Wednesday, November 26, 2014

Walking Home...

Thanks to everyone for all the prayers and kind words.  We brought Jake home yesterday.

He's so incredibly happy to be home.  He is still recieving 2 puffs every 4 hours and struggling greatly with that, and his oxygen numbers are again in the high 70s.  I'm unsure what this means, but will be calling cardiology this morning to talk to our wonderful cardiologist.

Here's a snapshot of our homecoming waltz down the hallway of the Janeway :)


Sunday, November 23, 2014

Our "Second Home"

We've been back in our "second home" since Friday morning - the Janeway.  Since Jake's discharge after having RSV his oxygen saturations have been consistently still lower than normal, and that in itself had us watching him closely.  Then on Friday morning he started coughing, runny nose, and feeling rattly in his chest so I called cardiology and they suggested he come to Emerge.  After spending the afternoon in Emerge Jake was admitted because they expected him to become progressively worse over the course of the day/night.  And he did. We avoided oxygen assistance until Saturday afternoon - but then his sats were low and he was breathing fast so we decided to put on the low flow oxygen prongs.  Jake has managed to avoid an IV this time around (knock on wood!) so that's been a little break for him.  Now it's Sunday morning and we're still here.  I'm expecting it will be Monday or Tuesday before we get to take him home.  It's all up to Jake - whenever he recovers enough to not need the oxygen for a consistent period of time then we'll be discharged.

The unfortunate news from this illness is that Jake has developed asthma as a result of his bout with RSV.  That's the reason why his oxygen levels and breathing patterns have not returned to his norm of high 80s/low 90s.  So, we add to his daily routine 2 puffers.  One for daily use, and one for when he is really struggling.  In my reading on the topic I came across a study that showed that in children under the age of 2 who have RSV and need oxygen assistance during that virus, 50% will develop asthma as a result.  This is particularly true for children who have chronic illness of the lung or heart.

So far the puffer has been a torture method for Jake.  He has to be physically restrained and holds his breath for as long as he can when the mask has been placed on his face.  It's awful.  I'm really hoping he will adjust to it, and soon.  Right now it would be impossible for one person to administer the ventolin by themselves, because of how hard he fights.

Here's a snapshot of Jake just after waking this morning, he had a little to drink and a few nibbles of breakfast.



Yesterday I was able to step out of the hospital for a couple of hours with Georgia to celebrate the Little Ladies Night Out at the Temple with her.  She was princess Georgia and treated as royalty.  It did my heart so good, and my belly too - real food!  It was a blessing.  I love being able to focus on Georgia, especially at times like these when Jake can easily monopolize all of our attention.




I was thinking last night of how well we have adjusted to our life with Jake.  These hospital visits don't get under our skin the way they used to.  I've become very comfortable with the equipment and with my knowledge of Jake that I often direct the nurses or doctors in what he may need.  And even stranger, the nurses and doctors will listen to me!  If Jake gets tangled up in the oxygen tubes or the saturation monitor wires I'll unhook them, untangle him and then reconnect.  No need to bother the nurses with that! If his IV line is hurting his vein, or it's about to collapse I'm the one who sees it and brings it to his nurse's attention. Flash back to Jake's first months at SickKids though - I wouldn't touch anything without asking a nurse first, and would question myself if they asked me what I thought Jake needed.  It's been a full 360 spin of understanding and knowledge for me and Jon in this daunting medical world.  But we know our son.  We may not have all the technical knowledge, but we know Jake.  That's what makes the difference.  I'm thanking God for this development.  It was a hard road achieving it, but we have arrived.  This is our life, and even in this moment of sitting with my son on a hospital bed while he watches his third movie of the day while coughing and breathing quickly - it's good.  I wouldn't trade it for anything.  I'm thankful and blessed in the midst of it all.  The song that always plays through my mind during Jake's hospitalizations is Praise You in This Storm.  I have shared it several times before on this blog, but one more time won't hurt.

Though my heart is torn.  I will praise God in this storm.



Wednesday, November 12, 2014

Another delay...

