Surgery Stay Day 33- The good, the bad and the ugly!!

We'll I am not even sure where to start this post. The good, the bad and the ugly.... I think we had just about all of that today. We will start with the good news..... Ariauna had a much better night last night. Still not perfect, still tossed and turned but nothing like the last several nights. Any improvement is better than none, especially in the middle of the night. And she has had a much better day today! I will tell you all about it in the post.  We started our day out with a bit of Ariauna attitude. I know most of you don't believe that about my sweet little girl, but trust me after 33 days in a tiny room, your stomach hurting pretty constantly, she definitely has moments of attitude. I don't want to take a walk, I don't want to do anything, staying in this bed would be just fine for me. We'll it was not long and the Dr. Mark (fellow surgeon) came in with the team. The first thing Ariauna said to him was she was hungry. She has told me and the nurses that several times in the last few days and we keep telling her she needs to tell the doctor because he is the only one that can write the orders for her health. We'll she said just the right thing and just to the right person because he gave her permission to have a Popsicle.

So after 2 1/2 weeks she finally was given permission to have Popsicles, dum dums, or a slushy. She was so excited, as you can plainly see by the look on her face. I think that Popsicle probably tasted so good.  After the team left the room we got her up for her first walk, much to her dismay. Thank goodness we had a great Tech today (Mary) who has a way of convincing Ari to do lots of things. 

Mary bribed Ariauna that each time she completed one of her walks today she would turn one of her squares on the board that she normally just gets an X in, to a cute character. So off Ariauna went and she walked so fast you would have thought she was running a marathon. Here are the cute pictures Mary drew for her today.

So the first one was Tom or Jerry from the cartoon Ari was watching at that moment. The second one is obviously sponge bob square pants, the third one was Pippy long stockings (who Ariauna did not even know until we borrowed a movie from the hospital and watched it. She loved Pippy!) and the last one is from Despicable me. She is an excellent Tech. After her walk we weighed her and she was down just a tiny bit. Today she was 47.52. I also asked the nurse to look up the results from her blood work and parts of it had dropped more. Her white blood cells were 1.9, her HCT was 37.0 and her PLTS were 26. Her HCT was still pretty good, but the other two have dropped some. Still not to the scary point where she was when we came in, but not real great either. The order for today was to up her foods to 35 which they did and so far so good. And then to continue the suction off for 2 hours and on for a 1/2 hour. While the team was in I asked them if they have ever had a patient that has taken this long to get off the suction and Mark said he personally has not, but that another surgeon upstairs has had one that took a month after surgery. I thought to myself, GREAT. We could still be here another 2 weeks. Ugh! Well shortly after they left it was time to put her back on suction and guess what?  Not much came out... I was so excited, I almost ran around the hospital screaming of joy! She had been off for two hours and normally as soon as we hook her back up, it suctions her out like crazy. Not today!!!  The next time it was time for her to be suctioned she said she was fine and didn't want to be suctioned. It ended up being 4 hours later when she finally said her tummy was a bit upset and she wanted to be hooked up. I was so proud of her, and again when we did suction not much came out. She spent most of the day going 3-4 hours in between. When it was time for the shift change this evening, the day nurse had only gotten a total of 450 ml's out and previously in a 12 hour shift they would get about 1200. So a HUGE improvement today. They do not have to do any replacement fluids until it hits 400, so the day nurse only ended up replacing 50 ml's in replacement fluid today. Yay! Well Ari continued to enjoy having Mary the tech popping in all day, while I went and dealt with Insurance, Financial, Medicaid issues. What a nightmare!  The social worker from the 4th floor came down and went with me to talk to the Medicaid person in the hospital. I had filled out paperwork to try and get Ariauna to be covered (per hospital's recommendation). We turned in that information and then Kristin (Social worker for the transplant floor) took me to the Financial Advisor- Lindsay's office. We started talking to her about Medicaid and about doing the single contract with United Health care. They talked to me about so much stuff, that my brain was on overload, I was confused, stressed, and emotionally ready to cry. The single contract that they really want to happen actually has to be approved by PCMC and also by Jerry's company. So she suggested that Jerry go and talk to the owner's of his company to let them know the situation and that United Health care is not contracted at PMCM center and so if we were to stay here and have it done without a single contract and without Medicaid, United Health care would only cover $30,000 of the $300,000 transplant. Yes, you heard me right. This transplant costs $300,000, had we had a sibling match it would have been about half that price. I just about cried when they told me how much it would cost. There are a lot of things going through my head right now, some I will not even share. But it is scary to think it will cost that much, no matter who and how it gets paid for. The problem is to ask Jerry's company to do that, most likely means it will increase the whole companies premiums. The financial advisor also talked to me about the Medicaid route. We discussed Jerry's wages, and our asset's. What a bummer, this is the one time in the world, that it stinks to own and have lots of things in your life paid for. Medicaid really won't deny us because of Jerry's wages, but they could deny us because of our asset's and because off our life insurance policies. Anyways, we are still working on that scenario too. The other option is like I said before, Ari and I catching a plane and going out of state for awhile. The thought of that is heartbreaking, but I also do not have an extra $300,000 laying around. We will continue to pray that it will all work out and that we will be able to stay close to home to go through this next trial. Daddy came up on his lunch today to give Ariauna something and so we both went down and talked to the financial person a little bit more. I spent the afternoon trying to call on life insurance policies. This afternoon Brent and Karen King came to see us again. We absolutely love their visits a few times a week. Shortly after they came LaVon Hatch came to see us and brought Ariauna this cute scrapbook page.

