that her throat and her mouth hurt. They immediately got her some morphine. Right now they will just give it to her by IV but only as needed. They expect at some point in the next week she will be put on a continual drip of morphine for the Mucusitis (mouth sores). She also complained most of the day about her tummy hurting. They tried some zofran and that seemed to help a little bit. But it just helps, it doesn't take it away. I feel so bad for her and wish so bad I could take this all away from her. She is such a trooper and I am grateful for that. I didn't see many smiles out of her this morning. I know that is hard for most of you to believe, but she was a little down this morning. She ordered some corn flakes for breakfast and started to eat, but then started feeling sick. It was not long after that she threw up quite a bit. It was just that once. She said she felt a lot better after that. Right after she threw up she went back to eating her cornflakes and ate the rest of them. Then it was time for her to take her oral meds. There are two she has to take by mouth and the one is totally nasty tasting. She fought me and fought me for an hour and a half. I know I am a sucker and should not have let it go on that long. I bribed her, I threatened to take things away (which probably was not the smartest thing to do). Poor girl, I felt really bad. I know they are nasty, but these meds are the one's that protect her and give her less percentages of getting GVHD (Graft Vs  Host Disease), so she does not have a choice but to take them. Finally after an hour and a half (and it has been this way the last few days), I told her I would get the nurse and they would do it. The nurse happened to be coming in right then and so she tried to talk Ariauna in to taking it with no success. She told her that if they had to they would hold her down to do it. She ended up calling another nurse to come in and I walked out. By this time I was frustrated and feeling bad for Ariauna and I know it is only going to get worse as her mouth sores start. I could hear her screaming and crying as I walked down the hall. I went and took a shower and just prayed when I got back things were better. I am not sure if part of it is just a game she can play with me because I am the mom, or what. Anyway, when I came back I questioned the nurse before I came in the room and she said Ariauna finally took it herself. Ugh! Luckily a little later when the doctors came in I asked them in front of Ariauna if the nurses will hold them down to give it to them if it comes to that and they said yes, or they will end up doing a G Tube down her nose. We'll hopefully that is exactly what Ariauna needed to hear, because she definitely does not want another tube down her nose. She had those for 5 weeks last March/April and does not want to do that again. Ariauna did manage to get up and she even wanted to get dressed today. She put on a cute and comfy dress. About 11:00 her nurse came in and asked her if she would like to be unhooked from her IV pole for awhile today. She had gotten all her meds in for the next few hours so they could unhook her for about 3 hours. She wouldn't get fluids for a few hours, but they were not worried about that. Ariauna was excited to be able to be unhooked. I wanted her to get out of bed for awhile so we actually got her up and we worked on a puzzle over at the little table. It was 100 piece puzzle and I thought it would take us awhile, but with both of us it didn't take very long to finish.

After the puzzle, Ariauna sent me down to the ice cream sundae party in the lobby downstairs. They had people there giving out information about the sibling shops they do once a month here and they had lots of games. Ariauna begged me to go down and get her some ice cream. So I went down, but of course when I got back, then she didn't want it. That is pretty much how it goes these days. Order food and then not eat it. While I was gone Ariauna called Tammy on skype to visit with her and her little kids. The last few times we have talked, Maddie has not been there. Luckily today Ari got to see Maddie and Colton. Ariauna and Tammy ended up playing a game of garbage via skype. Ariauna is the garbage queen and won again.

By the time she got done playing the game of cards, she was getting pretty tired. She ended up in the recliner for awhile and took a little cat nap. We also got a fun package today from the Harmon's. Ariauna was so excited and I am sure we will now be having pedicure and manicures each day. Which is fine with me because she likes to try to paint mine too!

Here is Ariauna hanging out without her IV pole for a bit. It was so nice, she even got a shower today and we didn't have to fight over the IV pole in the bathroom the whole time. She was happy to go to the bathroom a few times without having to drag that whole contraption with her.

Unfortunately 2:00 came too soon and Ariauna had to get hooked back up to her pole. Bummer! They got her all hooked up and then the Aide came in to change her Hickman line dressing. In the hospital they change that every 4 days. Ariauna does really good when they have to change and scrub it. After all of this, Ariauna was exhausted. We got her back in to bed and she ended up falling asleep until 6:00 p.m. We spent the evening just face timing with our family at home. We are missing them so much! We just can not get enough of them. They started school today so we were calling to see how the first day of school went. Austin started 7th grade and now goes to Jr. High. Sadie started 2nd grade and had a fabulous first day. Daddy took the day off today to be there with them and he sent me pictures this morning and then I had a few awesome people send me pictures of Sadie during the day today and I got a really nice text from her new teacher letting me know how the first day went. I am so grateful to everyone for helping me feel included in the kids' first day of school this year. I was broken hearted not to be able to be there for each of them. So many things I am missing out on at home. I am so grateful for Austin and Sadie and even though I know this is so hard on our whole family. I appreciate them being tough and strong too. They are putting aside their wants and their needs from their mom so that I can be with Ariauna.

Ariauna and I played another game of Rummikub and here she is posing to let you all know what kind of a day she had. It might have started out Pink, but it ended in a rainbow day!

The nurses came in and got her TPN and Lipids all hooked up for the night. I got Ariauna ready for bed and all snuggled in with her warm blanket and her favorite shows on the Disney Channel (Good Luck Charlie and Jessie).  I blogged and went to bed after midnight again!

Today I am grateful for: My family at home, for Jerry filling in and doing everything I normally do on top of being the bread winner. I am grateful to Austin for being willing to help out at home in places a normal 12 year old shouldn't have to and for putting his needs and wants from his mom aside so I can be here with and for Ariauna. I am grateful to Sadie for being such a great big sister to Jaxon. She is truly a sweet girl and has had to grow up a lot this last year too. Me and Sadie are pretty close and I know this has been hard on her. But she puts a smile on her face and tries to be good and also sets aside her needs and wants to be with me so I can focus on Ariauna. And then my dear little Jack Jack who is changing so much each and every day. It breaks my heart to know I am missing out on so much of his fast changing months. He has changed so much already. I miss each of them dearly and am grateful for all of their sacrifice in allowing me to be with Ariauna. I am again grateful to my parent's for putting their life's on hold to raise my little one's. They too are sacrificing a lot to take care of my family so that I can focus on taking care of Ariauna. I am grateful for the amazing staff at our Elementary school, for previous teachers my kids have had and for the current teachers. So much of the staff at that school are praying for Ariauna and our family. And they are looking out for my little Sadie and for that I am thankful. Today I am also so grateful for nausea medicines and pain medicines to help my little girl feel a little bit better. My heart is so full as usual and am so grateful for all I have. I do realize I am in the middle of a very tough journey right now and I know it is going to get worse before it gets better. But I also have a lot to be grateful for and that is why I want to post my thankful portions! Sending our love from Minnesota :-)