Surgery Stay Day 38- Going Home and Happy 2nd Birthday Jaxon

We woke up this morning to the sound of Mark- the surgical fellow, they actually come in about 7:30 on the weekend, so you can sleep in a bit more. He came in long enough to say they were doing the blood transfusion this morning and then we could go home. I asked him to check her tummy. Her belly is a little bit extended, he said that is normal with kids when they get up to their full feedings. I probably noticed it more because she has been so skinny for so long. He said as long as it is not a discomfort to her, and as long as she is still having regular bowel movements then she should be fine. When he left Ari got up to go to the bathroom and then she actually climbed in my bed with me. We dozed off for about an hour. We got up about 8:30 and started getting ready for the blood transfusion. I guess Julia the nurse was working today on J pod so she requested Ariauna and Ariauna requested her, they have become good friends. Ari is going to miss all the nurses. Julia came in about 8:50 and said she had just sent the tech down to get the blood. It was not very long and he was back with the blood in hand. They got it all set up and started the transfusion about 9:00. They had it set to run over a 2 hr and 20 minute time frame and then they will have to flush with solution which will take a little big longer.

I got ready for the day and then slowly started making a pile of everything to take home. During a blood transfusion, Ari has to stay in bed to be strictly monitored to make sure she doesn't reject the blood. They treated her with benadryl and tylenol first again.They are constantly taking her blood pressure, her temperature and she has to be hooked up to all the monitors. I finished packing the last minute stuff and took the load to the car. Ariauna ordered silver dollar pancakes, sausage and a red bendy guy for breakfast. She ended up only eating 1/2 a sausage. Our nurse actually went and found some prizes for Ariauna to pick something out to give to Jaxon for his birthday, she even found some birthday wrapping paper. She came back with a pile of stuff to choose from. Ariauna ended up picking a play dough fun pack. We called down to the playroom and asked them to bring Ari the supplies to make her baby brother a birthday card. So she worked on that too while they were doing the blood.

It was about 11:45 when they finished flushing the blood transfusion. Ari and I went downstairs while Julia got all her release papers ready and printed. We stopped by the gift shop and bought Jaxon a couple of birthday balloons and then went to the pharmacy to go pick up her prescription for her antibiotic that helps her stomach contract to keep things pushing through. When we got upstairs she ordered her last thing from room service..... A chocolate milkshake with a pink bendy guy. Julia went and found a cute pair of flannel pants and a white shirt for Ari to wear home. Then she put her milkshake in a to go cup, we signed all the release papers and off we went. Julia pushed Ari out in a wheelchair, I ran ahead to get the car. Julia gave Ari a fun magnetic hangman game from all the nurses with a card signed by a bunch of the nurses we have had. I started to read them but then started crying and had to stop until later.  Here she is giving Julia big loves and ready to go home.

 

 

She was happier than I have seen her in a long time. On the way home the home health nurses and Intermountain medical supplies both called to set up times to drop stuff off and to train us on the feeding tube. They ended up just stopping her feeds at the hospital because if the home health nurses come to the hospital we have to pay for it, but if they come to our home our Insurance will cover it. When we got to the house, it was all decorated for Ariauna (thanks to the Mason's and then Hatch's).

 

Jerry texted right as we were pulling  in the driveway to see if we were home yet.  They were all at Austin's water polo tournament, but he promised Ariauna as soon as she got home he would run Sadie and Jaxon home. As soon as we got home Intermountain Medical Center dropped off a package of all the supplies for her PICC line. Some of our neighbors Aimee and Erin stopped by to see Ariauna. Erin recently cut her beautiful read hair off to donate to Locks of Love. It was a few hours before the home health care nurse and the supplies were delivered for the feeding tube. Jerry was still home when they came so we both got our training on the feeding tube. Then I trained Jerry on the PICC line. It will be busy around our house. We have to flush her PICC line every 12 hours, flush the feeding tube every 4-6 hours, give her the antibiotic every 8 hours and her feeding tube formula only lasts for 8 hours. Crazy! Jerry left to go pick Austin up from Water polo and then we all sat down and ate dinner as a family. What a change that was, it was so nice. I think Ariauna enjoyed every minute of it. We let Jaxon open his presents from us. I think the best present Jaxon got for his birthday was all of us being together at home. I love this little guy so much and am so grateful for him. He has definitely made our family complete. He has changed so much over the last 38 days. he is so much more independent, talking so much more and just the cutest little guy. Happy 2nd Birthday to our fun loving, litle guy! We love you Jack Jack!

 

 

 Jaxon got all new bedroom stuff. I had ordered it all a long time ago from Target. He got new curtains, lamp, pillows, nightlight, rug, wall decals, and I bought the twin size bedding for him but we probably wont put him in a big boy bed until next year. Tonight we took the edge of his crib off and turned his crib into a toddler bed. He was so excited, he thinks he is so big now that he can get in and out of his bed. Jerry started rearranging Jaxon's room and washing the walls so we can put the decals up while Sadie and Jaxon and I left and went to Toys R Us to find something else fun for Jaxon for his birthday. I had not finished birthday shopping for him yet, imagine that!  This is what else we got him.

Band Toys (I know what was I thinking) a shake and go car and a toddler T-ball set. He was so excited. We came back home took a family picture, bathed all the kiddos, got Ariauna all set up with her new IV pole and went to bed.

Today I am grateful for all the little things in life we take for granted. Being together as a family eating, laughing, and just enjoying being together. I am grateful for a husband and kids that cleaned the house for Ari and I to come home to. And I am so grateful for all the doctors and nurses that have taken care of my beautiful little girl the last 38 days. I can not thank them enough for their love, compassion, and care for me and Ariauna. They made our long stay so much better. I will forever be grateful for the doctors and nurses at PCMC for doing what they needed to do to find out everything that is wrong with my little girl. Even though the diagnosis is heart breaking, if it wasn't for the doctors and nurses being so thorough on their exams and tests, we still may not know what is wrong with Ariauna and her blood issues and then she would not even have a chance of getting better. Thank you, Thank you to everyone at PCMC.