Surgery Stay Day 30- Insurance news and trying to wean her off her NG tube

I have decided nights are definitely the hardest part of the day. Our night was long again....( I have to throw in a bit of humor here, but my nights lately are seriously worse than having a new born baby. At least with a new born baby you can usually feed them and put them back to bed). With Ariauna's issues right now, it is listening to her moan and groan all night and knowing I can not do much for her. Last night besides moaning all night, it seemed as if she was having nightmares. It broke my heart. I could here her talking in her sleep and crying about people being mean to her, and telling the nurses no. I couldn't sleep most of the night. I really try to focus on making Ariauna happy during the day and some days it is easier than others. The fancy room we have "lived" in for 30 days is not much bigger than my front family room. We try to get out of our room as much as possible, but since her suction for her tummy is connected to the wall it is hard to be out of the room for too long. Well today the surgical team wrote up a new order for Ariauna and that was to stay off her suction for 2 hours and then be on it for 30 minutes and then back off. We'll to say the least it made for a very difficult day. Our morning started about 7:00 a.m., we tried to keep sleeping until 8:00 but then we were up for the day. I called home to see how things were, Jaxon still has his cold and Austin wanted to stay home from school because his tummy hurt. So grandpa was taking Sadie down to Heather Shober's house, she has been doing her hair for her every morning this week and then after school she is going to go to Heather's to play with Troy and Zoey. Austin is going to stay home and rest all day. First thing this morning they weighed Ari and she was 46.64, so up just a tiny bit. While up to do her weight she did her first walk of the day. She spent a short time watching cartoons this morning. Holly, the Child Life Specialist on the Surgical floor came by and brought Ari some fun activities to do. The surgical team came in and said they want to try to wean her off her NG (suction) tube a little bit today. So the fun began, we took her off the suction and right before the two hour mark she started throwing up. We immediately put her on suction and she quit throwing up. The next time she made it the full two hours and we got her on suction before she got sick to her stomach. The funny thing is, all day about 15 minutes prior to the two hour mark she would start complaining she did not feel good and sure enough she would start throwing up if we didn't get her right on the suction. I feel so bad for her. In order to go home she has got to be off the suction, so I know the doctors are just trying to get her off a little at a time. After waiting the first 2 hours and Ariauna watching the clock to see how much longer until she could be hooked back up, I decided we needed to get out of her room and keep her busy today. After getting ready for the day, I put a phone call in to Dr. McManus who came down yesterday to talk to me about Insurance while I was at the doctors with Jaxon. She gave me the bad news about our Insurance company. United Healthcare that we have is contracted with PCMC for most things, but unfortunately it is not contracted right now for Bone Marrow Transplants. Ugh!  My heart sunk, I am telling you we do not have much good luck right now.  She explained that PCMC is in the process of getting a contract for Bone Marrow with them, but it has not gone through and could take a long time to go through completely. I was just sick to my stomach, she mentioned a couple of options that we can do right now. One is to apply to get Medicaid, I have a feeling Jerry probably makes too much but I guess it all goes off wages, family size, assets, etc. They said they always try to have Bone Marrow families apply for it because it can't hurt. If anything it would give us the extra financial help. The other option is to have Lindsey a financial advisor at the hospital work on getting a single case agreement for Ariauna. I guess they have had good success with other Insurance Companies, when they are working on an agreement. Even though the whole hospital is not under agreement, they may approve a single case agreement. Of course because I am a worrier, I asked what if they don't. I asked her if this is something we were going to have to be coming up with thousands of dollars. She said no, if all else fails there are other hospitals that United Healthcare is contracted with that they could definitely get us into but one is in Denver, CO and one is in CA. She said they would do everything they could to keep Ariauna here at PMCM because a BM transplant is hard enough on a little girl, let  alone if she is having to travel far away. She said she feels pretty confident that they can get a single case treatment for her. I sure hope so, I can not imagine having to go out of the State for it and being gone from Jerry, my other kids and my family and friends who are my support system. So we can still use lots of prayers that the insurance stuff will all work out. While they are in the process of working out the Insurance part of this, they are trying to get permission from the hospital to continue with getting the full counts on the donors without waiting for the Insurance company, so that we can at least get the ball rolling for the transplant. I finally, after much persuasion got Ariauna to agree to go to the playroom to see if they had any more fleece pillow crafts. One of the kids in a room by us had done one and it was really cute. So she did her 2nd walk for the day and walked clear to the play room. We didn't even make it half way through her pillow when she started complaining that her tummy hurt. I convinced her to try not to worry about her tummy and to stay busy. We finished the pillow and then one of the volunteers named Kate started her on a bug catcher. Aunt Angela came and found us in the playroom. Ariauna was excited to see her. As soon as she found us she told me that the social worker was looking for me. She stayed with Ariauna and I headed back to the room. The social worker's name on the 4th floor is Kristin and she seems really nice. We talked for about a half hour and she did a really good job at explaining things to me. She gave me the paperwork to fill out for Medicaid. We talked about my feelings and how I am coping.We talked about other families who are going through similar circumstances and things they do to cope. It was really good to talk to her. She left and then came back a few minutes later with a story called "Hi my name is Jack". It is a story about a family who has a chronically ill child and that the feelings and concerns they have are very normal. She gave us the book to keep to read to Ariauna and our other children. She also brought Ariauna back a "Lenny the Lamb" Scentsy plush animal and told her it was from all her new friends on the 4th floor. It has a lavender packet in it and Ariauna absolutely loved it. When we got back to the room, Ariauna got a little ornery. I am sure she was tired. Angela stayed most of the day, we don't get to see her too much during the week. We played UNO, Garbage, went outside for a walk and sat out by the small pond and waterfall. It was nice out and felt great to get some fresh air. She threw up a few more times as her time to get plugged back in to suction started approaching. So weird that her little body can only handle it for so long before she loses it all. Grandma and Grandpa came to visit. Today is their 45th Wedding Anniversary, HAPPY ANNIVERSARY to them. They spent the day tending Jaxon and then spent the evening with us. We all played 7 up and I think everyone had a good time. While we were playing 7 up we got a couple of pictures of Sadie and Jaxon, having a campfire and sleepover at their cousin's house. It looked like they were having a great time. Jerry and Austin were going on an order of the arrow campout tonight. We finally convinced Ariauna to go down to get dinner with us and then we went back up to her room to eat it.  She walked to the elevator for her 3rd walk. After they all left our nurse came in and changed Ari's dressing on her PICC line, then we got ready for bed, went on her 4th walk just down the hall a ways and then got Ariauna all  tucked in bed. I read up on a few more families who have children with Fanconi's and then I blogged. She had a pretty good day, she did much better when she was busy and not thinking and worrying about being on the suction. They did up her feeds tonight at 8 p.m. to 30, so hopefully she can handle them through the night. Thanks again for all the love, prayers, well wishes, comments on the blog. You will never know how much your little acts of kindness are carrying us through this difficult time. I have so much to be thankful for!  Today I am thankful for my sweet Ariauna, for the best husband in the world, for my three other beautiful kids and for their help and strength in what our family is going through. I am thankful for sweet dear parents, for my brothers and sister and their families and for dear friends who are keeping my family fed, taking care of my kids and giving my kids at home fun activities to do. I indeed have the best support system and for this I am grateful

       Doing crafts that Holly brought in for her to do.

          Making a fleece pillow in the play room.

           Playing UNO with Aunt Angela and mom.

Getting her PICC line dressing changed (very sterile procedure).

      Mom and Ariauna enjoying some fresh air outside.

        Sadie playing baseball with Heather's family.

  Sadie and Jaxon enjoying an evening with their cousins.