Thursday, 29 May 2014

Jacob's Room :)

 June 12, 2014

 As we plan on this fundraiser, it is a constant reminder of how Jacob has exceeded everyone's expectation.  What a celebration :)  Truthfully God's ways are above our ways!  It brings back memories of Jacob in the isolette in the PCCU, when he was only several days old.  Back then, I never thought we'd see the day that he would 'graduate' to a crib.  Now, 3+years later we are faced with the reality of Jacob graduating from his crib and requiring more room than we currently have in our house.  

Lisa Pearlman is a world renowned speaker who has graciously offered to speak at our fundraiser.  She is a captivating, knowlegable and sincere woman who has dealt with Paediatric Palliative Care for years.  She's been involved in Jacob's care since he was 10 days old, and has been an enormous asset ever since!!  I'm more than slightly interested in what she is going to say :)  

To say the least, the nurses can't wait for the addition to begin (and finish) so they can have their own space with Jacob.  They are looking forward to being able to deal with Jacob in ways without the worry of waking the whole household up.  Yeah, for more sleep and more relaxed care from the nurses!! 

Tuesday, 13 May 2014

Month's Summary

Over the past month, we've been blessed beyond measure with a relatively stable boy.  I don't think we could get him to a more stable point :)  Here are several of our recent joys/concerns:

- He's been enjoying quite a bit of time outside, which he LOVES!!  He's usually grumpy for a bit when we take him in, but that's ok.  It shows us that his brain properly processes his likes/dislikes, which is a huge stepping stone! :)

- He's beginning to roll onto his right side.  It's so nice that he can become more comfortable on his own!  What a milestone :)

- He's been sleeping at night surprisingly well!  He's been waking up to the minute, that the nurse is done her shift.  It seems when he gets a good night’s sleep, his days are so much more manageable!

- He's becoming much more vocal :)  In a pleasant way.  He's making more different noises in response to different things.  It's truly beautiful to witness.  I love our new found conversations :)

- He no longer needs chest physio.  There is simply no explanation for this, but we'll gladly accept this new stage.  His lungs have been perfectly clear for several weeks. Incredible!!

- A new GI med has been added while another one has been discontinued.  And the world of changing meds continues.  It seems like the med is having the desired effect, so that's a bonus!

- Unfortunately we witnessed another apnea spell on Sunday :(  On a positive note, it was the first one we saw in 6 weeks.  That's the longest we've gone once they reared their ugly head in December.

- By far the least fortunate for us was that Ashley, a night nurse, changed positions in the nursing world for a management position.  We wish her the best, but it's more than difficult to see a nurse leave whose heart was so caring for Jacob.  She was a gem and will always have a very soft spot in our hearts!  The kids had a really hard time with her leaving too, as she was such a fun person to wake up to.  I'm convinced she'll be glad that she's gone though because we've been battling bats in our house :(  She witnessed a bat in our house last summer, and let's just say, she didn't handle it very calmly! 
Ashley - is dearly missed already!


Thursday, 8 May 2014

3 Years

Virginia is a regular 'visitor' at our house.  We are more than fortunate to have had her care and love watching over Jacob for the past three years.   Yesterday marked the three year mark that she walked through our doors to meet a little Jacob.  She said yesterday how she questioned would we see Christmas?  Well we did see Christmas 2011, plus 2 more :)  :)

Once a week Virginia assesses Jacob's lungs, answers our questions and concerns, deals with medication issues and is often our sounding board for medical questions/issues.  She has been a huge asset for Jacob and the rest of us.

Jacob has learned who Virginia is and we are sure he realizes she is going to get her stethoscope out because he usually starts snorting and breathing really loud.  The noise can be so loud through the stethoscope that I'm sure she has left more than once with ringing ears.  She's gotten so used to his noises that at times she doesn't even try to get an assessment because she knows all she's going to hear is upper airway noises which are deafening.  I'm so thankful that Virginia sees humour through it all. 

One time several months ago Virginia came while one of our night nurses was here.  His lungs had been great for the nurse Andrea for several hours until...Virginia came in.  Instantly he started snorting, snoring and making all sorts of noises.  After attempting to assess a noisy situation, she finally exclaimed, "I'm not Virginia, but Andrea.'  Her reasoning didn't work, but needless to say we were all in stitches.  That's Virginia. She can make a tough situation into a much lighter one!
There are nurses, but there are also nurses who go above and beyond their calling and Virginia is one of them!! :)  What a gem!!  Thanks Virginia!! 
Yep, he's complaining that the stethoscope came out!

He was more than noisy this particular day and Virginia can still smile :)