Hospital stay-Day 15

The title of this post alone makes me sigh.  15 days is a LONG time to be living this life.  I am trying to take the advice of others that have walked a similar path: to take each day as it comes.  It is good advice.  I need to take things as they come and trust that God will give us just enough for each day.

Here is the latest on our little man:

  • We are off high flow nasal cannula.  This is a big step.  Ezra could not have come home on this.  The equipment required is not allowed in homes.  Today he is on 1.5 liters of oxygen through a regular nasal cannula.  (to put into perspective-he was on .25 liters at home before)
  • We are doing CPAP at night.  We will do this long term.  We will get a sleep study in the coming days to confirm our apnea episodes.  We are thinking he will have both obstructive and central sleep apnea.  This confirmed diagnosis will allow us to have the CPAP at home.
  • Ezra will have a swallow study in the morning.  The results will determine our next step.  Our pulmonary doctors think Ezra is at high risk for aspirating.  They think finding an alternative to feeding him by mouth may be what is safest for him.  We will go from there tomorrow.  We may be having a G tube placed into Ezra’s tummy.  It would be a long term feeding solution.
  • After tomorrow Ezra will be transferred to Heathbridge Children’s Hospital.  He will recover there and they will train us on how to care for him at home.  It is like a nursing home in a sense for sick children.
  • We received Ezra’s genetic test results.  There were 3 major findings.  We are reading up on the very little information there is out there.  We meet with the genetic doctors in late May.  After we have some time to understand this and process it as his parents, we will share those details.
  • Ezra has been ours since January. He has to live with us for 6 months before the adoption is finalized.  That should take place in July.  We are almost there!
We will keep you posted this week.  Thank you for the prayers, meals, hugs, and encouragement!  We have needed it!

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