BMT Day +5

Today's daily photo is brought to you by the Leishman family (My sister and her family). Uncle Guy must have been taking the picture. We love and miss you guys! Thanks for helping us with picture +5.

WBC- <0.1
Hemoglobin- 6.8
Platelets- 9
ANC- Not available right now
Weight- 51.92

I think last night was one of the longest nights of my life. I think I literally cried myself to sleep and probably didn't get to sleep for long before the nurses came in at 2:30 a.m. to let me know they had drawn her labs and gotten them back and she was in need of red blood cells and platelets. As you can see by her numbers above. (During the transplant process they will transfuse red blood cells under 8.0 and platelets under 10). So they came in and got her pre-medicated to do the transfusion. They also took her temperature at 3:00 a.m. and it was 101.7 so they had already given her Tylenol for the transfusion so hopefully it will help it go down too. They continued to watch her fever closely. I didn't get much more sleep with the nurses in and out with the transfusion and machines beeping on and off. The red blood cell transfusion ran for about two hours. I sat in my bed and just listened to Ariauna moaning and groaning in her sleep. It breaks my heart to see her in this much pain. I hope these horrible days do not last too long. About 8:00 they came in again pre-medicated her with Tylenol and Benadryl so they could do the platelet transfusion. They got those started and they ran for an hour. About 9:00Ariauna woke up and just took a swallow and was in a horrendous amount of pain. It broke my heart. She cried and cried that her mouth and her throat hurt. The nurses came in and looked in her mouth and throat with a flashlight and sure enough she is getting more sores (Mucusitis).  I called the nurse in and they gave her a boost of Morphine. She is on a drip, but said it is very normal for kids to need a few extra boosts during the day. It wasn't long after that, they came by to do rounds. I stepped out in the hall with them and they went over everything. All her labs, respiratory stuff, what has happened the last 24 hours and it is all noted. They talked to me about everything and said she is right on track for a normal transplant. We have been told all along that days +5 to +7 are usually when the worst stuff starts. Sure enough, it is definitely right on the nose from what the doc's have told us. Today is day +5 and a lot happened today. They discussed the amount of pain with the Mucusitis and that they should probably bump it all up today. So they are actually going to bump up her continual drip. She was getting .3 and so they bumped it up to .9 and then they have also increased the dose of her bumps from .2 to .5 in case she needs a bit of a boost. They can by rights get the boost every 2 hours if needed. Right after rounds the doctors stepped in and again listened and checked Ari out and visited with us. They admired all the pictures we have on the walls, they admired our family at home and our 1,000 paper cranes. They again told Ariauna she is doing fabulous and is still an A++++. Ariauna had been begging for a shower all morning but I wanted to hear what the docs said,  I definitely did not want to miss them. Ariauna then requested for the nurse to come in to help get her all taped up. We have to tape her all up every time she gets in the shower or the tub. They only have a shower  here, so Ariauna didn't have a choice. She does really well while they are taping her all up. They have to plastic wrap her Hickman line dressing and then tape all the connections on her lines. At 10:00 her temperature was again 102.5 so they gave her some more Tylenol. Her fever dropped for a little until the Tylenol starts to wear off and then she spikes a fever again. This pretty much happened all day. She had several bouts of diarhea today which they say is very normal for Transplant patients. After having such a busy morning we got her up to shower. It is a process to get in the shower. We have to have someone come in and tape her all up. They have to cover her Hickman line and then any of the connectors that might get wet. Here is Ari getting all taped up for her shower. As you can see she is still trying to smile and if I ask her to smile for the camera, she still does.

While we are in the shower, the aide comes in and changes her bedding. It sure feels refreshing to shower and get a clean bed all at once. During transplant they insist on making them shower every 2 days rather they feel like it or not. This is so that there are no germs hanging out in the room. Right after her shower, the nurse came in to changer her Hickman line dressing. This has to be done every 4 days while in the hospital.

After this she decided we were going to do each others nails. So we started with some remover and cotton swabs and worked on getting all the old polish off. By the time we got it all off and were ready to start our manicure's, she was exhausted.She had a busy morning and even a shower takes everything out of her. So we decided to post pone the rest of our manicure for a later time. She spent the next 3 hours all bundled up and resting to let those new little cells GROW, GROW, GROW....

With running this high fever, she feels like she is freezing so she likes to be all bundled up like this. When she woke up from her nap, her pillow case was covered in little strands of hair and I knew then, this was just the beginning of my baby girl losing her hair. It really wasn't too bad today. Just a few hairs here and there. The nurses came in to do her vitals at 4:40 and her temperature was 103.7 again. Poor girl, I feel so bad for her. She is burning up, I can feel her skin and there are even time that her skin looks really pink because she is so hot. They gave her some more Tylenol and of course the next few hours it came down again. About 5:30 we got some fun visitors. It was Amy and her daughter Melanie. She is the local Primary President and her and her family have been so good to us. This is the same one's who came to visit us last week and brought me Ben & Jerry's.... Ariauna was so excited to see them. Luckily she had gotten some Tylenol in her so her temperature was starting to come down a bit. She was very excited to have company come and see us and we had a great time. They stayed for a couple of hours. We played Go Fish several times, then Ariauna taught them how to play Garbage but we only played a round or two of that and we decided we should show them Ariauna's video of her BMT Birthday. So we played the movie of that and then the girls got the idea to get out the new play doh set that Ariauna got from the nurses and staff here. It is the ice cream and cake set of play doh. You can tell they had a great time and made some fun things.

Just about the time we were getting ready to clean up the play doh, Ariauna got a bright idea to eat a starburst. Well that was the wrong thing to do. It caused her severe, excruciating pain and she cried and screamed for 15 minutes about it. The nurses came in and gave her a shot of morphine. She had done the same thing the day before with a tiny little goldfish cracker and it caused her a bunch of pain. I think she is pretty much down to only have things to drink and maybe a popsicle.  At about 11:30 p.m. her temperature was up again to 102.9 so they again got out the good ole Tylenol. I stayed up to help them give her the medicine and then I tried to get in my bed and go to sleep. But as you can imagine, my mind was going 50,000 miles an hour with a million, zillion things I need/want to do. For the most part, it was a pretty good day and of course she would call it a rainbow day. other than the fever things were controlled pretty well with the new increase on the morphine. I prayed my little heart out before going to bed and then went to bed teary.  Today I am so grateful for Amy and her daughter Melanie and for them taking time out of their day to come and see us. It was so good to see Ariauna up and out of bed and playing and having a good time for awhile today. I am also grateful for my sweet family at home. I sure miss them. I miss tucking them all in bed each night, I miss reading to them, I miss fixing them dinner and sitting down to eat as a family. I miss getting them to school every morning and picking them up every afternoon. I miss all those little things that we usually take for granted, until they are taken from us and then you truly realize, it's the little things that matter. Feeling blessed that Ariauna is still doing remarkably well and still getting in and out of bed and being willing to sit up and play for awhile. I truly miss all those little things in life!!!