Well, we've said it time and time again --- just when you think you know what to expect and start making plans, you are thrown a curveball in this world of CHD's.
However, this was a good curveball. I'll take it happily.
Last I wrote, we were expecting Quinn to be scheduled for an intervention catheter where they would place a balloon stent in both of her branch pulmonary arteries to help with the narrowing in those areas. However, after consulting with the "man" (ie: our hero, Dr. Fraser, who we trust implicity), he decided that she could wait closer to a 6 to 12 month mark before undergoing the surgery. Basically, although the arteries have moderate to severe narrowing, her right heart IS functioning well and seems relatively unaffected. Thus, he decided that it would be best to put off the cath as long as possible - again to give her arteries more time to grow. (How many times have we heard that???)
But basically, this gift of time will give the catheter docs more options when placing the stents. Again, we haven't met with the cath docs, so I don't know all the ins and outs of the procedure and what exactly can or will be done. Or how long it lasts, etc. Communication has been somewhat stunted with our team up at TCH given the absence of our cardiologist --- and not knowing exactly who was taking Q's case. So they don't really know her, only her chart --- somewhat disconcerting to say the least. Thus the delayed results and plan of action through this process since her MRI's. That's why it was such a relief to have them consult with Dr. Fraser who DOES know my daughter very well. Thank you, Jesus, for this man and his brilliance.
So we will revisit TCH again in February for another echo and check the measurements of her narrowing. If it looks like it's getting to a dangerous level, we will move up the timeline. If they look ok and relatively unchanged - then we'll probably schedule cath sometime summer to early fall - hopefully before cold season again. Until then, we are to watch for signs that her right heart is starting to struggle. It wouldn't happen overnight where she would go into heart failure immediately (umm, thank the LORD), but it would be a slower progression of her losing energy, breathing with more difficulty, having to take longer breaks when playing, etc. The way this child moves all.day.long, it shouldn't be difficult to determine if that's occurring.
So after a very long and exhausting week, it was a pleasant surprise to get this news on Friday afternoon. Although we know this catheter procedure is inevitable, it's nice to know we can wait a bit longer, get through holidays and hopefully a 3rd birthday without any more intervention.
Team Q prayer warriors: can you continue to pray for a few things?
1. Wisdom and discernment on the part of the doctors and surgeons involved in Q's case. That the process of determining who's in charge of her care would be streamlined and communicated effectively and efficiently to us.
2. That this gift of time would allow Quinn's arteries to grow nice and big, allowing the best of the best technology to help open up those narrowings.
3. That there would be no surprises in February and that her case would remain unchanged and on the same course of treatment we have planned.
4. And most importantly, for Matt and I --- that we can continue to roll with the punches as they come to us --- if the above does not happen, allow us to not be dismayed but just be able to adjust our course, prepare, and support our family the best way we know how. And to lean on God always - for His plans and His timing are always perfect.
I am reminded of this scripture (actually read in church today):
"Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we boast in the hope of the glory of God. Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us." - Romans 5:1-5
I especially love the suffering to perseverance to character to hope. How these words ring true to me today and always. Hope always prevails --- and His Hope is available to us all because of His Mercy and Love. How HOPEFUL is that??? And through our suffering and trials, we continue to persevere, one step at a time, building our character and developing experiences, so that we come to know God on an even deeper and more personal level. That is when we are completely dependent on Him and know that we can do nothing without the rock of Jesus we stand upon. And I know that going through our trials of Q's heart continues to make us all stronger, build our faith in our Lord, and provides HOPE for her future, our future.
In His Hope and Mercy,