Surgery Stay Day 29 Ariauna's blood counts vs. normal counts

We'll today marks 4 weeks in the hospital. Unbelievable, and something we never imagined! Ari had a little bit of a better night last night. Not so much fussing and whining through out the night. Our morning started pretty early. The nurses drew her blood work at 4:30 a.m. Ariauna was up at about 6:45 to go to the bathroom and I guess I slept through the surgical team coming by. We went back to sleep for about an hour and then Ari was up for the day (even though I could have slept the day away). The nurse got the wheel chair ready and we headed down to x-ray to get the last picture of her stomach from the bowel study.  We came back upstairs and we took Ari for a short walk and then they weighed her. She was 46.42 pds, so she gained a tiny bit more again. Yay! The blood labs came back and looked about what her blood levels have been. I have had several people ask me about her blood levels and so here is what her blood levels are and what they should be. This morning her blood levels were: HCT (red blood cells) 34.5 and normal is 35-45. So just barely low thanks to 2 blood transfusions already.  Her PLTS (platelets) were 29 and normal is 150-400 and her WBC (white blood cells) were 2.6 and normal is 4.5-13.5. So as you can see her blood levels are very low.  I got ready for the day while Ari was texting grandma. She talked grandma in to coming up to visit and bringing Jaxon up (her and Jaxon are bestest buddies). The last few times they have came up they have had Jaxon come in and surprise us. Ariauna decided to walk down to the elevator and hide and when grandma and grandpa came up we would sneak up behind them and surprise them. She has been in a really good mood today and not feeling too sick. We did just that, waited for them to get off the elevator and then followed them to our room. Grandpa was just getting Jaxon ready to open the door when he turned and saw us. It was funny and Ariauna laughed and laughed. Austin told me this morning when I called to check on them that Jaxon was up at 4:30 and wouldn't go back to sleep. When Jaxon got up to the hospital I picked him up to love him and he was burning up. I immediately called our pediatrician and got an appt to take him in. They are only open a 1/2 a day today, so I left grandma and grandpa to watch Ariauna and I took Jaxon to the doctor. Luckily, he had no ear infection, no strep, it is just a virus. Unfortunately, that means no visiting Ariauna until he is better. We got back to the hospital and switched places with grandma and grandpa. I guess while I was gone Dr. McManus the bone marrow doctor came down to talk to me about information with our Insurance, and because I was at the doctor with Jaxon she said she would come back later. She never came back, I am hoping she has good news for me. I am not sure I can handle any bad news in that aspect. Ariauna and I spent the afternoon hanging out. She did get another bloody nose this afternoon (wouldn't you know it, now her face bandages are all bloody again) it bled for about 20 minutes this time. Because of the bloody nose again they retested her blood levels and of course her HCT (red blood cells) dropped from 34.5 this morning to 24.6. Usually anything under 20 they consider doing a blood transfusion. Not sure what they will let her's get to now because they will try to hold off as long as they can because they do not want to do anymore blood transfusions before the bone marrow then they have to. That is why it is so scary when she gets a bloody nose because it can cause her blood count to drop a ton. The hospital school staff came around with the book cart and let her pick a new book to keep. They do that about once a week. Today, she picked a chapter book about Pippy Long Stockings. We read a few chapters in that today, she texted Ms.Holloway (her speech teacher at school) and then got to face time with Ms. Holloway and her friend Meghan during her speech class time. She is missing school and all her little friends. This afternoon Ariauna was doing well enough that they got out the scooter for her again, so she scooterd up and down the hall. Later on tonight she took her 4th walk down to the cafeteria with me to get my dinner. We took a wheelchair to sit in for part of it and then she walked the rest of it. She has been doing a bit better with her foods today. Her suction is not quite as milky which means maybe the feeding tube is not backing up so much into her tummy. I never did see one of the surgeons' today, but one of their Nurse Practitioners came in tonight and upped her feeds to 25 ml's. Yay! So we will see how she does with that through the night. Ari played on the laptop for awhile tonight and she went to bed about 9:00. The only huge and exciting news for the day is that Ariauna pooped for the first time on her own today!  Yay!!  I know some of you think that is probably crazy to blog about, but if you have ever been a parent of a child with intestinal issues, it is a BIG deal when they finally and actually poop on their own without suppository's or enema's. Today was a lot more of a peaceful quite day than yesterday running up and down for x-rays. Overall she had a pretty good day, she had little moments of pain but they didn't last long and she didn't need any Tylenol or Zofran today. Hopefully, she will continue to have some good days! Looking forward to going home for a few weeks/months.

              Ariauna on the hospital scooter