Saturday, 30 March 2013

2 Years

    Jacob has hit the large milestone of 2 years today!   Looking back, we never thought we'd see his first birthday, now we are given another year to celebrate.   His life has been spared through all the abnormalities which came his way this past year.  Praise God from whom all blessings flow.
The girls cards for Jacob
Peacefully sleeping this morning.  Thankful for this sleep, as now we are given the time to get things prepared for our families to come over tonight.   I wouldn't want to have a birthday go by without our families, as they have been such an incredible support over the past 2 years!!
       As we look over the past year, we see that the roller coaster ride has continued.  The ups of Jacob responding by smiling and giggling to his family :)  Those were huge ups.  We've also had ups with encouragements along the way.  Also, people upholding us in their prayers.  We felt upheld by those prayers many times.  Family and friends showered us with tokens of love.  Many meals were prepared with love.  Care and concern shown in many ways, none of which we take for granted, but thank God for placing love in their heart!!  We feel another huge up that we constantly are dealing with, is such a great medical team standing beside us.  We wouldn't be here if it wasn't for them too. 
Meghan, one of our night nurses.  What a great way to start off his birthday - with Meghan.  She is AMAZING!!  We love our 'Meghan' nights!!

          The downs were many.  Too many from a human standpoint.  Downs with such irregular breathing which continually is getting worse.  Downs with irregular temperature.  Downs with irregular rashes.  Downs with several pneumonia's, including a couple lengthy hospital stays.  Downs with feeding intolerance's.  Downs with great nurses leaving Jacob's case for another job.  Downs with pressure on family life.  Downs with the smiles and disappearing.  Downs regarding our ability to look at the circumstances instead of looking to God, the upholder and sustainer of all things.
This was a couple days ago, but I couldn't resist posting it.  Special daddy-son time.  
    

Wednesday, 20 March 2013

Unsure

      Unsure.  That one words sums up my thoughts of late.  Unsure what the future holds.  Unsure what tomorrow holds.  Unsure what an hour holds. 

     Unsure what the new developments mean.  Or, could I say denying the reality of what the new developments mean?  I wish I knew. 

     It was so exciting when we could wean Jacob off the oxygen last weekend.  What an encouraging step! 

      The oxygen-free stage didn't last very long.  He's back on 02.  He had a period today of bizarre breathing.  Scary breathing.  Thankfully my mom was here.  I can always use her calmness.   Thankfully the nurse came in when he was still gasping irregularly for air.  We're guessing it's another one of these things that are being mis-fired from the brain, but hopefully will find out tomorrow for sure.  How long?  How long, Lord?  

     Yesterday the CNIB therapist came to work with Jacob's vision.  She was extremely happy with Jacob's response in his 'little room.'  This has been a constant positive for him.  He responds amazingly in there.  Today, we placed him in there, simply because he was Mr. Cranky Pants, and we didn't know what else to do with him.  After some play time, he settled and went off to sleep for several hours.  We just never know!   
Sleeping so peacefully in his little room!


     

Monday, 11 March 2013

The Past 5 Days

It's hard to believe it's only been 5 days since I wrote the last update.  It feels like much longer!!  Much has taken place in just a mere 5 days.

Last Wednesday we had a meeting at the hospital with much of the team involved in Jacob's care.  It is so important to have everyone present and discuss things collectively.  I figured the team would expect me to go over the new developments, so Paul and I made a list before hand.  It's hard to believe how many changes we've seen in a month.  Personally, it's kinda scary!!   I feel so insignificant in meetings like that.  Here I am sitting with nurses/doctors/nurse practitioners/social workers/managers who all have many years of schooling and training, and here I sit, with...maybe not quite so much schooling!   

