The other shoe dropping

My last post was titled "Foreboding joy," and in it, I mentioned waiting for the other shoe to drop.  Well, it's been dropping.  The Tuesday after I last posted, we started Becca on a different anti-fungal medication, one that is oral.  We are attempting to switch all of her meds to those she takes orally so that we can get her central line removed and a port placed sometime in November.  This way, we won't have to do dressing changes every week (which are still HORRIBLE), and she can bathe and swim.  So, anyway, after a couple days of Fluconazole (a medication she had taken previously without incident), she had an allergic reaction that included vomiting, diarrhea, and a flushed face which ended up turning almost purple.  Becca even told me to call the ambulance, so we knew it was pretty serious.  We gave her Benadryl and called the clinic the next day to let them know we were not going to give her any more.  The docs okayed us putting her back on the Miconazole through her central line until they saw her on Monday (and had more time to do some research into the next drug to try).  It was a little eye-opening for Ethan and me, because Becca now has a whole new immune system, which could potentially bring new allergies along for the ride.  We started to think about peanut butter, strawberries, and certain foods that she might now have an allergy to, let alone all of the medications.  Becca asked if we were going to add that medicine to her bracelet (the already full red allergy bracelet that she wears at the hospital)...

So after the Monday appointment where her labs still looked great, Becca was started on Posaconazole as the new anti-fungal. She seemed to be doing okay with it until Friday night.  Around 12:30, she woke up to tell me that her glow-in-the-dark stars were talking to her and trying to tickle her.  I didn't think much of it, since she often used to tell me she had dreams that stars were trying to tickle her.  She was having some pain and itching down below when she used the bathroom, and couldn't sleep, so Ethan gave her a tiny dose of Dilaudid for the pain. Approximately every hour after this, Becca woke me up to help her go to the bathroom, and she was saying really weird things.  I was so out of it from sleeping myself (and having taken some Tylenol PM for body aches and pains resulting from working out) that I didn't put it together that she was hallucinating.

She mentioned blue men and bugs, and finally, when Ethan went in to help calm her down, she really freaked out.  Becca started screaming and crying, panicking that Ethan had an EpiPen and was going to stick her with it.  The really scary part was that she really believed it.  I took her downstairs to calm her by rocking her in the chair, and she kept talking about the bugs she was seeing, and she thought she saw Lily outside the window laughing at her, as well as Stella walking by her.  Her speech was very quick, yet kind of breathy and paranoid, and every time Ethan came near her, she freaked out more.  A little later in the morning, once Ethan was able to convince her that he didn't have an EpiPen, he was helping her in the bathroom, and she asked about the man in the yellow pants that just walked by.

Needless to say, we were all a little worried, and we cut the Posaconazole from her meds.  The hallucinations stopped, and she ended up taking a three-hour nap on Saturday.  Today she has just been "off," and Ethan and I spent the day worried that we were going to end up inpatient at Children's again.  She hasn't eaten all weekend, and she's not been drinking much either.  The little bit of milk that she drank this morning and her morning meds were vomited up right before we left for the Disney on Ice show.  Though Becca hasn't had a fever, she's been alternating between being really hot and shivering.  The show was great, and it was so nice to be in the Dragonfly Foundation box, as we had a bathroom in our suite, and not many people around us.  When we returned from the show, Becca was pretty wiped out.  She wanted to go up in her room and watch a movie with me.  Yesterday, this was the trigger for her nap, so I gladly went up with her to nap.  She fooled me, though, because she wanted to color, cut coupons, and make a shopping list for Ethan.  He returned from the store with the hot fudge sundae that she requested, and she downed about half of it.  She then wanted a grilled cheese, and after eating half of it, the ice cream and grilled cheese came back up.  Still no fever, though, so we did a cap change, gave evening meds, read books, and put her to bed.

I included the pics I promised below, and I will post some more soon (especially now that her hair is growing in so fast).  Becca's hair was actually long enough to stick up a bit this morning!  We are anxious to see what tomorrow's clinic visit holds.  Please pray that her labs are good and that these mysterious symptoms don't land her back on A5 North or South!

 Becca LOVED Camp Elmo last weekend, and it was the perfect day for her to ride her pony, Daisy!

 Becca had her makeup done by Sephora specialists during our visit to the Cincinnati Ballet School's preview of Alice in Wonderland

 A pre-Halloween look at Becca's cheetah costume and the cat pumpkin she carved with her daddy

 Both girls, post makeup at the ballet school

Becca cheered on Lily at her 5K practice for Girls on the Run Tuesday night, and she even ran a couple of laps - was so nice to see her full of energy!

1 comment:

Momto3awesomekids said...

Thank you for the update. Bella & I pray for Becca & your family each night when we go to bed. You all are just so amazing. Continued prayers for you all.