Once upon a time we were supposed to go on vacation…
I spent all last week working a builder show in Orlando, FL. Our plan was to head to the Florida Keys Friday morning to camp and check the waterfront restaurant called Lorelei Restaurant & Cabana Bar off of Lorelei’s bucket list. (I mean, they even have a kids mermaid shirt that says “mermaid in training” - and little girl who can’t walk is definitely that!) Then we were going to be coming back to Orlando for 5 days of Disney World magic. We even had coveted reservations for Be Our Guest (because I hear the grey stuff is delicious!)
Thursday I got a call from Grandma saying Lorelei wasn’t well and that I needed to come back to our condo to check on her… zoom forward a bit and I skipped my last work function to take Lorelei straight to the nearest children’s hospital. They took us back immediately due to calls from our docs at home, Lorelei’s disease and her overall state. After running some tests, the doctor came in and dropped the ultimate F bomb: Lorelei has the flu. My heart shattered into a million pieces. Prior to that moment I was legitimately hopeful this would just be a false alarm, they would look her over, tell me I am crazy and we would head out to our much-needed vacation. But no. It quickly became fight or flight mode and this flu could kill her.
We were admitted to the Pediatric Intensive Care Unit (PICU), far from home, in a children’s hospital in Orlando that we google-mapped to find. (Read: we knew nothing about them, their docs, their protocols, their history. We just needed a hospital. And I was hopeful this one served iced tea and lemonade upon arrival! Spoiler alert, they don’t.)
How the hell did she catch the flu?! We are so cautious and are never around anyone who is sick. Plus she got her flu shot. We all did. But that didn’t matter apparently. Her little body is working hard to fight off the worst virus it’s ever fought, all while trying to maintain it’s every day functions. The flu may not sound scary to normal people, but it can be a death sentence for someone as fragile as Lorelei.
Friday was a bad day. The kind of bad day that parents of medically fragile kids fear in their core. The kind of bad day when a doctor says “I am so incredibly sorry we are meeting under these circumstances. At some point we may have to talk about those big scary, life or death decisions.” The kind of bad day when you cry every time you talk to a stranger and sob every time you talk to a loved one.
The weekend had to be better than Friday, it just had to be… Between blown IVs, blown arterial lines (and a lot of terrifying blood), way too many pricks, sticks and draws, zero (and I mean ZERO) sleep for lorelei or mommy, ups and downs, good labs and bad labs… the weekend was an absolute roller coaster. Michael flew in and I was able to escape the hospital for a few hours. (For a bit of a break but mostly to figure out logistics, cancel Disney vacation plans that I spent a year planning, figure out where we will stay, etc) and to have a glass or two of adult beverages with my friend who was stranded here with us (because our key west weekend plans hit the fan!)
Medical mom life is the toughest thing. It’s exhausting, it’s raw, it’s full of ups and downs, it’s checking in with your mom-gut when docs are talking science and medicine. It’s crying, praying, running on adrenaline, eating the crappiest hospital food ever. It’s holding your child down on a table while people do things that would be consider torture if you were in any other setting. It’s listening to the mom two doors away wail when her son passes in her arms, thanking Jesus it wasn’t you this time. It’s putting the fakest-sincerest smile on your face when you are in front of your kid because you want her to believe this is an adventure and everything is going to be okay.
Lorelei’s condition is a rare one, so we need to be surrounded by doctors who understand that and want to work as a team with us and our docs at home. Thankfully we ended up what seems to be a great hospital with very encouraging and open minded staff. They have listened to us and supported us. This morning a new favorite nurse that we have had twice now, stayed late to go buy Lorelei two Disney balloons.
We will probably be stranded here, 12+ hours from home, wasting an entire years worth of Disney World planning, in a hospital full of doctors we don’t know, for at least another week. Maybe more depending on how she gets through what seems to be a 7-14 day flu.
Thank you for all of your prayers, messages, texts, emails, deliveries, calls, and love. I’m blown away and start sobbing every time I think about how big our village is and how many people are praying and rooting for our little girl.
Now that I have actually slept for the first time since the four hours of sleep I got on Wednesday night, I feel a bit more confident in writing so I will try to keep everyone updated. With hope…
