I’ve spent days now contemplating what to write… Ultimately I asked myself this question: Years from now what do I want to remember from the weekend? Answer: Smiles, giggles, presents, & a yummy cake. It was a birthday party in grand White Family styleJ!!
Bradley turned 8 last Thursday & we decided to meet half way (North Platte, NE) Friday to celebrate the big day. Collin was out of school for conferences & Birthday Boy got to miss a day. After our two trips to Colorado ended abruptly, we decided not to chance it again. Instead we opted to drive 4 hours and meet in the middle.
We got a hotel room for the night and Eme and I showed up early to decorate. This year’s theme was Star Wars! Bradley arrived very excited to find banners, balloons, & (most especially) presents!! Even Bella cameJ. All of Emerson’s favorites - “Dad-eye, Beet (aka brothers), & Lello”… a party for sure!!
We went out for dinner and embarrassed Bradley with a request for singing waiters. He wasn’t too bothered by the giant brownie & 4 scoops of ice cream with a candle on top though!! Afterwards we returned to the hotel to open & assemble ALL the birthday presents. We had adjoining rooms & I told the boys they could stay up (in theirs) as late as they wanted – 2am & they were still building, playing, and battling. Emerson loved all the activity & they loved being with her tooJ!! It was Bradley’s birthday, indeed, but I got the greatest gift of all. The smiles & giggles were priceless!
Unfortunately Emerson, in usual fashion, spiked a fever to 104◦ Friday night. I brought her into bed with me (afraid she might seize), but she wouldn’t sleep. Finally about 4am she passed out & Saturday morning she would not wake up. All the activity of a crazy dog & 2 loud boys and nothing… not even a flinch. I called the transplant clinic & they said, “Get her to the closest ER”. The question at that point was whether or not it was safe to drive her to Omaha or if she needed (yet another) life flight back. Honestly, I couldn’t make this stuff up if I tried. 24 hours – that’s all we attempted. 4 hours – that’s as far away as we went.
Long story short, we made a quick trip to the local ER where she was whisked into a triage room & deemed stable for transport. Luckily we avoided a helicopter flight back to Omaha. I’m seriously sooooo tired of all the drama. Eme is a princess all right, but private planes & helicopters we can do without!! She was admitted through the treatment center & here we sit again – same room (#6475), same story, different day.
The current thought is that the Klebsiella infection is back. Her symptoms emerged just one day after stopping antibiotics, & after we pulled her line and re-started antibiotics she looks good again. I’m waiting for Infectious Disease to consult & am hoping we can manage this out-patient. This is honestly getting harder & harder to endure. Especially after a short visit with the boys – I just want to go home. I’ve been fighting for Eme for so long now. Maybe it’s time to start fighting for my family. The team wants Emerson to string together 3+ months outpatient with no hospital admits. Let’s just all agree that’s probably not going to happen & move on to a different plan. I digress…
I honestly wish I knew what I do differently from every other mother. How do others take their children out-patient and stay out? How do others leave Omaha 4 months post-transplant and only return once or twice, or never at all? How do they do it? I want to know… I want to do it. I really, really do.
As usual, I’m tired, cranky, & overwhelmed. I need help but don’t have the time or energy to reply to all the wonderful people who’ve offered their support. Please bear with me. I’ve had so many gracious offers for help with fundraising and medical/nursing assistance. Thank You.
There’s so much more… there always is – encounters to recount, emotions to share. In time maybe I’ll get to them all. For today, though, I’m stretched out on a little sofa, watching Barbie and the Twelve Dancing Princesses (again), & thanking God that I have one more day to share with my beautiful little girl, anywhere that may be.