It is finally a peaceful moment. Jut and the kids are napping. The last 48 hours have been absolutely crazy, and coming off of the Univ of Minnesota trip....needless to say we are running on fumes. I woke up and wondered who was in the ring with me this past week, because I felt beat up!
From where I left off, Day 4 of Minnesota was surgery. We arrived at 5:30AM to the hospital and J went in at 7:30 and B at 9:30. They were under anesthesia for 4+ hours. They each had an ECHO, MRI, ABR, J got new tubes, Spinal taps (lumbar puncture) to check pressure and draw fluid (pressure: B was 22 and J was 14), Blood drawn, and urine collected. They checked their weight a dozen times, took their temp a bunch, measured their heads, and attempted blood pressure a number of times throughout the week. At 3:30, we were back in the hotel and the kids were doing well. We packed and went to bed early.
Thursday May 19, we jumped on a plane (after getting a bit lost) and returned home. We arrived at 12:30, I jumped in the shower, Jut mowed the lawn and I drove down to meet the team setting up for the blueprint launch party at Mickey Finns. When Jut was driving down later that night, Brooklyn threw up. He drove home, cleaned her and the car and made his second attempt to get there. She puked again. Round two. Cleaned her up, got Erin Carlson (a great friend in college who came through in the clutch-thanks E!) and tried again to get there with J. Round three-different kid. Jayden puked all over himself! So now Jut is at Mickey Finns and a number of us are cleaning puke off Jay. Steve Habel (thank you!) stepped in and drove Jay back home and Jut and I cleaned up and went back in.
The event was AMAZING and I want to write a seperate blog about it (this is just the background) but the short version, over 100 people, over 60 pledges, over $6,000 of one time donations, and an overall BLESSING of friends and family. Had it not been for the puking-it is the only place we would have wanted to be.
It is hard. As great as it was-the reason we were there-the kids-it was hard to not be worried and want to be comforting our kiddos.
We got our chance to do just that a few hours later. We got home to two sick kids, called the dr and by 11:50 that night we were sitting in the ER. More iv's temperatures and blood pressures, more height and weights, more vomit, more explaining Sanfilippo. How do you emotionally navigate this?! We just left our family of support and now we are smacked by the desperate needs within minutes. It's like watching a video for starving children...and minutes later, being in Africa watching them starve.
We got home at 3:30AM and slept for about 2 hours. Ding ding ding....round 4. Up I was bathing the kids and trying my best not to loose it. Lack of sleep and me don't mix. Jut went to work and we juggled the kids between Joan and Jut and myself as they puked, moaned and slept. we called the dr again because the kids were not getting better.
Round 5. Back to the ER. IV's temperatures, blood pressures, surgery reports...
PAUSE, may I voice my frustration for one moment? No-my address, phone number and insurance has NOT changed since this morning when you discharged me. Sure you can weigh him but I just TOLD you his weight. NO you may not take my daughter's temp rectally. That is just wrong-esp when I know she doesn't have a fevor. And, by the way, why do you even chart anything? I mean, you will just ask me every SINGLE time what medicine they are on, what surgeries they have had, and how to spell Sanfilippo anyway! AUGH ... (thanks...I needed that!)
Back to the night. Thank you Joan for coming with me this trip. Jut needed rest so he tried to sleep for a few hours and drove down to relieve Joan at midnight. We left at 1 and were all asleep by 2AM.
Round 6. 6am the kids are up and doing better. The house is a disaster and of course smells like puke. I ran out of paper towels and laundry soap, two things you need when your kids are puking. But-so far so good! No puke yet. The kids and Jut are sleeping and the kids even ate and drank a bit! So-by my estimation, we MAY be able to report a new address by our next ER visit!
That is unless, Jayden decides to eat a spork like he did last Tuesday! HA! great times!
Later tonight, I have to pull myself together so I can be Angie Devore's date to a wonderful black tie event for Make-A-Wish! I am honored---I hope I don't smell like vomit :)
Please don't miss the voting info below and I will write another BLUEPRINT post when I have more time and info! Thanks for taking this crazy journey with us!