Thursday, 21 May 2015

100 Days... and still waiting for answers!

One Hundred Days.  This is how long it's been since Sara and I woke up very early in the morning on Wednesday, February 11 and drove down to Sick Kid's with mixed feelings and emotions. 

On one hand, Jadon was not doing well.  His SATs were usually in the 60s, often dipping lower.  He was often short of breath.  He had had one cold after another which had necessitated delaying his surgery.  He needed to get his Tetrology of Fallot repair.  We were relieved when he finally went into the operating theater.  On the other hand, we had been told about risk factors.  We were told that while the surgeons at Sick Kids perform many TOF repairs yearly, there was always some chance of complications.  It was hard to think of this wonderful brave little boy going under the knife.

Here we are, 100 days later.  Jadon's surgery had many complications.  Jadon spent time on the ECMO.  He has been intubated 7 times (three surgeries and 4 imaging procedures).  He has had countless needles, blood work, medications, x-rays, echo cardiograms, ultrasounds, pokes and prods.  He has been presented on surgical rounds at least 4 times.
Jadon with some of his 6 (and counting) Bravery Bead necklaces
His SATs are much better.  He is usually in the low 90s.  However, as we learned a couple weeks ago... while the surgery fixed the piping to a large extent, the pump has been damaged.  How badly is the pump (heart) damaged?  This we still do not know.  Jadon has had 4 imaging procedures over the last week, a cath lab, heart MRI, MIBI nuclear med scan and a PET scan.  The information gathered will be processed and Jadon will once again be presented in surgical rounds on Monday morning.  We should have a plan by Monday afternoon.  If the medical team feels that Jadon's heart dysfunction is due mostly to 'hibernating' cells, then a bypass surgery will be scheduled to return blood flow to the area.  This will improve the effectiveness of the heart's pumping, and Jadon's long-term outcome and quality of life.  On the other hand, if the medical team feels that the dysfunction is representative of dead cells, then his heart function will be managed with medicine, and the fundoplication surgery (for his reflux) will be rescheduled and we will move ahead with that.
Jadon giving eye drops to his stuffed dog!

Until Monday, once again, we wait... for answers, for a plan.  We are hoping and praying that the heart dysfunction is due to hibernating cells... and that yet another surgery can restore function.  This has been a very long roller-coaster ride with many emotional ups and downs.  It has been tough on Sara and I.  It has been tough on our other four children.  It has been tough on Jadon.  It has been tough on our support network - family, friends, church members.  Yet, we are able to smile and to rejoice in the Lord.  Habakkuk 3:18, 19
Family Selfie!
Still smiling!  Playing with Sara's glasses!

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