It has been a strange day.  I try to live day to day in this life with the boys, knowing anything is possible, and to prepare my mind as such.  If you know anything can happen it is harder to be caught off guard or let down.  Today I woke up thinking I KNEW we were going home.  It was a rookie mistake, and unfortunately I wasted a day in a time when all days are precious.

What I haven’t told you is that L passed his first room air trial Friday night.  In fact, we were almost discharged Saturday, but as he sat there on room air Saturday morning, the Dr asked my comfort level and how things were looking. I said I wasn’t opposed to observing him another day to be sure it would “stick”, because L has a way of hiding his distress.  I kid you not, DURING that conversation, his stats dropped again and he couldn’t rebound without help.  As luck would have it, the Dr observed, my concerns were confirmed, and we agreed to give him another day and reconvene on Sunday.

As Sunday came and and went, we saw more of the same.  Stints on room air, bursts where he needed oxygen.  He was more alert, looking around, but still needed help.  Maybe he just needs oxygen until he fully recovers?  Maybe he needs it all the time now?  We can go home on oxygen with his current level of health.  Let’s observe another day and involve pulmonology and home medical equipment on Monday.

Monday I woke up confident.  Everyone else seemed to too.  Case management was on top of things, oxygen was delivered to the house, and a rep drove all the way to the hospital to deliver our travel tank.   We started talking about an exit x-ray, and follow up appointments.  I spent half the afternoon standing around with my virtual coat on and keys in my hands.  I even loaded our things in the car.  (PRO TIP – NEVER DO THAT UNTIL YOU HAVE DISCHARGE PAPERS!)  The x-ray returned, and that combined with my discussion with pulmonology spurred further disussion.  It looked the same.  If it was aspiration pneumonia, why wasn’t it worsening without antibiotics, and why weren’t we seeing signs in his bloodwork? (Those aren’t a must, but they are part of his history).  If it was viral pneumonia, why was it still there, just as strong as the last few days, while he seemed to be back to baseline.  And a question we’ve been asking of anyone who will listen…what about his cold temp, and dipping heart rate?  Are they related to the perhaps not so acute respiratory distress?  What are we missing?  A theory (re)emerged.  One that our home nurse has pondered as well.  Maybe all of these things are connected.  Maybe there is no virus, no aspiration, and instead, maybe L has been having cardiac distress, leading to pulmonary edema.  If his heart isn’t pumping efficiently, it can lead to fluid buildup.  And that can present as a respiratory issue.  The only way to confirm is to do an echo, and get cardiology involved.  So we’ll learn more on Tuesday.

Adding a potentially chronic problem weighed hard on me at first.  Not that an acute illness or  event is any “safer”.  Either can become life or death when it comes to L.  Honestly, I just didn’t wake up today “ready” for anything except good news.  I had decided what I wanted, what I needed, and wasn’t prepared for anything else.  That presents as optimism, but it plays out as entitlement.  And I know better.

There are meds to fix this, and the fact that we had the forethought and awareness to test , rather than send us home prematurely may be a life saving catch for L.  We could also be wrong, and the x-ray may just be trailing behind his recovery.  But we will know more soon.  And now that the dust has settled, I’m feeling grateful for the opportunity to check.

This is me getting my stuff back out of the car.  This is perhaps the hospital version of the “walk of shame”. 

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This is L, telling me to get over the pity party and distracted day, and get back to cuddling.

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So I did.  I set back up in the room.  I decided to get some exercise since I had spent the day hovering instead of moving.  So I went and jogged the hospital stairs (inside) for a few minutes. I grabbed a quick dinner.  Maybe it was the lingering glaze on my still puffy eyes, from the pity party.  Maybe it was the flat out sweaty appearance and wild hair I had from my attempt at a cardio routine.  But “Jimmy” from the cafe said “your frozen yogurt is on me tonight”.

Long story short, I’m not packing my bags early tomorrow.  I’m not waking up thinking I know where the day is headed.   And I will try hard not to waste a precious moment that could be spent cuddling.  I will, however, try to notice someone with puffy eyes.  And if the opportunity presents, I’ll buy their yogurt.

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