Never Lonely

Never Lonely

Wednesday, June 25, 2014

Just Another Manic Monday

It has been over a year since the last update, and I’m feeling “bloggy”. Enjoy!


Audry @ Home
        Just to recap for those that have missed the updates, or aren't on my personal face book page. Audry has been sick a couple weeks. Nothing too dramatic. Stats stayed decent only dropping to 90 at their worst. Fevers were high but manageable. She had a follow up appointment as she wasn’t getting better. We all know it's not uncommon for Audry to take more than a couple weeks to fight off a bug. Monday we went to her follow up. The appointment took FOREVER. I was at my wits end. Sometimes Madigan being a teaching hospital is a pain in the ass. Since, her doctor is on leave—again, that’s another story—we of course got slotted with a resident. I love teaching people about SMA, especially up and coming doctors. What I don’t like is repeating myself, and spending an hour going over her medical history, just to turn around and repeat it all again when the actual doctor comes in because they want to see for themselves, already annoyed at this point we were pushing 2 hours, they call in “dr. house” i.e. infectious disease specialist. This lady wanted an X-ray and labs. Frustrated because Audry has now been off bipap for 3 hours, and it’s time for her treatments, not to mention we have a 40 minute drive home if we are lucky enough to miss traffic. At this point I start to get mouthy. I agree to come back tomorrow for labs and grab an X-ray on the way out. We got the x-ray and set off for home. These damn appointments take forever. We showed up at 1330 and didn’t leave until 1730.

       On the drive home an unknown number calls my phone. I ignored it. Another unknown number calls but I recognize “(968)” and know it’s the hospital. So reluctantly I answer. It’s Dr. House and she’s adamant about an admission. Get out of here lady—aint nobody got time for that and besides her o2 is fine. She’s at 96 and she’s asleep, bite me. She then proceeds to go off on a tangent and the only thing I paid attention to was that her left lung was “whited out”. The first thing out of my mouth is right her a script for oral antibiotics, after all she still looks great, then I realize that whited out likely means collapsed. At this point I tell her fine, but I’m stuck in traffic and need to go home and grab her machines. So I called Brandon, made arrangements for Emery, and continued my route home. I pulled in to the house, packed up everything except the kitchen sink and we headed to Madigan.

The Ugly Xray
         I told them we’d be here around 1830. Yea it ended up being 1930 but we made it here none the less. Audry wheeled herself in stunning every nurse on duty. After all, they had seen the x-ray and were expecting a kiddo in full blown respiratory distress. Audry was smiling and wheeled herself in. They took labs, asked a bazillion questions, played with Audry, did her treatments and we were “Settled” around midnight. I saw the x-ray for myself and was honestly impressed. You see that black thing, it’s her right lung, generally people have two, which brings me to the white thing, and it was a tossup. Docs thought it might be puss, or a collapse, or a combo of the two. At this point I’m freaking out. I thought she was fine. I wanted to keep her home. I’m going to go with it was a mood because for a second I questioned my judgment. Then I realized that everyone was as surprised as me that she was indeed terribly sick. She’s been on q3 for treatments since we arrived. I’ve done roughly half of them. She’s pissed, and annoyed, but coping in her own way. She gets mad, yells at me, then won’t talk to me…but if the RT does it she cries for me, begs me to do it, and cooperates. So now I just let RT do them and I take over when she wants me to do it. All craziness aside she’s doing amazing. Still hasn’t dropped below 90, x-ray’s look clearer everyday (still trashed but getting better for sure), and we’ve gotten smiles for dayzzz.

All three PICU stays at a glance <3
        This afternoon we got the ultrasound results back, NO FLUID in or around her lungs. This is great news! A chest tube would’ve been a heart attack on my part. Her upper lobe is still has a “significant collapse” I’m assuming the left does too because it’s still all white. We can almost make out the silhouette of the heart. The plan is to get the junk out, attack the bug with aggressive antibiotics, inflate the crap lung and go the hell home. We are still waiting on viral, bacterial, and sputum cultures to see what caused the mayhem. Her right lung is doing all the work and doc says it’s hyper inflated. I compare her right lung to the incredible hulk. It beefed up to save the day cause the left lung tapped out. Clearly I’m delusional and desperately need sleep because I even imagined the lungs talking. The right one telling the left lung “I got you boo, sit this one out”.  It’s been a little over a year since her last stint in intensive care. I will say the staff has been pleasant and it seems they have figured me out. Stay out of my way and no one gets hurt—okay I’m exaggerating a smidgen—stay out of my way and you won’t have to call social work and tell on me. ;)



Embrace The Suck