Surgery Stay Day 35- NG Tube gone

We had a great night again last night. Slept all night without any fussing and nightmares. She was off the suction all night again. Yippee! We got up this morning when the surgical team made their rounds. The fellow- Mark came in and was so happy to hear the news that her bowels are continuing to do their job and that she had not been on suction yesterday much at all. So he actually said "Let's pull the NG tube out". Yay!  I was so excited. Ariauna slept through the teams visit, or so she pretended she was. She said later that she heard Mark but was faking like she was asleep. He gave the nurses the orders to let her have a liquid diet today and if she did okay with that to let her bump up to like toast and crackers and stuff today too. He mentioned to me that if she could tolerate some of those foods and they could get her off the TPN and lipids that he would be fine with sending her home with a feeding tube. Stupid me didn't think to ask him right then, but since then I have questions like how long she would have to go home on the feeding tube for, I also would like to ask how soon he thinks we could go home. Saturday is Jaxon's 2nd birthday and Ariauna would love to be home for that. Shortly after Mark left another one of our favorite nurse's (Julia) came in and asked Ariauna if she wanted her tube out now or if she wanted to wait until later. Ariauna wanted it out now! So here it was 7:00 a.m. and we were having her NG tube pulled out.

Doesn't she look so much better without that yucky, bloody tube in her nose. I might say she looks so much nicer without it in. And she looks much happier too. Ariauna asked if she could keep the tube so her nurse actually went and found a new clean NG tube that she could take home. Her nurse today is excellent, she is the one that went and bought Ariauna the big package of bright socks to wear. The nurse also told her that she could be taken off all her electrodes to monitor her heart rate and stuff. Yay, one more set of things off. They took the oxygen sensor off her toe too and said they will have to put it on just long enough to do vitals every 4 hours and then she can go off of it again too. She was so happy. They took her off lipids and TPN for the day and will put her back on it at 6 tonight until 6 in the morning and then hopefully she can be completely off of them. So they actually moved her back down to a small IV pole and she only had the feeding tube running all day. It was so nice not to have a million cords dragging around. We got up and went for our first walk bright and early. Before she got back in her bed they weighed her and she was 48.18. I think that is the first time in 5 weeks she has been 48 pds. Yay! I got in the shower really quick and got ready for the day so we could make it down to the play room for Bingo. Before we left the nurse got Ariauna another orange popsicle and some ice water. She started really slow but ate some of both. This is one of Ari's favorite days. Bingo is always on Wednesdays. The last few Wednesdays she has stayed in her room and played it on T.V., but today she wanted to go to the playroom. Here she is playing Bingo.

Her prize for Bingo today was a new package of make up, specifically eye shadow. After Bingo she wanted to stay and do the craft of the day- Rock art. She picked a couple of red rocks and we turned them into ladybugs. It was pretty fun.We finally got Ariauna to come back to the room and she talked one of her favorite nurses- Marissa in to letting her give her a make over. Here she is putting make up on Marissa, what a good sport she is.

 Then the best part of the day was when Ariauna got to order her lunch for the very first time. This is something she has been waiting for since the day we came. They have room service that you can call anytime from 7 a.m. until 8:30 p.m. and order whatever you want and as many times a day as you want. She was thrilled. Even if it was only off the liquid diet, she was thrilled. She still can not wait until she can call them and tell them to bring her some cheesecake, but for now the liquid diet had to do. Here she is calling to order Chicken broth and a sprite.

 

After lunch Brent and Karen came by to visit for a little bit. I had to step out in the hall and talk to the social worker for the ICS unit up on the 4th floor about financial stuff again. She had the letters from Dr. McManus to send to Medicaid trying to expedite everything. She also gave me the CBC lab work on the three other kids and it all looks good. They will still make an appt in a month or two to have full physicals done and to try and get them tested for Fanconi Anemia. When I came back in the room Ari and Brent and Karen were laughing and I asked what was going on and they said that Ari was trying to convince Brent to let her do a make over on him. He was not quite willing to do that. Good thing, because that definitely would have been a picture moment on the blog!!  I keep forgetting to take another picture of Brent and Karen. I do have a fun picture of them I need to add to the blog back on one of the first days we came in playing cards with Ariauna. I really want to go back and start the blog from our 1st day in the hospital, but it will take time to go back and update it. For now I am trying to just keep it updated daily. Ariauna face timed with her special ed group today at 1:40 so she could say Hi to all her friends in that group. Then we headed down to get me some lunch at the cafeteria and then went to the playroom for the robot craft they were doing. Then we came back to the room and Ariauna had the nurse make her some toast. She loved every minute of it and ate it so fast. We laid down and took a quick afternoon nap. Dad and the kids showed up and I was laying by Ariauna but she was still asleep so Jack and Sadie woke her up. It was cute. Ariauna called down to room service again and ordered more chicken broth and toast. The kids all helped her eat the toast.

The nurse came in to change the Cleve on her PICC line. The kids wanted to watch, but it is a very sterile procedure. So here are Austin and Sadie in their masks so they can watch the nurse do the change.

Ari has been dying to take her brothers and sister to the playroom so we all headed down. She wanted them all to make some homemade silly putty. Here they all are making silly putty.

They all had so much fun. We came back to the room, just in time to get Ari some pudding ordered before room service closed. Jerry got his stuff ready to take the kids home. Sadie left the hospital kicking and screaming again. The kids are so ready for us to be home. Sadie is missing mommy so much and was begging me to let her stay here at the hospital with us. I tried to explain it was against the rules, but she was not talking no for an answer. So I walked her down and then Austin had to carry her through the parking lot kicking and screaming. Breaks my heart. She really needs her mom around right now. Poor kid! I know it is getting harder and harder on the whole family. We sent the family home and then Ari and I had a word search race, watched some more Disney channel, she ate a few bites of her pudding. I don't think it was her favorite thing to eat. We had another fabulous day today and can not wait for the surgical team to come in the morning to see what our next plan of action is. Today I am grateful for the Forever Young Zone at the hospital that has millions and millions of donations from the community that helps the kids keep their minds off what is going on in the hospital and the challenges they are facing. I can not wait to be able to pay it forward some day to bless another family who may have someone in the hospital that can benefit from the fun activities. Austin will be getting ready to do his Eagle Scout project sometime in the near future and as a family we think it would be great to help pay it forward to the hospital who has done so much for our family. For this I am grateful!