It was pictures from the Mother Daughter Activity Day Talent Show last week. LaVon had came up and taken the picture of Ariauna and I with the wooden bird house she had just made. The top part of the layout is pictures of the other Mom's and daughters that were there and a little note about what they did for their talent. Ariauna was so excited for this and it was so sweet that LaVon has continued to remember Ariauna. Ari has felt really bad that she missed the Father Daughter party and now the Mother Daughter one. LaVon is one of the Activity Day leaders in our ward.  

This is LaVon and Ariauna. It wasn't long after our visitors came that Ariauna's school tutor from PCMC came to work with Ari, so we left Ari in her room and went to the little visiting room for a bit. After LaVon left, the Child Life Specialist Holly came by to visit Ariauna and she ended up going to her office and found this fun craft to do with Ari. They sat and made sand pens. We finally got this next picture of Holly and Ariauna. We have talked so much about Holly and how great she is to always keep Ariauna's mind off of the tests, surgeries, etc that she is going through. We love Holly!!

After Holly left, Ariauna and I fell asleep from 5:30 until 7:00, it was great. I should have gotten a picture of the two of us all crashed out on Ari's bed. (Not the most comfortable bed for two, but it is great to snuggle with my sweet girl sometimes.) After our nap our friends Molly and Erin came to visit us and brought us yet some more gifts. I have to tell you that Molly was here the day that Holly from Child Life was explaining to Ariauna about her blood and about going up to the 4th floor and losing her hair. Holly mentioned maybe coloring her hair a few different shades before it all starts to fall out. We'll leave it to Molly, she took care of that for us and brought Ariauna pink and purple hair coloring.  So she is set to color her hair any which way she wants before losing it. Sweet idea Molly! After the last of our company left for the night we did our last walk and got ready for bed. I got Ariauna all tucked in, but because of our late nap, she just barely feel asleep (11:50 p.m.). She was busy watching the Disney channel. She continued to do well with her suction all day. In fact I just turned it off and I don't think there was even 50 ml's this time, so I am going to leave it off for the night and see how she does. I am looking forward to telling the doctors in the morning how well she has done.  As for the kids at home, Jaxon is still sick and not feeling well and now he has shared it with grandpa, so we won't get to have visits with them for a few days. Austin had waterpolo tonight and I guess Sadie had a sad day missing her mommy. It is nice to go home and spend a bit of time with them, but then it makes it hard on them for a few days after I have to come back up to the hospital. Today I am grateful for Jerry's job and for Insurance. Even though I think it is crazy stupid that United Health care is not contracted at PCMC to do Bone Marrow, I am grateful that Jerry has a job and that we have Insurance. Even if it means traveling away from our family, I can't imagine not having Insurance. Hopefully it all works out!