Surgery Stay Day 37- Last full day and night at the hospital at least for now!

Another great night, slept all night. I think we are on a roll for sleeping through the night and having no pain. Yay! We woke up to the sound of the surgical team entering our room at 6:30 a.m. They did not say a ton, just that they were bumping her feeding tube up to 60 and would watch her today, blood transfusion tomorrow and home!  Ari and I both fell back to sleep until 8:30 and even then, I really did not want to get up. I got up and actually finished typing the blog post from yesterday. I fell asleep last night typing it. I finally said to heck with it and just went to bed. We were both still being mighty lazy when we heard Ari's mini ipad ring and it was the kids at home calling to say hi before they headed off to school. After we hung up with them Ari got up and went for a walk. She thinks she is so cool now that she can take her IV pole and go walk herself. They weighed her and she was 49.5, the exact same as yesterday. She wanted to eat a chocolate muffin from the hospitality cart so when it came around we both walked down and got breakfast, but then neither one of us ate it. I just finished making my bed up when Tammy and Maddie came. Ariauna was so excited. She knew that Tammy was coming up but had no idea that she was bringing Maddie. Tammy brought us both a Jamba juice which is one of our favorite treats. Maddie was a bit shy, but not Ariauna. She clung to Maddie like it was just yesterday she saw her and played with her. It didn't take too long for Maddie to come around and then they were reading stories, walking down the hall, and having lunch together.

 

 

The visit from Tammy and Maddie absolutely made Ariauna's day. They spent most of the day with us. We wen to the playroom and they did some crafts, made some silly putty,  played dolls, and most of all just had fun. We had lunch and then came back to the room and played Candyland. We were just about to start a game of "Trash" when Dr. Soukup called to check on Ariauna. She has been at the Utah Valley Hospital and so we have not seen her for a few days. While I was on the phone with Dr. Soukup our temporary principal at the Elementary school Mr. Hague came up to see Ariauna and brought her a really cute doll and some girl lego's, she was so excited. Shortly after that, Dr. Eldridge from the Hematology department came by. Everyone was stopping by to talk to me about the BIG discharge day tomorrow. About that time Aunt Angela came up with Haleigh, Camilla and she brought our cute Sadie Goose. We all visited for a bit and then Tammy and Maddie headed out. We then spent the whole evening hanging out with cousins and Sadie. We played a hospital board game in our room, then we went to the playroom and the kids made a paper plate turtle, Ariauna showed Haleigh and Camilla how to make home made silly putty and then we went back to the room. Ariauna ordered her dinner on the phone and then she went downstairs with us to get our dinner. We all came back to her room to eat and her food was just coming so we all ate dinner together. After dinner we went to the playroom to play the card game 7-up. Sadie decided to paint instead of playing cards. I think it was a tie between Haleigh and myself as the winner.

 

 

 

The playroom closes at 8:30 so we came back to the room and then Angela helped me load up two more wagons of stuff. I helped her walk it down to her car and then she was going to drop it all off when she took Sadie home. After they all left Ari and I just got ready for bed, watched Disney station, had another word  puzzle competition and I tucked Ari in bed. We had a terrific day today. Lots of visitors to help us pass the day away. Ariauna is so excited to go home tomorrow she can hardly stand it. So the plan for tomorrow and the next little while is:  Have a blood transfusion in the morning to help give her a boost since she is very low. While they are doing that, I will have some training on her PICC line and on her feeding tube machine. We will have her on continual feeds at 60 ml's for two weeks. At that point we will have an appointment with Dr. Soukup and see what she thinks. Then they may take her off tube feedings during the day and only have them at night for awhile. They will just have to see how things go rather they keep her on the feeding tube until her bone marrow in 2-3 months. They said her appetite is totally normal for someone who has been through what she has been through. Today she ended up having nothing for breakfast, she had about 1/2 of the corn dog a couple of chips, a pretty good amount of water and then for dinner she ordered and ate about 1/3 of her top ramen, a few fries and a chocolate milk. They said it all takes time for her appetite to come back. Sometime soon if her appetite does not pick up then I can call Dr. Soukup and see if we can lower her feed tubes to help her get a better appetite. They will send us home with the feeding tube and then Home Health will come out and bring us more supplies for that and her PICC line. I will have to flush her feeding tube out about every  4-6 hours during the day and then the PICC line we have to flush out every 12 hours. Then Home Health will come to our house on Thursdays to do CBC blood draws. They will talk to Hematology about her blood work and if they feel like she needs a transfusion or platelets then we will go in to the clinic the next morning on friday to do that. That way it saves the $100 ER visit. They informed me today that her ANC blood level is right at the turning point of being scary. The ANC is the major part of your body fighting off infections. So her white blood cells are low and then the ANC is really low. So now we will have to decide what to do about school. I had one doctor today say they would not send her back to school, church, ect at all until after her transplant. And another one that said if she really loves and misses school she could try to go back. I guess I will see what the surgical team in the morning says. Kind of scary!  We have been told that we really need to start making things strict at home. We have been advised by the hospital to type up a note to put on the front door telling people our visitors are limited and that if they have been fevering or sick in the last 2 weeks not to come in. We are going to have hand sanitizer everywhere and things are going to get strict. If Ariauna was to catch something, her immune system and her intestines could get a serious infection and she may not be able to fight it off. If she gets sick she has to immediately go to the Hospital. So I hope people will not get offended about the note on the door, but will understand that this is to protect Ariauna's life. The count down is on and I am sure we are both looking forward to being home with our family again. Hopefully we can celebrate Jaxon's birthday for a little while tomorrow.