Last week Jake was hospitalized at the Janeway for 5 days, we had brought him in because he was coughing, vomiting when he coughed, and his Oxygen saturations had dipped to low 70s.  We spent 4 days in PICU and one on 4Med with Jake. The nose swab eventually proved that Jake had RSV (Respiratory Syncytial Virus), which we had been told was one of the worst things for heart baby to get.  Given that Jake is no longer a "baby" he was able to fight it off with the help of oxygen.  Jake recieved Synagis shots to help prevent RSV last winter from December to April, and these should start up again next month to help prevent a occurrence.  I'm so very thankful for my Mom and Dad for their help once again.  Mom stayed each night with Georgia at home, and while Jon was working in the daytime Mom and Dad came so I could go home to shower and eat real food.  Here are some pictures from that "fun" week :)


The night Jake was admitted...he needed 100% oxygen.  He was so sick.


A few days later...







All discharged! Walking out on his own steam...

 
Since we've been home Jake has been much happier.  His oxygen saturations are still low for him, but as long as he has no extra work breathing cardiology says that is ok.  Besides being a little slower and sleepier than usual, Jake has a lingering cough that makes him quite uncomfortable at times.  We had been waiting to hear from SickKids whether this admission and RSV diagnosis would change the date of Jake's G Tube surgery, which has been scheduled for December 3.  Today we finally heard back - unfortunately, it does indeed delay the surgery for Jake.  We are now rebooked for January 21, and will need to keep Jake healthy until then.  Easier said than done, my dear!

On Saturday Jake  vomited two of his feeds, along with his NG late at night.  We didn't replace the NG or the feeds that night because Jake was coughing so hard.  The following morning this happened...



A new record of 95ml! Not all at once, but in small portions - first 55, then 22, then 15, to make up the grand total of 95 by the end of the day.  A new all time high for Mr. Jake, it only took him 19 months to get there.  I'm so proud of this accomplishment but at the same time I feel like it's such a Catch 22.  I know Jake can drink his fluids.  I know this happens only if he is thirsty.  In order to learn to drink more he needs to feel thirst.  BUT. With his narrowed left pulmonary artery dehydration runs the risk of forming a blood clot which can have catastrophic effects on him.  So, we can't let him actually be thirsty, but if we could I really and truly think he would drink.  It's such a frustrating thing for me to think about.  Jake can do it.  I know he can.  But we can't create the ideal conditions that would allow him to want to drink.  Heads they win, tails you lose.  Oh dear.

This weekend coming up the Heart and Stroke Foundation and the MUN school of Nursing are putting on a conference called Living With Heart Disease: The Newfoundland Story.  I'm really excited, as there has never before been a conference with a focus on congenital heart disease (as opposed to acquired heart disease) and I have been part of the planning meetings since the first stage.  I've been invited to sit on the panel at the end of the day, as a Mother with a child with a CHD.  I'm super nervous about that, but I guess they knew what they were doing when they asked me? The first presenter that day is Jake's own cardiologist, speaking on Congenital Heart Disease across the lifespan - I fully expect that to be a fascinating half an hour.  The next presenter is baby Sara's own Mom, Danielle.  Remember miracle baby Sara? Yeah, her Mom! It's going to be a good day.

Our whole family, except Jon who hasn't been feeling well, has now gotten the flu shot.  Georgia fought hers this year, which really surprised me as she has never done that before.  But we made it happen.  I came across this article: http://www.skepticalraptor.com/skepticalraptorblog.php/scary-flu-vaccine-ingredients/  which lays out the most logical argument I have come across yet for why the flu shot is not dangerous as anti-vaccination theorists like to claim.  It's a worthwhile read if you are having any doubts about the flu shot for yourself or your family.

I missed posting about Halloween so I'll share these awesome pics before signing off...Last year for Halloween Jake was a sickkids surgeon...this year that costume still fit!

Here at 6 months old



Here at 18 months old



But of course he also had a new costume...Here are my spooky skeleton girl and crabby boy :)



Sunday, November 9, 2014

Chosen.

A couple of Sunday's ago my Mom asked me to be part of her message, to share my story and thoughts around the theme Chosen.  The following is my portion - I shared it with St. John's West Corps and St. John's Temple Corps.  It's from the bottom of my heart, and more than few tears were shed while writing it.  I firmly believe every word though, and stand by it!

