start praying now

i just talked to dr r (asher's toronto cardiologist). she has finally gotten the results of the MRI. and after reviewing them, and discussing it with dr c (asher's heart surgeon), they have figured out what the problem is. and it's not anything that had been discussed before.

children with HLHS generally have a hole in their hearts, in the wall between the 2 upper, collecting chambers. this hole allows the blue and red blood to mix before being pumped out to the body. this hole is called an ASD (atrial septal defect). asher's ASD was really 2 very small holes, which were not sufficient for blood mixture, and caused myriad other problems, as well. when he was 6 weeks old, the ASD began to close. so they put a stent in it to keep it open and allow blood mixture. the plan was to remove the stent when he had his Glenn last June. however, when dr c was in there he saw for the first time that one end of the stent had grown into and embedded itself in asher's atrial wall (the wall of his heart, not the septum between the chambers; the stent has grown into the heart muscle). he realized at that time that it would be too "problematic" to remove the stent.

fast forward to the last few months. asher's oxygen saturations in his blood (sats) have been dropping steadily, and he is now sitting around 69-75%. this is not good. in fact, it's terrible. at this point post-Glenn, a single ventricle child's sats should be at least in the high 80s. prior to discharge from CHWO last month, cardiology discovered on an echo that one of the pulmonary veins shows some narrowing. toronto agreed, and they did the MRI.

ok, so you're up to speed. now here's what TO doc had to say:

asher's ASD stent appears to be putting pressure on the pulmonary vein, preventing red blood (the blood with oxygen) from coming from the lungs to the heart. so, the stent must come out. and dr c (who is really the boss when it comes to this stuff) feels that it must be done sooner rather than later. in fact, they will be presenting asher on monday to set a surgery date and to discuss the plan with the whole cardiac team. they will present the stent removal, but also discuss the possibility of doing the Fontan as well. (the fontan is not part of the plan right now, but they are putting it out there for discussion.) either way, with or without the fontan, this will be open heart surgery soon.

please start praying now. as it is, asher is very pale and tired. he is, despite appearances, in weak and deteriorating health. and now, the only solution is very risky open heart surgery. they need to dig a piece of metal mesh out of my baby's heart.

please pray for us. this is very discouraging, since we had been told "we're likely going to stent the PA's and coil off some collaterals." now it's "he needs open heart surgery now-ish." quite a roller coaster. pray for asher, that he will continue to fight. physically he is weak, but he has the strongest spirit i have ever seen. please pray that he can continue to fight through this. please pray for blithe and bram. this is especially scary for them, since they don't fully understand what's going on, just that asher's not doing well and he could die. please pray for dr c, as he plans this surgery, one that he didn't want to do in the first place, one that may not end well, one that is extremely difficult and stressful for him.

in the meantime, as scary and upsetting as this is, and as heartbreaking as it is to receive such bad news, pray for us. pray that we will cling to One who made asher the way he is, the One who has promised him strength to match his days. pray that we will continue to throw ourselves on Him for comfort and peace, and to trust only in Him.

you know, it's interesting, a little bit of GOD fell into my inbox this afternoon, in the form of an email from my friend joanna (another heart mom). i am convinced that God planned for me to get that email this afternoon, before writing this post, to encourage me and lift me up. so here is my prayer, for us, and for you as you read this:

It is better to trust in GOD than to put confidence in man. Psalm 118:8

what a wonderful, timely and encouraging reminder, especially at a time like this. thanks, joanna.
so, all your prayers and good vibes and whatever you call what you do are hugely appreciated right now. we don't know what the future holds, but GOD does, and He will make sure that everything happens according to HIS perfect plan. we're trusting Him, and i'll be praying that you do, too. h