BMT Day +8

Today's daily picture is brought to you by Brent, a very dear friend to Ariauna and our family. We loved the picture Brent and can not believe the great lengths you will go to make this little girl smile. Lots of love and laughter from Minnesota :-)

WBC- 0.1
Hemoglobin- 11.8
Platelets- 15
ANC- not available yet
Weight- 53.46

We woke up this morning to a fun message on the white board from our night nurse last night. We love Blake, she is a great nurse. The sad part is you don't get to see and visit with them much when they are on at night. Ariauna was excited to get a note left from her. 

Today is the day that daddy comes!  Yay! Ariauna is so excited she can hardly stand it... That is if she remembers from one cat nap to the next. She doesn't remember most things, but for some reason today, she definitely remembered that and asked me all day how much longer. Today was probably one of the worst days yet. She did not sleep real well last night. She still has a spiking fever, the minute she lays down you can hear this horrible rattling/gurgling noise. It literally freaks me out. I have only heard that noise one other time in my life and it was for something I would rather not discuss right now. Let's just say, it is not a noise I like or want to hear. I know there are numerous kids who have BMT's that end up in ICU and I have worried since day one about it. I was really surprised that before, during and after transplant they have not had her hooked up to monitors to watch her blood pressure, her oxygen levels, and her heart rate. Now, they do come in every 4 hours to do her vitals, but I thought she would be on them continually. I asked a nurse about it and she said that unless they have a reason to think they need it, they won't do it. (I guess it is probably good, because freaky parents like me probably wouldn't eat, sleep, etc because I would be too busy watching those monitors). But with this gurgling noise I have really thought, is she breathing okay, are her lungs okay. Every time they come in to do rounds, I am questioning them and the noise and they just tell me it is normal, it is the mucusitis causing it. (she doesn't want to swallow anything, including her own saliva because it hurts so bad, so it just sits and pools up in the back of her throat making it gurgle). Makes for a very long night for a very exhausted mom to try to sleep when she is listening to her child do that. Her fever was up all night again, still trying everything to keep the poor girl cool. At 8:00 a.m. her fever was up again to 104.3, they gave her tylenol but then she threw it all up.  During morning rounds today, Dr. McMillan still is stumped about this crazy fever. Usually something this high wouldn't last this long if it was just from the transplant. They ordered to have her stool cultured again and to run all the viral tests to make sure they are not missing something again. So now all the nurses and staff will have to gown, glove, and mask up before entering our room. It is all done for precautions to make sure she does not have an infection. They also talked a little about Graft Versus Host Disease (GVHD) because some of the symptoms are the same, but usually that does not happen until long after the WBC's start to come in and her fever and rash all happened long before then. Praying that is not it, I don't think I could handle that. I have worried about that during this whole process too. The rash today is even more prominent and she is itching like crazy. She itches and scratches so much, there are places she has scratched raw. They decided in rounds today they are going to switch her from morphine to fentanyl which is another pain narcotic. Sometimes morphine can cause people to itch. So they want to make sure the morphine is not the cause.

 First thing this morning they came in and got Ariauna all taped up for a shower.

Here she is after her shower, exhausted and sounds asleep again. The second picture I took to show how thin her hair is getting.

Her school teacher came in around 10:00 today but we could not get Ariauna to wake up and even when we did get her to wake up, she could hear us but she could not keep her eyes open. All these pain meds keep her pretty knocked out. Ari took a nap for a couple of hours and then occupational therapy came in to work with her. This is the first visit we have had with them. They wanted Ari to get out of bed and sit at the table and work with them. They work with them on small motor skills. Once we got Ari up and to the table she did pretty good. They had her do a maze with a pencil, then she did a hidden picture page, and then ended with cutting a circle out of paper with the scissors. Crazy to think when you are in the hospital for so long like this, that you can get so weak and tired that it affects you physically and even down to your fine motor skills. Ariauna spent the majority of the afternoon napping. She would wake up for short little times but it was usually for potty breaks. Her fever was up to 103.3 most of the day. Amy from Child Life came in about 3:30 and we tried to wake Ariauna up but no such luck so she left Ari a really cute note on her white board.

Ariauna and I got a text from daddy as he was leaving Salt Lake City! Here is the plane he got on and here he is right before take off.

Ariauna can not wait for him to get here and has given me strict orders that if she is asleep, I better wake her up. Daddy has a lay over in Chicago so it will be a bit still. He doesn't land in Minneapolis until 11:30 p.m. The Care Partners group actually got us a cab voucher to use for him to get to the hospital. It worked out perfect. As it got later and later, Ariauna tried to stay awake, but while watching her favorite Disney shows she drifted off to sleep. 

Jerry and I texted in between his flights and I asked him if he was prepared to see his daughter. I tried to explain that she does not look good. I know when people see the pictures on the blog, she doesn't look good. But the pictures do not do justice to how she looks in person. I tried to blog to keep myself up and waiting for Jerry to come. He let me know when he landed, and when he got in the taxi. It was about 12:30 when I got the text that he was almost to the hospital. I whispered and told Ariauna I was going downstairs to meet daddy. I took the cab voucher down and met them at the front doors. I gave Jerry a big hug and helped him get the luggage. We came in and got him all checked in with the hospital security, got him a temporary badge and headed up the elevator. I was so grateful to have Jerry there, it was an immediate feel of relief knowing he was here and knowing he could help me make it through the next several rough days. My birthday started tonight at 12:30 a.m. when I was able to meet my BFF at the hospital entrance so he could visit myself and his daughter that he has not seen for over a month. We gathered together at the side of her bed and shed tears. 

 Jerry got her aroused a little and then of course she needed to get up for a potty break. On the way back to her bed our sweet angel wanted her daddy to hold her and so they sat together in the recliner and I watched my sweet husband shed tears like I have never seen him shed. Jerry and I both just sat and weeped. This is the first time we have had together since this all started and I know, no matter how much I warned Jerry what she looked like, it isn't real until you see her and can hear her moaning and groaning and gurgling. We both just cried and cried and Jerry just sat and held is little girl tight.

If this last picture is not enough to break your heart, I don't know what is. Nothing like daddy sobbing as he holds his sweet little girl who is fighting this disease so hard. After about a half hour we got Ariauna all tucked in and ready for bed and then daddy gave her these flowers. (And yes they are fake! The nurse even about freaked out when he brought them out of his bags). He brought Ari a dozen roses in a variety of colors and me a dozen pink roses. I have never seen such beautiful, fake roses. They even have little drops of dew on the petals, they are so pretty. Due to the time, I crashed on the recliner in the room and Jerry crashed on the couch bed.

Today I am grateful for, the Condie's and their generous donation of frequent flyer miles so that Jerry could come and see us. We can not even begin to thank them enough for offering to do that for our family. You can not even imagine the smile on Ariauna's face when her daddy woke her up. I am so grateful to have Jerry here right now during these roughest days, to be there to love and support us and to help relieve me a little bit. Thank you Cal and Carrie for helping to get Jerry over here with us, we will forever be grateful to you. I am also grateful to my sister and her family for taking on the kids at home for the whole extended long holiday weekend so Jerry could come. We definitely could not be doing this without the help of everyone. Thank you, Thank you!