Some things discussed were:
     -Jacob's irregular temperature - he spikes fevers, but they disappear without Tylenol
     -increased irritability - it's continually getting harder to sooth him
     -oxygen level - his lungs are clear, yet he requires oxygen 24/7
     -'cycling' of legs - wow, can he cycle!! He kicks his legs in a circular motion for extended periods of time.  It usually goes hand and hand with irritability.
     -having periods of non-responsiveness
     -irregular breathing - sometimes he stops breathing for lengthy periods of time, other times he breathes really short breaths, then takes a large one, plus other breathing abnormalities 
     -sleepiness - at times during the day he actually falls asleep without the sleep med.  He's also sleeping much longer stretches with the sleep med at night.

These concerns were all summed up with the brain sending wrong signals.  That's what we were afraid of, but indeed it was confirmed.  We've pretty much exhausted medications, and there are no other treatments which would benefit Jacob.  How I wish I could control the brain.  Even a little bit.  Even a tiny bit.  But, it's so out of our control.  We just sit and watch, feeling so hopeless.
The palliative care nurse stated that she is unsure how long Jacob can continue this way.

How long can his body continue to fight for breaths?  How long can it continue to regulate his temperature?  How long will he be 'somewhat' responsive?  How long can he continue to be so irritable?
Yet, we are called to look beyond his trials and struggles.  We are called to look to Him who promises to NEVER leave us nor forsake us.  That's true for Jacob also.  He cares for him also!   I often think of Daniel's three friends in the fiery furnace, feeling no pain.  The same could be for Jacob also.  God is the same yesterday, today and forever! 

We were able to go away for a few days though.  We all came home more physically exhausted than when we left, but mentally, we felt refreshed.  We've never felt so clearly the need for mental refreshment.  It was tough leaving Jacob, knowing we were going to be a couple hours away, but we trusted God would watch over Jacob and provide him health and the nurses wisdom in dealing with him.  We were not put to shame!!

I picked Jacob up today from respite.  His primary nurse was working :)  She's a gem.  She knows Jacob really well, and is able to work with him in amazing ways. 
Nicole with Jacob, always a good day :)

Jacob playing with an emergency blanket. He loves it!!  I really should try to find one. 

Wednesday, 6 March 2013

A Little Get-Away

Jacob is going to respite today.  This is the first time in 2 months.  Talk about feeling like running a marathon with no break!!  I love the boy, but his demands are huge.  Huge for us as a couple and a family.


This afternoon we have a meeting at the hospital with the palliative care practitioner and our paediatrician and several others who are playing a large role in Jacob's care.  These meetings are vital as they get everyone's head together to talk about where we are situated, and where we are heading. No one ever knows for sure where we are heading, but it helps to know what the experts are thinking.  Hopefully we gain some insight.  A lot of changes have happened in the last month, so I'm curious as to what they have to say about all that. 

We plan on heading away for a couple days with the other kids.  This comes with more than a slight amount of mixed emotions!!  I would be content to stay close by the respite home, but the kids really need a change of scenery.  We told them this morning and, boy oh boy, excitement hit the roof.  The trip was cancelled last month, and at that time, I was so thankful for not telling the kids the plans before hand.  I would hate to see their disappointment!  We never want them to think that Jacob was a negative in their life!!

Friday, 1 March 2013

Smiles and Giggles Reappear

      After 2 months of never smiling or giggling, I'd ruled it out that we'd ever see Jacob smile (let alone giggle) again.  Yet, it happened this afternoon :)  I thought he was smiling, and to top it off, even in response.  I didn't want to get my hopes up too high, but then it happened...he actually giggled!  Not once, but twice!!  It melted my heart.  I could have jumped for joy.
      The physiotherapist and occupational therapist worked Jacob fairly hard this morning, so maybe he just felt good that his joints were loosened up.  It's amazing to see those two ladies work with him.  I do range of motion every day to some degree, but never have the same results as they have.  It's a gradual process to learn exactly how much pressure to apply and so forth. 
      I've found a video which we took a few months back.  Those giggles are forever written on our hearts!!  
video