Hello All
Josiah had to wait a little longer for his heart cath today (scheduled for 11 AM, went in around 2 PM) but he is doing just fine. Thankfully he had lots of sedatives and anestetics to keep him sleepy all day.
So, the doctors found nothing wrong with Josiah's heart. It's good news and bad news I suppose, because while it's relieving to know that we can avoid heart surgery, we don't know what is causing Josiah to puff up and retain so much water. If this was something that merely affected his appearance we could deal with it; the problem is that his lungs are filling up with fluid which is obviously a bad bad thing.
It's ironic now looking backwards and realizing that we all (staff, doctors, and parents) thought Josiah was in heart failure for the last 2 months and now knowing that it wasn't heart failure at all. If you want to put a name to it, call it 'water retention failure' but that's really what's going on. 99 times out of a 100 when a patient gets prolonged puffiness and a harder working heart and higher resp rates it means heart failure - Josiah I guess is that 1.
What this requires now is a whole new set of questions and conversations next week as our doctors try to figure out what exactly is going on with our kid. Obviously Josiah's heart is being put under stress because he is retaining so much fluid, but the heart itself (pressures, structure, flow) is fine.
So, the emotional rollercoaster continues and Marie and I commented a few times today we really don't know what to feel. Relieved and scared, hopeful and frustrated, exhausted and elated. Praise God that Josiah has a good heart and that there are still options for our boy - except, we just don't know what they are yet ... !
Thanks for the prayers.
- Andrew, Marie & Josiah
4 comments:
Andrew & Marie,
That's great news about Josiah's heart being in top notch condition!! We can relate all too well to the emotional rollercoaster ride when it comes to dealing with the ups and downs and unknowns. Hopefully they will be able to determine soon what's going on. Sending bigs hugs to all three of you.
Love Erin, Tim & Emily :)
How frustrating! When will they figure it out? I can't even imagine the stress, worry and anger you must feel. Thankfully, you have great faith, for it must be what keeps you going. You are a very strong family.
WOW!!!! When I saw the pictures I was totally overcome with grief for you both. I pray that the LORD's Will be done. I know that it is VERY HARD for you both. Our prayers go out for you as you face many uncertain days ahead. I can never imagine how hard it is. This is "nothing" compared to what we went through with WES. I thought that we were stretched with him but now I see that we are truly blessed. MAY GOD give you the strength during this time. Marie thanks for the letter it really touched my heart. Just know I think of you daily and pray for you daily that God gives you wisdom for each day as you need to make decisions about your little guy.
Little explaination on my comment. There is a sentence is worded wrong. What I meant to say is that what we went through with Wes is nothing compared to what you are going through.
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