Tuesday, July 3, 2018

Wrinkly Baby Belly!

Samuel seems to be recovering fairly well from his most recent surgery!  There is still a long road to walk, and lots of answers we don't have yet, but we are so beyond grateful that God chose to reveal the mystery of Samuel's GI tract!

Samuel has been requiring less frequent pain meds each day since surgery, and this morning - right as he was placed in my arms for morning snuggles - Samuel gave his first post-surgery smiles.  We had prayed just this morning that God would allow Samuel's joy to return, and He so graciously allowed that to happen!
Other good news?  The drainage from Samuel's G-tube has decreased and lightened in color, and the drainage from Samuel's ostomy has increased!  Both of these are good signs that his intestines are finally clearing out (after 2+ months!) and that things are beginning to move more in the right direction!  I cannot adequately describe how much better Samuel's belly looks.  It went from looking so round, like his skin was pulled tight around a bowling ball, to being soft and actually having a bit of a flat surface to it instead of a mountain peak!  His girth went from measuring 46 cm to now being 39 cm and still dropping!  This morning they clamped off his G-tube (which has been open to gravity most of the past 2 months) to see how he does.  If he does well with this, then we are one step closer to starting feeds!

Prayer Requests:

  • Pray that the inflammation of Samuel's intestines will go down quickly!  They cannot reverse the ileostomy until Samuel's intestines return to their normal size, and right now they are still at least double what they should be.  The surgeon thinks it will be 3-4 weeks at best, but could take longer.  We are praying that God will do this quickly!
  • Pray that Samuel's stomach and intestines will be able to handle being fed soon!  There is talk of possibly starting a trickle today or tomorrow if Samuel does well with having his tube clamped and everything else continues to look good.  We are asking God to give wisdom to the doctors as they decide on timing.
  • Pray that Samuel's pain and discomfort will continue to decrease.
  • Pray that when the custom trach comes in this week, it will allow Samuel to breathe easier.
  • Pray that God will take away the scar tissue in Samuel's aorta, and reduce the gradient across his mitral valve.  We are still waiting on a decision from the doctors regarding when surgery might need to happen for Samuel's heart, and we are praying that God will grant wisdom in this decision.
  • Samuel's intestines did not rupture!  I cannot count the number of times that I asked different doctors and the GI surgeon if we should be worried about his bowels rupturing.  It just didn't make sense to me that Samuel's belly could just continue to get bigger and bigger without risk for perforation!  Every time the doctors assured me that they couldn't burst without an actual obstruction present, and Samuel just had a Pseudo-Obstruction.  Now that we know he did have an actual obstruction, we (the doctors included) are so amazed and thankful that his intestines remained intact!
  • Samuel's trach caused some issues over the past 3 weeks!  Okay, that probably sounds odd...but if you remember, the tracheostomy was one of 2 long-term things Samuel needed to have done before they sent us back to Arkansas.  They were planning to send us back 2 weeks after that surgery if all went well.  So we would have arrived back in Arkansas still thinking Samuel had a pseudo-obstruction, but actually being at risk of rupturing!  God in His sovereignty...
  • God revealed the mystery of Samuel's GI tract!
  • Wrinkly baby belly!
Samuel's post-surgery belly!

This is His story, and it is all for His glory!

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