Our daughter Hannah was born 11/22/17. She's our fifth baby and a welcome surprise caboose for our family. At 6 days old she was diagnosed with a rare condition called cricopharyngeal achalasia, also known as cricopharyngeal hypertrophy, bar, or narrowing. It is a congenital defect involving the upper esophageal sphincter muscle that is too large and impairs the swallowing process, kind of like a pinch in a hose.

At 8 days old Hannah underwent a procedure to dilate her esophagus and reduce the muscle with Botox injections, but unfortunately, the procedure was unsuccessful. On March 16 she had a myotomy of the muscle, and she is now able to swallow. After 4 months on a feeding tube, she is finally able to eat by mouth.

This is her story that is still being written.

Saturday, December 2, 2017

On being in the hospital

Part 3.5

One thing I learned right away about the hospital experience is that everything takes forever, and "soon" means any time in the next 3 hours. Or it could be in 5 minutes.  "The doctors and residents will be rounding soon" means between 9am and noon, and "you're next" might still be in 45 minutes.  Waiting for a procedure takes all morning, and waiting for the results takes all afternoon. Leaving for surgery will happen 2 hours after the scheduled time. And if you're waiting to take that shower or hit up the cafeteria, something will happen the moment you step out of the room. 

As a parent, you don't want to miss anything happening or the chance to ask questions when the doctor does pop in. It makes you feel somewhat paralyzed. The inability to leave, change gears, even take a nap or take 15 minutes to pump without someone walking in.




My constant view
For me, feeling helpless and worried sick about my child put me in such a funk that I didn't want to do anything at all. I didn't feel like reading.  I didn't feel like sleeping.  I didn't feel like playing a game on my phone.  I didn't feel like watching TV.  I didn't even think to eat or feel hungry.  Nothing.  And with time and progress crawling at a snail's pace, it was SO BORING.

Also, it was hard not to look around and see dollar signs piling up on every piece of equipment, every morsel of food or medication, every disposable plastic thing. Every time the nurses scanned something before using it or administering it, I knew it was getting added to our bill.  And what is the base room rate at this B&B going to turn out to be anyway?  Try not to think about it, Jenny.  Does it matter how much it costs?  Does it matter if I will ever be able to pay it off? No.  It doesn't.  Does Hannah matter?  Yes. She does.

My experience was to pump every 4 hours and then wash my pump supplies.  The nurses brought me drinks or snacks.  I ordered 3 meals a day, but they took 45 minutes so I had to plan ahead before I actually felt hungry, and then sometimes my tray would come and I wouldn't even have an appetite to eat it for an hour or two.  I gave the nurses my dirty dishes.  I exchanged pleasantries with the housekeeping staff when they emptied my trash.  I surfed the TV channels for something better than Family Feud.  I held the baby and got tangled in her IV, feeding tube, and oximeter cords.  I watched the baby's heart rate and oxygen levels.  Then I gave the nurses my dirty dishes and started all over again.  I perked up whenever a nurse came in for vitals or a doctor stopped in to give me a 5 minute update on the progress for the day's goals (of which we would likely accomplish only one or two because everything takes so dang long).  The nurses were fun to talk to.  We often chatted about regular stuff, including McDreamy vs. McSteamy. (even though Grey's doesn't remotely resemble actual medicine, every nurse is privy to this debate and has an opinion.)  

Each step of the way I met professionals whose whole days were spent doing just one step of this process: taking meal orders over the phone, delivering meal trays, sweeping our room, escorting hospital beds or cribs from their room to the surgical wing, processing patients for surgery in the pre-op holding room, updating family members in the waiting room, guarding the door to the pediatric wing, and so on.  And many more processes I was not even aware of.  

Nurses came and went on 12 hour shifts, reporting for their work day and then going home.  Everyone has a very specific job and they only encountered Hannah and me for a brief moment, and we became a short-lived blip on their dutiful work-day.  Because its a day at work.  And everyone I encountered, regardless of their role, was genuinely concerned for my child's wellbeing and recovery.  I'm incredibly grateful for all the well-oiled cogs that make up our modern, first-world hospital system.  I may only cross paths with them briefly, and some of them play smaller roles than others, but they are all essential and important. 

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