Home Sweet Home!

So, as of yesterday afternoon we are home!  Not in our most optimistic dreams did we expect this.  We figured if we made it home within two weeks we would be doing well.  It's so good to all be together as family again.

Jadon is still quite week, somewhat lethargic and has very little stamina.  He is still a lot of work as we manage his pain, care for and protect his chest wound, and make sure he maintains a good fluid balance.  It will lilelybtake a few weeks yet until we get the full Energizer Jadon.  However, we are making progress.  He is having moments where his mischievous twinkle returns to his eyes.  They are becoming more frequent and lasting longer.

czx\\

Moving Day

Today was quite eventful.  Jadon has progressed to the point where around noon we left the CCCU (Cardiac Critical Care Unit) and moved up to the step-down unit on the cardiac floor.  He is still in a shared room where there is always one nurse present, but it is definitely a step in the right direction.  Speaking of steps, we got Jadon to stand up for a few minutes on his bed today.  He needed to be supported but we were excited. It's important for him to move around and get mobilized.

Tomorrow Jadon should be losing his chest tubes which should make it easier for him to move around.   Apparently they can be quite painful.  Then they have to sort out his blood thinning medication.   Long term he should be fine on aspirin as he has been for the last 2 years but for the next 2 months they want him on something stronger.

I was able to drive home and bring the 4 siblings down to see Jadon this afternoon.   He has been quite grumpy as he's still not feeling well.   The look in the picture above is the best we'd gotten all day.   Once his siblings got there, they worked really hard to entertain him and were finally rewarded with a slight chuckle and this bit of a  smile.

God is Good!

Jadon's surgery was yesterday.  We showed up at 6:00 am at Sick Kids to get him ready.  After a sanitizing wipe-down, a change of clothes and a medicine, we were down in the pre-op room.  We were told that the OR had been booked until 3:00pm but that is was likely the surgery would take several hours longer than that.  Both the cardiac surgeon and anesthetist indicated to us that this was to be a 'difficult' surgery.  There were several contingency plans in place for a variety of not so positive to outright negative outcomes.

Around 8:00 am we kissed Jadon goodbye and committed him to God in prayer.  We had been very encourage and buoyed knowing that many people, literally from around the world, were praying for our little guy, his medical team and our family during this time.   We spent the time walking around the hospital, grabbing lunch, each of us getting a nap.  During our walk around the hospital we were reminded once again how many lives Jadon has touched.  Ward clerks, fellows, nurses, porters, PSWs, cleaners, managers etc... stopped us in the halls to ask us how Jadon's surgery was going.

Shortly before 2:00pm, we were sitting in the surgical waiting room when Jadon's cardiac surgeon showed up.  We assumed he was there to give us a update; to indicate that they were moving on to one or more of the contingency plans and that they would be several more hours.  Nope!  The surgery was done!  Not on ECMO?  No!  Chest still open? No!  Any complications? No!  We were very pleasantly surprised.  The surgeon (and subsequently the ICU doctors, head nurses, our complex care doctor and several others) have all admitted the same!

Jadon was actually extubated yesterday evening.  He is off all of his post-operative medications (other than a pain medication) and is being switched back to his home medications.  He is interacting with us (however in a very grumpy way - who can blame him?) and is drinking some water and juice orally.  We have started his feeds.  Overall, he is doing very well.  The ICU attending this morning told us, "We are trying to show you what the fast lane through the ICU at Sick Kids is.  It's  road you haven't been on before!"  It is nice to see many familiar faces among the staff.

We truly appreciate all of the prayers that have gone up on Jadon's behalf (as well as for all of our family).  I will end with a verse that Sara has been holding on to for a long time when it comes to Jadon.

Ephesians 3:20, 21
Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, 21 to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen.

Another 'Night Before'

It is very hard to describe the feeling one gets the night before their child goes in for open heart surgery.   There are conflicting emotions... hope, fear, joy, terror, relief... that are blended together.

For Jadon's first open heart surgery in February 2015, we felt mostly relief.  Jadon had been sickly since his adoption in October 2014.  His several months in Canada since that time had included several stays at Sick Kids already.  His oxygen needs were increasing and we were just trying to keep him healthy enough for a two week window so he could go in for surgery.   Yes, we knew there were risks associated with open heart surgery but those were theoretical risks that seemed very unlikely.  We felt relieved he got in for surgery and very hopeful that his heart would be fixed.  Of course 12 hours later when Jadon came out of the OR on ECMO after a surgery with many 'complications', many other emotions surfaced very quickly.

This time round, we are decidedly more cautious.  It figures 364 days in a hospital and 7 surgeries within the one year will change our perspective.   We have seen many outcomes with Jadon that were not the most desired.  He has been through so much! Yet he is an incredibly positive and happy little boy.  We are aprehensive about the surgery,  yet knowing he needs this valve replaced.  We are hopeful that in the end there will be some improvement in his heart function and/or quality of life.   We are aware of the potentially negative outcomes, but are relieved he has fought off his most recent cold and stayed healthy the last few weeks so he can go in for surgery.

Ultimately, we know and believe that God is in control even though we often don't understand his plan.  We have been so touched by the many prayers of so many throughout the last few years,  but more recently these last few days since we got our surgery date.  A few of Rykauna's friends have set up a prayer chain and so mamy people (quite a few we don't even know personally) have signed up so Jadon will be prayed for constantly throughout his surgery and his post-op recovery.  We are so thankful.

And so, another Night Before.  Mixed emotions  but ultimately... a sliver of peace knowing we and Jadon are in our Father's hands.

Another Surgery

It has been several years since our last post.  Jadon has grown and has been progressing well overall.  He is mischievous and so happy and full of life.  He loves to play with mom, dad, siblings, knock-knock (his name for Grandma). He often will be heard asking one of us "Will you play with me?"

Medically, we have had some ups and downs over the last few years.  As a result of Jadon's first open heart surgery in Feb 2015, he had damage to 2 of his heart valves among other things.  During the fall of 2017, there was increased back flow from the tricuspid valve.   In Feb 2018, the pulmonary valve (which had been implanted during the original surgery and was also leaking) was replaced with a cath procedure in hopes that it would allow the tricuspid valve to function better.   It helped for about 6 months during which Jadon had increased energy and stamina.  However during the fall his exercise tolerance started to decrease.  A regular follow up test on his liver showed that it was being damaged by the back pressure caused by the leaky tricuspid valve.   The medical team decided that it necessitates an open heart surgery to replace the tricuspid valve.  We got our tentative surgery date today.   Lord willing Jadon will have surgery on Tuesday February 5th.  The medical team is aware of the challenges and there is some level of concern as to how Jadon's heart will tolerate being on the bypass machine during the open heart surgery again.   Issues the first time led to a cardiac arrest and subsequent need for a cardiac bypass surgery to help repair some of the damage.

We would appreciate your prayers for Jadon and the whole family at this time.