Wednesday, 26 February 2014

Lengthy EEG Stay

Well, Monday we arrived at the hospital for Jacob to undergo a 48 hour video EEG.  They place the electrodes on his head like a normal EEG, but this time a video captures every movement.  Also, at night he's been monitored for his oxygen.  After 48 hours, we are no wiser :(  He hasn't had one apnea spell yet.  They've now reduced his one seizure med hoping that he'll show us something.  I'm not hopeful.  It reminds me of a vehicle that is having issues, you bring it to the mechanic and it works perfectly! 

Jacob seems to enjoy all the attention because he's been giving the nurses plenty of smiles and giggles.  At least there is something positive going on.  Paul or I are called to be with Jacob all day and night, so it makes for an extremely tiring stay!  I long to be at home.  We originally told our kids they could come home on Wednesday after school, but they had the news that that wouldn't be the case.  That hurts the mother heart, even though I know they are very well cared for!! 

Hopefully something is revealed tonight, so we can head home tomorrow!!! 

Tuesday, 11 February 2014

Smiles, Smiles and more Smiles

Last October we were privileged to get a few smiles one afternoon, but overall, it's been A LONG time since we've seen consistent smiles...until now.   A couple weeks ago we reduced his calories in his formula and it seemed to make a world of difference for his overall demeanour.  He's happy much more often, more settled and giving us plenty of smiles and giggles.   Oh what joy that brings to this house hold!!  To hear giggles instead of crying.  It's been very uplifting for everyone here!!

Even though this picture is blurry, I can hear his little squeal when I look at that face :)
Even though it's GREAT that we are seeing all these smiles, it comes along with a large concern.  With the reduced calories he can't sustain his weight.  With no sustaining weight gain, his organs are put under stress, which leads to even more complications.  So, we are going to have to make a decision in the coming week or so what direction we want to travel.  Increase his calories so he'll at least maintain his weight, but have him much more irritable (and a host of other issues,) or do we allow him to be happy with reduced calories?

It is such a blessing to have God's word applied personally in a sweet way.  Several weeks ago in church we sang several verses from Psalter 383.  While I was singing verse 2, my thoughts wondered over to Jacob's life.  It brought so much comfort that day and many times since.  His life is in God's perfect plan.  Even in these trials and tough decisions, God is present, a very present help!! 
Psalter 383:2
Ere into being I was brought,
Thy eye did see, and in Thy thought
My life in all its perfect plan
Was ordered ere my days began.

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!!