BMT Day +19

Today's daily photo is brought to you by Sissy Baum and her family. This was taken in California at one of her brother's college Water Polo games. We love and miss you Sissy!

 WBC- 1.2               26 days in the hospital
Hemoglobin- 10.1     48 days away from home/kids
Platelets- 32
ANC- 0.5
Weight- 55.44

 Ariauna had a little bit of a low grade fever through the night last night. It was 100.8 which is not too bad, but the hospital considers anything over 100.5 a fever. I actually slept in until 10:00 today. I thought for sure I had missed rounds. I got up just in time to hear what the doctors had to say. The doctors decided to drop her Fentanyl from 25 to 15 today and they dropped her nausea meds to once a day. Her rash is becoming more distinct again so they are a bit concerned about that and so they will continue to watch it. Also the nurse feels like her urine is cloudy so they are going to test it also to make sure there is nothing going on there.  Ariauna did not wake up until 2:00 this afternoon other than to get up and potty and then she would go right back to sleep. I am not sure if the hockey game yesterday and the two walks in the hall just was way too much on her or if her little body is just trying hard to make lots of cells and needed the extra rest today.

 

 I spent some time today filling out some packets to try and get a few grants that some foundations offer to families who are going through transplants like this. Our Social Worker Marie gave us information for about five of them. Some of the grants actually will not give money directly to you but will help with a house payment or medical expenses. We would be grateful for any help! We are not going to lose our house or anything, but with me not working either of the two jobs I was previously working, and all these extra bills coming in, things are a bit tight and we are not sure some days where the money is going to come from. Ariauna was basically up long enough to get her medicines, go to the bathroom, do her school with her tutor Mrs. Julie and then she went back to sleep from 3:00 - 4:00. When she woke up we went for a short walk in the hall. She only ended up going around 1/2 the loop. I think yesterday was just too much for her.

Don't you just love her new long brown hair. Crazy to see my kids with anything but blonde hair. She certainly made a few nurses take a double take while she was out in the hall. Here is a fun video we thought we would share!

We skyped with Angela and her kids for a little while until Ariauna started dosing off to sleep. So we got off and she took yet another nap. This evening I woke her up long enough to take a shower, finish her homework, and to face time with the kids. And then I pretty much tucked her in bed for the night. It was kind of a rough day today for her. She ended up throwing up three times today and slept so much. I was really worried about it. It seems as though she is more tired today then she has been with all those narcotics running into her. They are actually taking her off the narcotics and she is sleeping more. The nurses, keep reassuring me that it is very normal. Once they start getting up and walking and things, they get very exhausted easily. I am worried she will be up all night, because she literally was probably only awake for a total of 4 hours today.

Today I am so grateful to all the people who have helped our family with the financial burden of this. We are slowly starting to see bills come in from Ariauna's stay at Primary Children's for 5 weeks in March/April and starting to see things trickling in for this part of the journey. And unfortunately once we get to go home, then we will have to turn around and come back in February for her 6 month evaluation and again for her one year evaluation. Then we will need to come back once a year every year after that to meet with the team of doctors here. I have no idea what we would be doing if it were not for all of you that have helped our family out. I am so grateful to each of you! Those who have helped plan fundraisers and carry them out, to those who donated things for the fundraisers, and to those in our community that helped to support the fundraisers. We are also so very grateful for the Ronald McDonald House and those who help donate to them and support the families that stay. Just our five days in a hotel when we first came was enough for me to realize the thousands and thousands of dollars it would be costing us to stay in Minnesota if it were not for the Ronald McDonald House and their generosity. Thank you, Thank you! I will forever be grateful  to each and every one of you!