Playing the waiting game...still!

Our little grandson Clay’s home ventilator was supposed to come in last week, but as of now, we’re still waiting. It’s been about three weeks now, and the company keeps saying “tomorrow.”

 I think they’ve hem-hawed themselves out of a client.  The doctor said they’re fired! 

It seems to me that we have a choice here.  We could fret about the incompetence of the health care system in this situation, or we could trust that things are working out for the best. 

Despite some frustrations, there are definitely positive things happening.  Clay is now 12 weeks old and is becoming more sociable all the time.  He has the cutest dimpled smile. 

The doctor ordered a MRI on Clay’s brain last week.  She was concerned that he might have scarring after being on ECMO for eight days during those first few weeks of his life.  The test revealed there was none.  There was some swelling around the brain, but the doctor said that isn’t uncommon in infants who have been so sick.  She thinks that will decrease as he gets older and stronger. 

Another echocardiogram was also done last week to check the condition of Clay’s heart--the aortic arch, in particular.

The cardiologist was so happy with the results of the test that he determined Clay no longer needs medication for pulmonary hypertension.  That is HUGE for a CDH baby.  Pulmonary hypertension is one of the greatest dangers to them.  We are so thankful for this wonderful news! 

The oral pathologists are having some really encouraging sessions with Clay as well, as they continue to work to push back his gag reflex.  A swallow test is in the very near future.  We are hopeful that he will quickly learn to breathe and swallow all at the same time, something that nearly all of us do without the least bit of conscious thought.  It would be great if Clay didn’t need that feeding tube by the time he comes home. 

Since before Clay’s birth, we’ve sought out blogs and websites about others who’ve had the CDH experience.  We’ve read some incredible stories of babies who’ve survived surgeries, reherniations, infections and all kinds of setbacks. 

The past couple of days, I’ve seen frequent blog posts about a little guy named Killian Kayne whose family is pleading for prayers for their son who is only a couple of week old. The doctors have said there is no more that they can do.  My heart aches for these families, but I consider it a privilege, and almost a responsibility, to pray for this baby boy, just as many who didn’t know Clay prayed fervently for his healing.  Sometimes all we can do is the best we can do.