It's been a rough couple weeks here and we are ready for this road trip to be over!!
Last night we were fever watching again. Temps were 99 to 99.9 but never over 100 during the night. Yesterday she did well at home, but we did notice later last night she was tired. She woke me up about 1am and said she had a bad headache. Temp was 99 so I went ahead and gave her a little Tylenol to help with her headache. This morning she was very lethargic and tired not wanting to get up but temp was 99.4 so we assumed it was her hemoglobin low!
Today was Emily's scheduled clinic visit. She slept most of the way to clinic except for eating one pancake. When she arrived her blood pressure was off with a high heart rate and temperature was 100.5! So we were hopeful it was just where she was bundled up from coming outside! They waited an hour later and checked temp again and it was 101.8! So you know what that means...back inpatient...yes again...
She still had no ANC and WBC is still .2! Her hemoglobin was 8.6 and platelets were 36 but they know with fever she will need them again sometime while we are here. They were going to give her them today, but decided before heading inpatient to wait for labs done overnight. Blood cultures were done and they are checking for a few different viruses (which they think could be a culprit of no ANC) while also checking the growth of red blood again and checking IVIG levels as well! They went ahead and gave her a bolus of fluids and some antibiotics and we are now settled into a room on the 7th floor.
We just learned that her IVIG levels were low and will need a transfusion (takes 6 hours and pre medication) and her platelet antibody was negative (which is a good thing)! Right now the plan is antibiotics every 8 hours (unless something grows on the cultures), continuing on all of her current medicines and we don't know how long inpatient! He said normally 48 hours but we are begging for 24 hours if she handles everything else well and no other fevers, but we will have to see how she does. He said the team will talk. But Emily was looking forward to a few things, friends Sue and Jo coming into town tomorrow night and two friends/workers from Divas N Dudes were going to come to the house and see what we could do with Emilys hair and then paint the girls nails and toenails! Emily was excited about this.
Her hair is falling out quickly, she has a bald spot on the back of her head and the rest of it is really starting to knot from the hair that is falling out and making knots with the hair still there. Most likely will just need to take it all off but will have to see how it looks tomorrow. Our hearts hurt that she is having to deal with this part of it again because she said to us, "I don't want to go to school wearing a hat!" She knows that wearing a hat the kids will know she is different and that that you are not allowed to wear hats. We won't make her go to school if she doesn't want to with no hair. Homebound paperwork should be completed today is my hope and we will get that part of it moving. She woke up this morning feeling her head to see if her hair was still there, that completely broke our hearts. It's so hard to see her go through this again. I know dad will shave his head again if she wants him to and if she wanted me to, I would as well! Right now she is just wearing a hat so she won't have hair in her mouth.
Please continue to keep Emily in your thoughts and send her love. We will continue to keep you updated and thank you so much for all of your love and support. Remember to hug and kiss your kids and tell them you love them.