Sunday, January 1, 2017

God Bless Heart Warrior Jacob

This post has been hard to write, mainly because I find our life is such a paradox of ups and downs --- I don't want to write out the downs and have people pity us or view us as depressing or needy.  At the same time, I also want to share our story with those who care about Jake and want to pray for him and help us in any way possible.  So I've been starting and stopping typing with different takes and thoughts several times over the last week but am determined that now on New Years Day 2017 I will finally finish it.  You can expect a lot of new postings over the next 6-8 weeks as well, as we travel through Jake's Fontan surgery path starting in five days when we board the plane for Toronto and SickKids and hopefully Ronald McDonald  House as well.  Five days...  But before I launch into all I have to say, check out the amazing Christmas we have had at home! Jake got his much requested green bicycle!!!










Here's where we are after Jake's last echo appointment.  His heart is doing okay, but he's had a super persistent cough for months, and this is apparently due to Jake's heart being more enlarged than usual --- he's always had some enlargement but now it appears to be affecting his lung function and is just one more reason that he needs this Fontan  to take some pressure off of his heart and lungs.  Jake is booked for Surgery on January 16, but has three days of appointments leading up to the surgery - Pre-Catheterization, Catheterization, and then Pre-Op Day.  

So, the Fontan...what is that??? Here's a simplified breakdown of what's happening in this third stage of Jake's repair The Fontan procedure is used in pediatric patients who possess only a single functional ventricle, in Jake's case the cause is an abnormality of the pumping ability of the heart (hypoplastic right heart syndrome). The single ventricle is doing nearly twice the expected amount of work because it has to pump blood for the body and lungs. After Fontan completion, blood must flow through the lungs without being pumped by the heart. Therefore, children with high pulmonary vascular resistance may not tolerate a Fontan procedure. Often, cardiac catheterization is performed to check the resistance before proceeding with the surgery. Jake's last open heart surgery was the bi-directional Glenn, which involves redirecting oxygen-poor blood from the top of the body to the lungs. That is, the pulmonary arteries are disconnected from their existing blood supply (the shunt created during his Norwood procedure at 5 days old). The superior vena cava (SVC), which carries blood returning from the upper body, is disconnected from the heart and instead redirected into the pulmonary arteries. The inferior vena cava (IVC), which carries blood returning from the lower body, continues to connect to the heart.  The Fontan Completion then involves redirecting the blood from the IVC to the lungs. At this point, the oxygen-poor blood from upper and lower body flows through the lungs without being pumped (driven only by the pressure that builds up in the veins). This corrects the hypoxia and leaves the single ventricle responsible only for supplying blood to the body. (Source: https://en.wikipedia.org/wiki/Fontan_procedure)

Here's an image I found helpful, although Jake has HRHS, he also has transposition so what appears to be the left ventricle is actually the right.



Jon and I are terrified, to say the least, but we are not doing this alone.  We have a huge network of prayer warriors behind us, and the support of our family and friends.  Jake knows he is loved, and we've been spending a lot of time with Georgia in preparation for leaving - not wanting her to feel left out especially as we will be away for her birthday on January 10th.  We had a big party with all her friends last week, and I"m thankful that worked out for her before we go.  And yet, this morning I was cuddling Jake and Georgia walks up and asks me why we love Jake more than her.  Instant heartbreak.  Over the next five days I'm determined to do as much one on one time with my girl as I can - I don't want her feeling like she is less important in any way, shape or form.

I am so sad to be leaving my BlueBelle behind and that I'll miss a month or so of my baby niece Alice's life...It's not fair at all.  We've just come home from our Sunday norm - dinner and family time and Mom and Dad's house.  The last one for a few weeks, but I'm already looking forward to the next one.

Tomorrow we start to pack.  We don't need much with us as Ronald McDonald House has great laundry facilities, and we can buy a lot of Jake's tube and med supplies at the Speciality Food Shop in Sick Kids so we just need enough to get us through the first week or so.  Mom and Dad and Georgia will be joining us the weekend before the surgery - that will be a happy reunion for sure.  For more frequent updates be sure to join Jake's group on Facebook - Bless Jake's Heart, and I'll do the more detailed posting on here as needed.  

I was driving along a couple of days ago, thinking about Jake and all he has faced and has yet to face and the words of Jeremiah just flew into my head.  They've been repeating a lot since, so I put them on one of my favourite pictures of Jake that was taken just a month or so ago.  God bless Heart Warrior Jacob.


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