6/11/12 - A mother's intuition is generally always right

Haylee had a good night!  She slept so good that she was a little difficult getting up at 10am this morning.  Even Linnea (day nurse) said she was a little grumpy when she came in around 9am to give her her pills.  I got her up around shortly after 10am and she was happy then :)
PawPaw and Adam showed up to visit in time for lunch.  We tried to get a meal ticket called down for Haylee to eat in the cafeteria but since she is on a fat restricted diet, the nutrition office wouldn't allow it.  She's been doing really well sticking to the low-fat diet with no complaints except for today when she wanted pizza and wanted to know why she couldn't!
Katherine, one of the PA's, came in right as Adam and PawPaw were leaving to say that everything still looked good.  Today is when they wanted to start her on a new anti-fungal medication.  I've been stressing about it all weekend ever since Kelly told me the possible side effects of it (such as kidney damage/failure, fevers, rigors, chills, bone pain, drop in blood pressure, anaphylactic symptoms like difficulty breathing, swelling, hives, etc).  I googled it last night and didn't like what I read about it (see above!).  I told the doctor today I was nervous about this new med and how I would rather Haylee get the one she had before that gave her the rash because at least it didn't bother her.  Katherine said that there really wasn't another option and that they wouldn't give her the anti-fungal from before.  (Please keep in mind that the only reason she's getting the anti-fungal is for precaution only - Haylee doesn't have a fungus.)  Not the answer I was looking for, but I was willing to keep an open mind and ask Linnea a ton of questions.  Linnea said that when she heard in rounds today that they wanted to start Haylee on Ambisome (aka Amphotericin B, the anti-fungal) as a precaution, even she questioned it.  Apparently, the nurses on the floor call it, "Ampho-terrible".  Um, hello!!!  If the nurses are calling it that, then it can't be good!
Miss Ashley showed up for a visit today and got to experience medication drama right along side us!!  (Thanks for sticking it out with me, Ash!)  Around 3pm, Linnea came in and started her on a pre-hydration saline solution that would help prevent any kidney damage and it ran for an hour.  Haylee and Ashley were playing and she was happy!  At 4pm, Linnea came in with her chart cart, Benadryl vial, and Ambisome.  Because most nurses are aware that Haylee will react to almost anything and everything, she also told 3 other nurses where she was going and why.  Linnea pre-measured Benadryl and prepared to stay in the room for the first 15 minutes to watch for any reactions, especially anaphylactic reactions.  She started the Ambisome and literally 3 minutes later, Haylee broke out in hives on her face, head, chest and arms, she grabbed her head (she was getting a buzzing noise in her head), she said her stomach actually hurt, and she began crying.  Linnea immediately stopped the Ambisome, flushed it out, and called the doctors.  Colleen came in and said to give her the Benadryl and almost seemed like she wanted Linnea to start it again after the Benadryl kicked in but wanted to talk it over with other doctors first.  Linnea gave Haylee 30mg of Benadryl (more than the 25mg she's used to but not the 40mg that was ordered for her).  Within 30 minutes, all of the hives were almost gone and she was sleeping.  Linnea popped her head in and said that Dr. Olsen said not to restart the Ambisome - he didn't want Haylee to have any medication drama during her last admission.  I'm not sure that Colleen agreed with him but I was happy to hear that. 
I was RIGHT to be nervous - my mother's intuition was right!!  I didn't think it was a good idea - this is the one time out of all that has happened that I didn't agree with what they wanted to do.  The only reason I allowed them to give it to her was to see if she would react to it - if she didn't, continue to treat her with it until next week and if she did, I could say 'I told you so'.  Haylee will start an oral anti-fungal on either Tuesday or Wednesday of next week that she can tolerate but it interacts with the ATRA that she's on, which is why she has to wait until then.  Yet another thing to add to Haylee's allergy band!
Haylee slept until about 7pm.  That IV Benadryl really kicked her butt!  She ate a late dinner, had a bath, and chilled for the rest of the night.  We Skyped again with Adam and Mason....she yelled at Mason over Skype because he told her he went in her room and got one of her DS stylus pens.  After she yelled at him, she looked at me like I could do something about it.  Haha!!  Ahh, the sounds of home!  Haylee went back to sleep at 10:30pm.  I was shocked!

The dreaded port re-accessing is tomorrow.  Nonna is bribing her with $20, Lindsay from clinic is bribing her with a Build-A-Bear Ballerina Bunny (whoo!  say that 5 times fast!), and I'm bribing her with a trip to the gift shop.  We're hoping Leah (one of the charge nurses whom Haylee would trust as much as she does us) can be the one to access her.  Leah makes it so smooth and easy :)  Haylee is, however, looking forward to the de-accessing so that she can take a shower and is FREE!!! (well, for a little bit!)

Counts went up a little :(  Not exactly what we wanted to happen, but it is what it is:

WBC - 1740
HGB - 10 (I'm actually ok with this coming up)
Platelets - 115k
ANC - 820
SEG - 47