Saturday, 26 January 2013

Painful Memories


      After noticing somewhat consistent discomfort when Jacob's right hip was being moved, I took him to our paediatrician yesterday.  Thankfully Breanne had a PA day, so she came along.  After the doctor examined him, it was decided to have some x-rays taken of his hip and femur.  He informed me that it can happen when kids never bear weight on their legs, that their bones can become brittle :(  Dr. Kerr wanted to make sure that he doesn't have a fracture. 

     I presumed we were heading to the London Hospital, seeing that's where we have always gone for every test in the past.  Thankfully something came out in our conversation that we could go to the St Thomas hospital.  It sure made life much easier regarding distance.  The hospital is only a scant 10 minutes from the Doctors office.

     Suddenly it occurred to me - am I ready to step foot in that hospital, seeing that's where our journey began with Jacob?

     Providentially Breanne came with, or it would have been even harder on me. 

St Thomas Hospital
      I drove into the parking lot, almost parked in the exact same spot that we parked in when I was in labour with Jacob - oblivious of the path we would be called to walk in just a few short hours.
     I walked into the hospital yesterday, through the same doors that we travelled through almost 22 months ago.  Soon to be dealing with the reality that our son was 'not behaving.' 
Our first sight of Jacob

     Yesterday, we went in the same elevator that the transfer team took our little boy away in, when he was just 4 hours old. Those closing doors - doors separating our little suffering, yet so sedated, bundle and us. Then the wait! That wait to find out what was happening with Jacob and Paul and I. 
The transfer team with Jacob in the elevator

     I had to register Jacob at the client services department before we could get his x-rays yesterday. Another painful memory!  Memories came floating past.  One riveted in my mind. I had to go to client services to preregister for Jacob's birth several weeks before he was born. Considering he was our fourth, it was kind of old hat. One question that the nurse asked me in that registration was, 'do you know if you are having a boy or girl?' We never wanted to find out, so I matter of factly said, ‘No, and to us it doesn't really matter, as long as the baby is healthy.' Healthy - how that word has taken on a different meaning.
     After the x-rays, I walked down the same hallway and doors that I got wheeled out on a stretcher on the way to London, to at least be in the same hospital with our son. Thankful that I was finally on the way, yet,  apprehensive as to what we were going to face. As the creaky OLD transfer van neared the London hospital, my thoughts raced as to what the outcome of this boy hooked up to all the machines would be. How can I do this? Is this really happening, or is this a dream?
      Reflecting on those thoughts that I pondered many months ago, I realize that indeed the way has been tough.  Tough beyond words.  Yet...we have been upheld to this very moment.  Yes, sinking in the waves at times (many times) yet during the toughest times, having so much peace and contentment with God's path.  He knows best, and His plan is perfect.  I still sometimes look intently at Jacob in amazement that we have been given a special needs child.  At times, it still feels unbelievable. 

Wednesday, 23 January 2013

Emergency Visit

To say we never know what a day may bring may simply be an understatement some days.

Yesterday morning, the nurse left leaving us a 'stable' Jacob.  About an hour after she left, I picked Jacob up, just to discover he was burning hot.  The thermometer confirmed my thought - he was running a mid- high grade fever.  Every 5 - 10 minutes that I would check, it had gone up another .3 - .5 degrees.  I was on the lookout for anything else that would cause an alarm.  All day he battled.  His lungs were clear, so a pneumonia was highly unlikely. 

Several minutes after the nurse arrived at night, we heard a popping sound and then moisture gurgling.  We realized that it was coming from his tube site, just to discover it was oozing blood.  After calling the hospital, it was concluded that an emerge trip was wise.

The night nurse came along because he was also vomiting, and once there was blood in it. 
After several x-rays, they still were unsure why he was running a fever, and why he had all the blood around his tube site.  He was prescribed antibiotics, just to make sure if he was brewing anything that they couldn't see.

Overall, he's been quite irritable when awake, but also sleepy (after only sleeping about 2 hours in the past 24 hours.)  In the whole grand scheme of things, we look at this as being another speed bump (not a speed mountain) along the way.  It's just another reminder how frail his life is. 

