*If you keep up with the boys solely on this blog – I want to point out that when I don’t have a lot to say (which is often) or especially when I’m feeling lazy (which is “oftener”) I may just do a quick post or update on Facebook.  So if you’re wondering what is going on and I haven’t posted here in a while…check out Their Page. *

We had our first outpatient visit on the journey to moving the boys’ care to a new hospital.  I’ve explained this switch previously, but in summary, it is a little closer to us, but a lot closer to friends and family, both of which can be important in a critical illness.  We were happy with the service at the last place, this just makes sense logistically.

Today’s appointment was with Pulmonology. A follow up for Landon after his January in patient stay, and a new patient establishment for Nolan.  The discussion went very well.  This Doc is all action!  She is happy with our respiratory routine for the boys, and suggested a few tweaks, or potential moves we can make in the future if needed.  Something Darra and I have been wanting to move toward was also on her to do list…a sleep study.  For Landon in particular, we want to understand if he has apnea, or is perhaps such a shallow breather that CPAP would be beneficial at night to help him inflate his lungs better.  There’s a chance, but no guarantee it could also help point to what we believe is an elusive cardiac problem.  That should be scheduled in May, with our routine follow up in June.

On the way there I had mentioned that I was already tossing around ideas for their Third birthday party.  Something themed around music or water, so we can one again focus on things they enjoy. 

As the doc was making her way through the physical exam, she started very matter of factly, but very casually asking about our end of life planning, and if we knew what we would want to do in certain circumstances.  I told her we have had difficult discussions, and met palliative care in the NICU before the boys were even a month old, and again during PICU stays.  So yes.  As much as one can “be ready” for such decisions.

I brought that up on the way home and D confirmed this is probably protocol for establishing a new patient with this severity – particularly in pulmonology or cardiac, but I was a little caught off guard.  It’s hard to explain, but sometimes I forget.  We haven’t had a serious scare in almost a year.  We’ve worked very hard a few times to escape hospitalizations, and Landon had a minor one earlier this year.  But all in all…we have a lot of good days.  I didn’t say “typical”.  I didn’t say “easy”.  But good.  And I mean it.  Reality is always there – expectations are known. But they don’t drive who we are or how we live.  That is too heavy of a burden to even try to carry.  So I leave it behind and only visit it when I must.

As a matter of fact – today was also a good day. We had a smooth trip, safe travels, met a good doctor, had some smiles along the way.  On the way home, D confirmed I should get back to planning that 3rd birthday party.  And I have.

 

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