Monday, June 18, 2018

Cardiac Cath

Samuel's days have been back and forth since Thursday.
There have been some not-so-good moments - such as Friday night when we stayed at the hospital until 1 am because sweet Samuel's body was struggling to settle down.
There have also been scary moments - like when Samuel dislodged his trach and we heard him audibly cry (my first time to ever hear that in person!), which unfortunately isn't a good thing.  We were very thankful for having a quick-acting medical team at that moment!  And thankful that Samuel recovered well from that incident.
In the midst of it all, God also blessed us with some amazing memories that we will cherish - such as Sunday afternoon when Samuel happily laid in Daddy's arms for 3 hours and gave us lots of smiles!

They think that these episodes are being caused by discomfort Samuel is experiencing.  His belly has been moving a lot, and we think he has been passing some gas (which seems like a good sign!), so he is probably experiencing gas pains.  His trach site is likely sore as well, and may be cause for irritation.  Once he gets himself worked up, he has a hard time bringing his heart rate and respiratory rate back to his baseline, although this seems to have gotten a little better over the weekend.

Samuel is enjoying being able to sit up!
He is learning to move his head back and forth all on his own!
So we continue on our roller coaster ride, keeping our hands up in praise to our great God who has graciously given us another weekend with Samuel!  We know that every day is one day closer to home.  And we continue to experience God strengthening us when we feel too weary to move on.

Today Samuel is scheduled to have a cardiac catheterization.
This procedure will serve two purposes.  First, it will allow them to measure things like pressure and oxygen levels in Samuel's heart.  This will give the medical team a better idea of the time frame for Samuel's next heart surgery.  They are hoping that it won't be until he's 9-12 months old at the earliest, but they want to make sure that it's not imminent before sending us back to Arkansas.  The second thing this will allow them to do is check for scar tissue in the aorta.  It is not uncommon for scar tissue to form where they patched the aorta during Samuel's heart surgery, and the last echo they did seemed to indicate that there was a mild narrowing of the aorta probably due to scar tissue.  If they determine today that there is scar tissue they can use a balloon to break it up, and 80% of the time it won't present any more problems.

Please pray:

  • For Samuel to do well with the procedure today!  He is not usually a big fan of "field trips".
  • That if there is any scar tissue, they will be able to break it up and it won't cause any more narrowing.
  • That the bands on Samuel's pulmonary arteries will continue to serve their purpose well for quite some time so that Samuel can wait as long as possible for his next heart surgery.
  • That there won't be any complications from the procedure today.
  • For Samuel to be able to rest well, without pain or discomfort.
  • For Samuel's surgery sites to continue healing well, without infection, and that they won't cause him discomfort.
  • That Samuel won't require extra sedation, and that they will be able to get back to weaning his scheduled sedation, which will hopefully help his gut motility.
  • That God will continue to give wisdom to the entire medical team as they decide what is best for Samuel.
Praise God:
  • For 16 weeks (tomorrow) with our precious Samuel David!
  • For the gift of sweet memories that we get to share!
  • That we are able to hold Samuel (almost) every day!
  • That Samuel did really well with his therapy session today after missing out most of last week due to discomfort!
  • For the blessing of being able to stay in the Ronald McDonald House this whole time!
  • For God's continued provisions!
  • For new friends we have made while in Delaware!
This is His story, and it is all for His glory!

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