Poor M has been sick. It will be 3 weeks tomorrow. He's had fevers that come and go, lots of phlegm, vomiting (some virus induced but lots just Macsen vomiting,) weight loss,and his digestion has totally slowed down. He has been waking 5+/night for weeks but not wanting to eat, just cry. During the day he plays and laughs, cuddles, looks for his sisters, cuddles more. Aaron and Carys have also been sick - Aaron had to take time off from work b/c he was too dizzy/miserable. Not flu
but A was diagnosed with bronchitis and he is also still miserable 3 weeks later. We have been staying away from therapy and staying away from church so we don't infect anyone there.
We are also trying to get everything organized for Macsen's spaghetti dinner in 1 month and I am feeling overwhelmed. It is awkward trying to organize a fundraiser for yourself :( I kind of hate it. It's much easier to ask for help for someone else "Can you please donate for this other family who really need your help" rather than "Can you please donate to me - for me."That feels... wrong. And during the past 2.5-3 years we seem to have isolated ourselves into a bubble where we no longer have the support we did when we were pregnant. It is our own fault- we haven't attended birthdays, playdates, community meetings like we used to. We are no longer members of clubs. I no longer go to the gym. I rarely see anyone besides our little immediate family, friends at school drop off, and doctors. We have hermited ourselves into having very few local friends. I have many friends across the country who are also heart moms and a great form of support. But they aren't here, and neither are Aaron's or my families who could help us put this together.
We do have some help and I am very grateful to them. My sister G tries to do what she can from MD. We have friends that have offered to cook the sauce which is awesome and another who wants to run the kitchen. And we have some that have sent money which is incredible, and so generous - and I hesitate to even say anything for fear that I sound like a whiny, ungrateful person for all that we do have. I want this fundraiser to be successful so we don't have to do another for a long, long time if ever - and we can just concentrate on the next few months of appointments and then what needs to happen this summer. And in the future I would love to give back by helping other families with all we have learned on the way. I just sometimes wish we could just skip to that part and out of this painful part where we are always asking for help.
I have never see his heart rate so low - never less than mid 90s and that was only when he was coming out of sedation. I freaked out and messaged his card and sent messages to other heart moms I know. Everyone reassured me that it was good - as long as it stays above 60 we are good. And his O2 was 85 which is pretty perfect for a stage 2 hlhser. Macsen is kicking butt! Those steroids are giving him a little 'roid rage - he is even more frustrated than normal - and he is drinking way more milk then I can make. Thank goodness for a small stash in the freezer from our fellow heart mom who donated some milk for M before moving to New Mexico. 