Every day we are able to watch him, hold him, sing to him, care for him, even sit in emerge, our love grows for the little man!! 

Monday, 21 January 2013

Home from Respite

6 days come and go fast normally, yet so much faster it seems when we are miles behind in the motherly/wifely duties and cares it produces.

We enjoyed the flexibility to get up and go as a family (as our family of 5.)  We try to do something special with the 3 kids when Jacob's at respite.  This time, we went tubing.  The kids enjoyed themselves so much.  It's amazing and rewarding to be able to see them still be kids - to be able to put the trials they encounter with Jacob far behind them. 

It was an up and down admission at the respite home regarding his sleeping and fussiness.  It's so hard to figure him out!  I was hopeful that they would have answers for us, but not this time.  The nurses say that mothers know their kids the best, yet I was quietly hoping that they could put their finger on something. We love the care they provide Jacob with!!  Their child life room is AMAZING!  It has hundreds of toys and sensory stimulants to keep the children happy and busy with.

On the way home today, he was occasionally whiny.  Caleb sits right beside him in the van, and lovingly took Jacob's hand in his own :)  Jacob responded by quieting down.  I believe he loves the touch of his brother.  Precious indeed! 

Now it's time to get back into routine, as our family of 6.  As much as it brings many trials of varying degrees, we're all thankful to God for sparing Jacob's life to this point.  His ways are far above our ways!!



Monday, 14 January 2013

A Day in the Life of Jacob

Here is a day in the life of Jacob, thanks to a camera.  Thankfully it was a great day, regarding his irritability!  It makes such a difference!!  Not everything is captured by pictures, but most things are.

 8:06 - peacefully asleep
 9:51 - still asleep
 10:54 - wow - still asleep!
 11:00 - time for meds
 11:03 - Jacob's tube extension needed to be replaced.  It must have been leaking in the night, because the nurse left the old one on the counter.
 11:03 - ready to put the extension on
 11:04 - extension on and water flushed through
 11:04 - we're ready for meds and feeds
11:06 - meds given
 11:06 - finally awake!
11:24 - bath time
 11:33 - time to dry off
 11:35 - weight time (still no gain!)
 11:42 - relaxation - he loves the bean bag chair!
 11:48 - feed made and ready to go
 11:49 feed being administered
 11:50 -feeding pump running at 44ml/hr (18 hours of the day)
 1:18 - repositioned in the vibrator chair - another favorite
 1:54 - Jacob's learned to grind his teeth :(  if we put the soother in, it usually helps him to stop
 2:04 - Caleb to the rescue
 2:41 - time for therapy in the 'little room'
 2:53 - working with lights, not much success lately
 3:04 - not happy
 3:06 - time for more meds
 3:09 - asleep (due to the sedation drug) - within 3 minutes
 3:16 - after every batch of meds or at the end of a feed, we flush his tube with water
 3:20 - feeding bag cleaned
 3:39 - time to clean syringes
 3:44 - his med chart - the only way I can keep things straight
 3:47 - time for more meds
 3:51 - Caleb loves to help!  The amazing thing is, we didn't have to tell him how fast to administer the meds.  It shows us how much he watches!
 3:56 still asleep
 5:12 - one med and a water flush
 6:00 - feeding time (he'll be fed from now till 7:00am) only with small breaks every 4 hours to clean the bag and refill
 7:07 - awake from his nap
 7:47 - not happy again
 9:00 - more meds - so so many every day :(
 9:05 - working with music therapy with his feet - every time he hits the music toy, it plays a song
 9:07 - making his night feeds
 9:10 - folding his laundry
 9:15 - he's responding well with the toy
 9:27 - diaper changing time and play time!

 9:33 - peaceful again
 9:35 - mommy and son time - precious beyond words!!

 9:39 - chest physio time - another thing that Jacob loves, which we have much to be thankful for!!
 10:47 - Daddy flushing his tube and spending time relaxing with his little man
 10:56 - feed bag being cleaned with hot soapy water
 10:57 - feed bag being rinsed with hot water
 10:59 - another feed ready to go
 11:00 - Jacob falls asleep as the nurse walks in the door. 
11:32 - a report is given to the nurse and I leave a boy peacefully asleep for the night (or at least for the time being.)