Wednesday, 5 February 2014

Some Thoughts

    It's been a while, once again, since I've blogged.  It has been a time of so many thoughts and experiences that it's hard to find the words.  I'll try to accurately write what's been going on.

     First off, Jacob's EEG results have come back with somewhat negative results.  His seizures are occurring in a part of his brain which have never seized before.  According to our paediatrician, this makes sense for his condition, but it's not a positive one.  We are once again faced with signs of regression.  Where we go from here is an unknown.  We are to meet with the neurologist soon to discuss our options.  One difficult point regarding Jacob's seizure activity  is that a typical EEG won't pick up any seizure activity from the brain stem.   So, many of Jacob's abnormalities could be seizures but we have no way of concretely knowing.  It takes a surgery to place a prod by the brain stem to read brain stem seizures.  Considering surgery is basically not in Jacob's dictionary, this is not an avenue we are willing to travel.  Once again we are called to live a life of uncertainty, from a medical stand point.  It's a good thing we know that God has all things in His control and that nothing is hid from Him.  What He wants us to know, we will know. 

      Jacob's had an increase in apnea (not breathing) spells.  Yesterday alone he had 6.  This comes as an enormous concern.  They last for up to a minute, with his oxygen saturation levels plummeting to an extreme low!  These spells also make sense considering the part of his brain which is so compromised, regulates breathing.  If only there was something we could do about it.

      His concentration of feeds have been greatly reduced to alleviate constant vomiting and retching.  So far so good, but...his body needs more calories than we're currently giving him, so it feels like we are truly between a rock and a hard place.   The plan is to slowly increase his feeds to find out when the intolerance kicks in.  This step comes as a painful one because his smiles have returned.  We believe he feels much better with a lower calorie intake.  Time will only tell.

     Yesterday marked Jacob's one year mark since his last pneumonia.  Last year we had said our good-byes to him, we were watching him slip away from our grip, yet, one year later we are still able to love and care for him.  What a blessing!  What a gracious and merciful God, to supply us far beyond what we ever thought possible.  

    It's also been a tough winter with so many night nurses cancelling due to weather.  This makes for long tiring nights and exhausting days.  We just get our feet under us and then we get a call that the nurse isn't coming.  Some nights we've been thankful she didn't come because driving was truly treacherous.  It's sure been a long, cold, snowy winter! 
The relationship these two boys have, truly melts my heart.  This picture was taken before Jacob's smiles returned, but you can see how content and happy he is with his brother right at his side.  Caleb goes out of his way to give Jacob toys, especially if Jacob's sitting in his chair.  Caleb wants Jacob to 'feel' things.  That's something we've never taught Caleb, it's just in him :)

This may just look like a sleeping Jacob, but there's more to this picture.  We've been blessed to have a couple of fantastic nurses in Jacob's care now.  The one will often go the extra mile (or two.)  This particular morning, she left and I discovered Jacob was hugging one of his teddies.  To most people that token of love would mean something, but for us, it means tons.  Here's why...every different position Jacob's in, benefits his muscles/bones.  Even a slightly different position gets his muscles working in a different way.  The saying goes, 'it's the little things that count.'  It's so true!!


1 comment:

  1. Dear Paul and Joanne - I had no idea that you blogged, Joanne! What a blessing to be able to follow developments this way. And what a marvel that on the very morning I woke up thinking, "We need to visit Paul and Joanne..." someone sent me the link to your blog, acquainting me with it. Thanks for sharing your heart and thoughts with so many of us. We'll try to return the favor in prayers. With Christian love, Pastor & Ruth