{"id":17,"date":"2019-11-05T00:00:00","date_gmt":"2019-11-05T00:00:00","guid":{"rendered":"https:\/\/cota1.wpengine.com\/cotaforlucas\/2019\/11\/05\/halloween-weekend-update\/"},"modified":"2019-11-05T00:00:00","modified_gmt":"2019-11-05T00:00:00","slug":"halloween-weekend-update","status":"publish","type":"post","link":"https:\/\/cota.org\/cotaforlucas\/2019\/11\/05\/halloween-weekend-update\/","title":{"rendered":"Halloween Weekend & Update"},"content":{"rendered":"
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Journal entry by Andrew Fadenrecht<\/span> —

It’s been fairly status quo for Lucas medically the last few days. The team has been working (since we got here) on balancing body fluids using diuretic medications and electrolytes. These tweaks constitute most day to day adjustments. Too much fluid in his body and he’ll be congested and coughing, too little and he’s dehydrated and sunken. This is a daily experiment for now, and a challenge with all cardiac kids. <\/p>\n

It’s also a battle getting him to eat enough. They’ve adjusted his formula a number of times, trying to find the right balance between volume and calories. We really want to make sure he’s gaining weight, and it’s stressful when he’s not. Hoping we can find the right mix to keep him gaining. They’re adding an appetite stimulant that may help. <\/p>\n

Lucas will have another Echocardiogram tomorrow, hopefully confirming the lowered lung pressure findings from last week. <\/p>\n

I also took Addy in for an Echo here. We weren’t too anxious, because her pediatrician had referred her for screening at 18mo, and she was cleared with an innocent heart murmur. Well, she was cleared again as all normal – thank God.  <\/p>\n

Corey and I are next, we’re working to set up Echo appointments to clear us too.  Everyone’s saying it’d be very unlikely one of us are affected, we’d have likely had symptoms by now. <\/p>\n

We had a fun Halloween here, the hospital did a great job – all the staff were dressed up, and they had a great Halloween party in the playroom for Addy! Addy also got to meet the Mariner Moose at the Ronald McDonald house, which gave her all the scare she could ask for this year. <\/p>\n

We’ve been SO grateful for the consistent onsite help and support we’ve had from our families. Our parents, and Lucas\/Addy’s Aunties and Uncles (and more) have been here to help in any way we need. This is so significant, I literally can’t overstate it. There are so many kids here who don’t really have anyone around. Maybe they have a single parent that has other children at home, or they’re out of range for a drive, or must be at work…who knows. It’s sad. But we’re grateful to have close families, it’s made such a huge difference. <\/p>\n

Corey’s folks Roger & Kathy (Addy & Lukey’s Grandma and Grandpa) found a “mother in law” unit a mile away within days of us getting here. They packed and moved up to help us the week after we got here. Unbelievable!!! They’ve been here for us in every way would could imagine, and some we couldn’t. <\/p>\n

Addy & Lucas’ Grammy and Poppa (my parents, Allen & Marilyn) have been so incredibly helpful, and are up regularly to support. They were here for a long weekend to spend time with us all, help out however they could, and help give Grandma and Grandpa a break. They took turns playing and hanging with Lucas, taking Addy on adventures, and helping us stock up and organize. <\/p>\n

There’s things we’ve had help with that couldn’t have even hit our radar. <\/p>\n

My Mom (Grammy Marilyn) prepped our house for extended leave, cleaned out our fridge, and hunted down forgotten items to send\/bring up here. <\/p>\n

Grandma Kathy and Grandpa Roger took in our ol’ dog Jazzy (she’s a HANDFUL) – and are working with Corey’s brother Geoff on a longer term care plan.<\/p>\n

Even thinking of these items sounds impossible to us right now. <\/p>\n

We’re so grateful for our support team, and it’s SO comforting for Addy and Lucas to have the relationships and familiarity with all of their regular caretakers jumping in. They LOVE their Grandparents and extended family! <\/p>\n

We continue to expect that Lucas will go on the Heart Transplant list this Wednesday, 11\/6. <\/p>\n

I’ve been talking with our Transplant team here at Seattle Childrens, and learning more about ways for everyone to support Lucas. I’ll be sharing more shortly. <\/p>\n

Appreciate all the prayers, love and support you’re sending to Lucas and our family!<\/p><\/div>\n

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Journal entry by Andrew Fadenrecht — Nov 5, 2019 It’s been fairly status quo for Lucas medically the last few days. The team has been working (since we got here) on balancing body fluids using diuretic medications and electrolytes. These tweaks constitute most day to day adjustments. Too much fluid in his body and he’ll […]<\/p>\n","protected":false},"author":0,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-17","post","type-post","status-publish","format-standard","hentry"],"acf":[],"_links":{"self":[{"href":"https:\/\/cota.org\/cotaforlucas\/wp-json\/wp\/v2\/posts\/17","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/cota.org\/cotaforlucas\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/cota.org\/cotaforlucas\/wp-json\/wp\/v2\/types\/post"}],"replies":[{"embeddable":true,"href":"https:\/\/cota.org\/cotaforlucas\/wp-json\/wp\/v2\/comments?post=17"}],"version-history":[{"count":0,"href":"https:\/\/cota.org\/cotaforlucas\/wp-json\/wp\/v2\/posts\/17\/revisions"}],"wp:attachment":[{"href":"https:\/\/cota.org\/cotaforlucas\/wp-json\/wp\/v2\/media?parent=17"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}