Here it is.  From my heart to yours.  

Two of the meanings of the word “Chosen” according to Webster's Dictionary are “not by choice” and “handpicked”.  There is one path that life has led me down that would not have initially been my choice, if I had had any input in the decision.  I can see myself standing at the foot of the path of having a child with a life threatening illness, peering into the unknown world of surgery, hospitals and palliative care, and saying to those around me – I am not strong enough for this path...this path belongs to someone else.  Having walked this particular path for 18 months of my son's life, I believe that this path was “handpicked” for me by God himself.

Let me tell you a little of my story.  My name is Lisa, and for as long as I can remember I have loved God and trusted my life to His care.  My life has been a good one, filled with many blessings, but in some ways my faith was the naïve faith that believed that God would never allow anything bad to happen in my life.  When I became a mother my journey as a Christian took on a new meaning.  I have been blessed with two beautiful, perfect children.  Georgia is five years old and just started Kindergarten – she is my strong, imaginative, loving and beautiful girl.  Jacob is just 18 months old, and it was his path that I was referring to in my “chosen” analogy.  You see, Jacob is a miracle. He was formed in my womb with only half of a normal heart.   The doctor at the Janeway who diagnosed his heart defect held my hands and cried with me and told me that my baby boy would probably not survive to be born.  By the grace of God he did survive...and he has endured more suffering in his short life than most people endure in their whole lifetime.  3 open heart surgeries, 2 pacemakers and many invasive procedures later Jacob is thriving – he is now walking, and his verbal ability is above average for his age – Jacob has surprised his doctors and surgeons repeatedly in his short life.  For Jacob there is no cure, no magical “fix” that will take away his heart defect – he will have a lifetime of interventions and medical treatment.  But this diagnosis does not define Jacob.  Many of you have met my son, or seen his pictures – Jacob is going through his life with a big smile on his face.  Jacob is a child of God.  He is God's masterpiece, even though in the eyes of the world he is a broken masterpiece.

Walking this path with my baby, it has taken me a long time to reach my current point of understanding, faith and hope with Jacob and his diagnosis.  I have struggled with depression, and anxiety, I have doubted God and raged against Him for not giving my innocent child a whole heart.  There were times when I felt that I could not go on, it was too hard to watch and be helpless while my child went through such immense suffering and instability.  Day to day I have struggled with living in the moment, and wasted time worrying over the future.  In these months of my life, I was acting in much the same way I used to when as a child I sat in the front pew and refused to listen to my Father's sermon on Sunday morning.  Some of you may know that I wear 2 hearing aids, and this came in handy when I didn't want to listen – I would actually reach up and switch them both off so that I wouldn't be bothered by the message my Dad was preaching from the pulpit.  Later in the service my Mom would have to tell me to turn them back on...in much the same way, I refused to listen to the voice of God during these darkest months of my life.  When I reached up and turned my hearing aids back on I was finally able to hear what God was trying to say to me.  As always, it is a message of love.

One of the phrases that has frequently been said to me is that “God will not give you more than you can bear”.  Well, I stand here this morning to say that I could not disagree more.  God will give us more than we can bear – life will give us too much grief… but the promise of God is found in the middle of all the pain.

The promise I have found and proven true over and over again is this: we cannot handle this life on our own strength.  You and I, in our individual struggles and life paths, cannot make it to the end on our own.  In moments when life is too much to bear – it's ok to feel like you can't handle it, like you are going to give up, like you are failing.  It's at this lowest point that we find God is suffering with us.  God is faithful.  He is always in the middle of the chaos of our lives and He will meet us right there in all of the mess and in all of the pain if we are willing to let him in.   And when God meets us there, we need to recognize that there is a constant need to depend on Him.  Depending and trusting in God is not  only for those times when our lives are not going as planned – it is an everyday conscious decision to start anew and love and trust that God is in control.   Trust, and depend on the Almighty God – cast all your fears, worries, suffering and pain on Him.  God cares for me, and for you.  God chose me to be Jacob’s Mom, and handpicked me for this path.  Not because I am a strong person, but because I can conquer my challenges through the strength that fully depending on God provides.