Go!

Macsen is blowing me away with his talking! After 2 years with barely a "Mama" and lots of "uh uh uh" we are now getting "Go!" and "Neigh" and he's attempting more sounds all the time. I think it is due to starting the fish oil regime recommended here  (this is the dosage we are using)and using the Kaufman techniques. Reading up on the same website signs of Apraxia and it is very probable Macsen has it. He has so many of the symptoms but is so young it is hard to officially diagnose him. So happy we are finally able to see some progress though.

I did talk to his cardiologist Tuesday and while it was great talking to her - she really is very kind and a wonderful person in addition to being a brilliant doctor - I feel so unsettled now, so anxious. I knew everything wasn't rosy during his testing in November - his pressures are barely passable at 14 (optimal is 10 or less) and the squeeze/ejection fraction are pretty bad. But I still felt like his surgery was pretty much guaranteed to happen this summer and we started gearing up for that - mentally preparing, arranging our life around "huge surgery in 6 months." Talking to Chitra this week has made me feel it is all up in the air. Some of it is due to his function and uncertainty that the enalipril will help that enough to safely add more pressure to his heart, something the 3rd surgery will do Some of it is from the discovery that Macsen has more pronounced lymph vessels in his neck. Lymph is something heart centers are just starting to  research in relation to the complications post-fontan kids are experiencing. If Macsen is already experiencing issues - he can not seem to clear the lymph efficiently and it gathers around his face making him seem chubby - then another surgery may send him in a downward spiral of complications. But they can't say whether it will or not - it's all a guess. So the new plan is we don't really have a plan - something that makes me feel like I want to vomit and my chest will explode. I hate it. I need a plan. The best she could give me is we do another cardiac MRI and cath this summer - if his numbers have improved and his function looks better then we would plan the Fontan in the following weeks. If they aren't improved I'm not really sure where we go from there? I am ok postponing that 3rd surgery for another 12 months if he seems like he is still growing and his oxygen levels stay above 80. But they seem to be dropping, especially on his feet and he is losing weight and barely growing.
<<<Caution - extreme venting and angst  beyond this point. Sorry. Sometimes it comes to that>> 

To be honest, as terrified as I am at the idea of another surgery I am crushingly disappointed I can't count on it being over by the end of the summer. I was hanging all my hopes on "Post Fontan living " - a magical land where Macsen could be satting in the 90's,where he would want to eat and he would finally grow because his organs and tissues would be getting the oxygen they need. Where we could plan family vacations without feeling like we are using up money and vacation days from Aaron's job - days we may need for extended hospital stays. A place where we wouldn't have to have fundraisers for ourselves anymore! A place where I can sign the girls up for sports and extracurricular activities because we won't have so many out of town dr appointments. A place where I'm not spending 2-4 hours everyday pumping milk- eating foods and drinking drinks I don't like, desperate to keep my supply up.  And even though there is a possibility we cath this summer, his heart function improves and we schedule his surgery a few weeks later I just can't focus on that right now... it's like I can't see it. All I can see is how hard everything is, how impossible this life feels sometimes, how far removed I feel from everyone who are living "normal" lives. I want to be on the other side of all of this - and I know it will never be over but this part will. This "pre-fontan" time. And I know there are no guarantees that post fontan time will be like I am hoping. We know some families that went home 6 days after surgery with a pink child ready to take on the world and we know  many families who are having a really rough time after fontan and wish they could go back to the glen days. It's so hard to know what will happen - true for anyone I know but I have seen the face of it, the months of rehab after a stroke from surgery, the middle of the night life flights because the child has a cast stuck in his lungs and can't breathe, the listing for a heart transplant. And worse. So do I pray he is well enough for the surgery this summer or do I pray for another year with no surgery and a relatively stable Macsen? I know my Christian friends would say"God has got this. He has a plan. Give it all to Him." That is so very, very hard.