Wednesday, 30 September 2015

Home Sweet Home!

Yes, it is finally true!  After 7 1/2 months at Sick Kid's, Jadon is finally home.  It has been an incredible journey- one we would not wish on anyone!  He is coming home weaker than anticipated, and with a fair amount of medical equipment.  We have oxygen, O2 saturation montitor, g-tube, PICC line for anti-fungal meds, suction.  He is on 9 meds, most of which he takes 3 or 4 times daily.  But he is home.  We are all under the same roof once again!
We did not tell the kids Jadon was coming home as we did not want to disappoint them if something came up.  They each found out as they walked into the door.  It was great to see their enthusiasm!  Here they are in order.

They spent the evening trying to get Jadon to laugh and interact with them.  Jadon was thrilled to be among his siblings again.  At supper time, an excited Li Lin said, "On a scale of 1 to 10, this is 100!

Sunday, 20 September 2015

A one-way ticket out of the CCU hopefully!

It has been 18 days since Jadon's most recent surgery.  Since his cardiac arrest he has progressively been improving.  Jadon has once again battled through major setbacks.  He spent 'only' two weeks in the critical care unit this time.  His kidneys and liver are working much better.  He has been able to maintain a much better fluid balance.  His feeding tube is working well and he is now able to get full nutrition through this.  He is sitting up in bed for well over an hour.  He has started taking some food orally once again.  We are able to go on short walks around the hospital again.
Jadon is still on a little bit of oxygen and is still requiring to be suctioned periodically.  The medical team will be starting him on some more heart medication that will help to deal with those issues.  The finally seems to be a light at the end of the tunnel.  We are hoping that over the next little while Jadon will continue to gain strength and that soon we will once again be reunited as a family.  That day can not come fast enough!
Brave Jadon showing many of his battle scars, his newly inserted G-tube, his pic-line and oxygen.  We all think his chest incision is now 'looking great' compared to what it has been!

Monday, 7 September 2015

Not exactly the way we envisioned it!

Jadon turned 3 today.  This was the first birthday of his that he had with mom and dad around.  It was the first birthday he had with a family and friends that are behind him and supporting him.  Unfortunately, it was likely not the first birthday he spent with multiple health caregivers surrounding him.
When we first adopted Jadon, we thought his heart issues had already been fixed with the Tetrology of Fallot surgery.  As it turns out, he had only received a temporary fix, buying him some time until he could get the complete surgery.  When we went into the hospital on Feb 11 for his complete Tet repair, we had absolutely no expectations that his birthday would be spent in the hospital.  Even during the summer, we and the kids were so looking forward to this day.  We were hoping that after Jadon's G-tube insertion and fundoplication on Wednesday, that he would be recovering well, taking his feeds, and be upstairs in his own room on the cardiac floor.  We were hoping that his birthday would be only days before he would be able to come home.

Unfortunately, due to the cardiac arrest on Wednesday evening, and the liver and kidney complications, Jadon is still intubated in the Cardiac Critical Care Unit.  This is where he celebrated his third birthday.  The nurses from both floors, the CCCU and the Cardiac floor were absolutely wonderful.  They helped Rykauna decorate Jadon's crib area, made and signed cards, brought gifts and a cake, and sang Happy Birthday to Jadon.  We could once again see the love that so much of the staff have for Jadon.

Jadon's liver enzyme numbers are looking much better.  His kidneys are working better and he is starting to get rid of the excess fluid (which is currently his biggest problem), he is on minimal ventilator settings and he is tolerating significant feeds through his newly inserted G-tube.  Once again, our little warrior is fighting through yet another setback!  We are so proud of him and we love him so much.

Happy Birthday Jadon!

Thursday, 3 September 2015

How much can one little guy take?

Jadon had his g-tube insertion and fundoplication surgery yesterday.  The surgery itself was a success and the doctors even fixed a small hiatial hernia.  The surgery took almost twice as long as planned because as the world renowned and award winning general surgeon said "He was really tough" to work on.

The postoperative phase however was not nearly as good.  He went back to the cardiac floor and starting having some respiratory issues.  Eventually he was overwhelmed and he had a cardiac arrest.  The nurse and doctor were in the room and CPR was started immediately and the episode was relatively short... about two minutes, though to us it felt like hours!  He is now in the CCU once again, resting on the ventilator with two blood pressure meds to support him.  His kidneys are not functioning well, but he seems to be neurologically intact.  They plan to leave him on the ventilator for a few days to allow his body to rest and his vocal cord swelling to go down.  Yet another issue!  We are losing count, yet this absolutely brave warrior pushes on!

Tuesday, 1 September 2015

Twas the night before surgery... yet again!

Well here we are yet again.  Another nervous night before another surgery.   Jadon is scheduled to be the first case for General Surgery tomorrow.   The plan is to do a G-tube insertion and a fundoplication.  The hope is that after this, and his recovery time, he will be able to come home.  We are once again looking forward to the surgery bring completed but are also apprehensive of post-operative complications given Jadon's track record.  The plan is to do the fundoplication laproscopicly which is less invasive and should mean a quicker recovery time.

Jadon had progressed a lot over the last week.   He is more engaging, more active and even took several steps on his own.  Once again, he hits new milestones just before surgery.   This makes it hard to think of him going under the knife again just as he is getting better, but we are thankful that this shows his body is stronger and thus more ready to withstand the ordeals of another surgery.

We continue to appreciate all of your prayers for Jadon, for the two of us here at the hospital with him, and his siblings and family waiting nervously at home.
Jadon grooving at Buskerfest last weekend