by | Feb 17, 2020

I haven’t always been great with change – I like things to be consistent, reliable, and constant – but we all know change is inevitable. 

However, there are good changes, right?! Like the changing of seasons – especially if we are moving into one of my favorite seasons – Spring or Fall. I noticed my azaleas last week have little buds on them already – in February!! Some daffodils have started to bloom – so the old wise tale must be right — Punxsutawney Phil didn’t see his shadow and Spring is coming early (Hallelujah!). So I have been dreaming of sitting on my back porch with Townes looking at the flowers and watching the birds feed in our feeder. I believe this change is coming too, so I will continue to wait in anticipation of the answer to this prayer.

The change I am still not very good at is the “unexpected”.  I am learning though with medicine these changes are inevitable and sometimes necessary as the doctors do their best to solve for the best combination of things for my son.  Each day holds something new, an adjustment for me, one that can at times take an emotional toll.

On Saturday, the doctors decided he needed a CPAP machine (Scott likes to tell people he snores too much like his Pops and his dog, Tucker!).  The hope was that the CPAP machine would help regulate the oxygen he was intaking which in turn would impact the work his heart was doing and bring his heart rate down.  The CPAP has worked marvelously as it has brought his heart rate down to his ‘target’ range and his saturation levels are in range as well. 

For us though, the CPAP means he is back on a feeding tube and has tubes/wires back on his face. So I can’t give him a bottle (which he always loves and receives like a champ) but thankfully and oh so gratefully he can still be held…small victories!  

Yesterday he was held constantly from 10:00 am to 6:00 pm so what a lucky little fellow and he enjoyed all the love!

We have also been adjusting some of his medicines and nutrition to reach the best place for him and I imagine these will continue to be adjusted as the doctors continue to problem solve for him.  

As a praise, we had a wonderful day of celebration yesterday as we learned our friends’ son down the hall from us received a heart! What wonderful news and we are elated with joy for them. They waited for just over 3 weeks.  Now Townes is currently the only baby in the PCICU waiting on a heart.

A nurse told us a few days ago that strangely enough hearts tend to come in 3’s…a little girl received one at the end of January, now our friends down the hall, so could Townes be the 3rd? We know the Lord’s goodness will shine upon us and our prayers for complete healing and a new heart will be answered, so we will wait. 

If you want to read a great article about the Pediatric Cardiac Unit at Vanderbilt, a friend of mine sent this to me. Pediatric Heart Transplant Unit.

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