As some of you may know, Josiah was discharged from SickKids yesterday, and we made it home at about 10:00 PM last night. Hard to believe that he is actually here in Kitchener! Isaac is a great big brother, and wants to see "baby" and pat his head.
Many of you have asked via email whether this means he doesn't need surgery now. At the present time, Josiah is "balanced" medically, meaning that his oxygen saturation levels are OK for someone with his condition. As well, the areas in his veins and arteries where the cardiac team is most concerned about possible narrowing/blockage are not presenting a problem. Therefore, this means that at this point in time, if this balancing act continues, Josiah could potentially skip some of the first-stage surgical interventions we were told might have to happen within the first days/weeks of life. This buys him time to get bigger and stronger, to face future surgeries he requires.
At some later date (typically between 6-12 months) Josiah will undergo a surgery to reroute his superior vena cava (he has two, instead of one) so that the blood they carry from the top part of his body goes to the lungs directly, and not to the heart. Additionally, at around age 2 he would receive another surgery to reroute some other arteries and veins so that the oxygenated and deoxygenated blood is kept separate, as in a normal person. Each of these surgeries obviously carries great risk, and requires extended recovery.
So, it's a bit of a waiting game right now. We are certainly praying that Josiah stays "balanced" and that he can skip the first-stage surgical interventions. However, we are also constantly monitoring his appearance, feeding, sleeping, etc. for signs of possible congestive heart failure which would mean a trip to the hospital and possible intervention at SickKids. As well, we'll have weekly appointments with either SickKids, McMaster or our local paediatrician to monitor his status. We couldn't do all this without the tremendous help of Elizabeth's parents, who are living with us and looking after Isaac, and Graham's parents who fill in and come whenever needed. Isaac certainly loves his Grandmas and Grandpas.
Some prayer requests at this point:
- Establishment of good breastfeeding for Josiah so that he gets all the nutrients he needs to grow and thrive. Because of his heart condition he gets tired more easily during feeds, so Elizabeth has to assist him when he's feeding.
- That Isaac would adjust to life as a big brother, and somehow understand that Mommy and Daddy need to spend extra time with his little brother.
- That we would have wisdom to see any signs of congestive heart failure in Josiah, and that we would have peace now and in the future.
- That God would give all the medical professionals providing his care supernatural wisdom and skill.
Have a great night.
Blessings,
Graham and Elizabeth
thefaulkners.ca
This blog is a wonderful idea Graham and Elizabeth! Thank you so much for the update...we are and will continue to pray for you and your family! Tracy & Peter Gallagher
ReplyDeleteSo amazing what can be done these days, for little ones like Josiah. The Lord be with you all in so many special ways as you face each day - may you find much joy in His presence, and much peace, too.
ReplyDeleteI'm grateful for this blog, Graham and Elizabeth - so that we can pray you through, step by step!
Kathy B