{"id":194,"date":"2024-09-20T02:46:32","date_gmt":"2024-09-20T02:46:32","guid":{"rendered":"https:\/\/cota.org\/cotaforgabrielaswarriors\/?p=194"},"modified":"2024-09-20T19:54:16","modified_gmt":"2024-09-20T19:54:16","slug":"transplant-post-op-cath-update","status":"publish","type":"post","link":"https:\/\/cota.org\/cotaforgabrielaswarriors\/2024\/09\/20\/transplant-post-op-cath-update\/","title":{"rendered":"Transplant Post-Op Cath Update"},"content":{"rendered":"\n
\n

<\/p>\n\u201cYou see, I knew the assurances of God\u2019s love in passages like Romans 8 and others. I believed somehow God would work out everything for his good purposes. I never doubted that. Yet my grief was not tame. It was vicious. I battled fears, disappointments, and sorrow. And in my journey, I discovered the grace of lament, a song I never wanted to sing.\u201d
From Mark Vroegop\u2019s Dark Clouds Deep Mercy, pg. 20.<\/cite><\/blockquote>\n\n\n\n

<\/p>\n\n\n\n

Today has been a hard day. No, it has actually been awful. I\u2019ve had to step away from Ela several times to find a private place to cry. And this is hard to do at hospitals because there are too many people around. Most of them mean well, of course, the art lady and the music lady and the nurses who like Ela and want see how she is doing, the doctors, the social worker, etc\u2026they ALL mean well but sometimes you just want to be by yourself so you can take a breath and let some of what has been bottling up inside burst.<\/p>\n\n\n\n

Friends, I\u2019ve struggled to love the Lord for a couple of days now. I find myself giving Him the cold shoulder because I am likely mad at Him. And I share this with you for a couple of reasons. 1) If there are any non-Christians reading this, I want you to know that Christianity has nothing to do with having it all together. Christianity is for broken people\u2026people in desperate need of God\u2019s grace, mercy, and patience. 2) If you are a Christian, then I want you to start praying more often for your spiritual leaders. They have their hard days too. Pain doesn\u2019t care how spiritually mature you are, pain will hurt you anyway. <\/p>\n\n\n\n

Yesterday\u2019s walk back to the CICU was a great disappointment. Today\u2019s talks about \u201cacute rejection\u201d and \u201cdoing what we can to save the heart\u201d have been devastating. <\/p>\n\n\n\n

Leslee and I both feel guilty. Although this whole thing is not our fault, we feel like we\u2019ve deceived Ela by assuring her that getting a new heart would make things better. Yet, Ela has not experienced much besides pain for the last 14 days. She has been stabbed with needles dozens of times. She has had IV\u2019s placed in her via ultrasound\u2026that\u2019s 10 to 15 minutes of screaming for help as someone digs in her arm with a needle while someone else holds her down. She has had to deal with fluid in her lungs making it difficult to breathe. She has been subjected to drugs and substances that mess with her mind and her mood and her sleep. She has been starved and denied water for almost whole days in preparation for procedures. <\/p>\n\n\n\n

Although we are thankful for her life. These are the seasons of life where you ask yourself: Is all this pain worth it? Would she not be better off with the Lord? <\/p>\n\n\n\n

Let me tell you what we understand. CHOP has a particular regimen for kids who receive heart transplants to make sure the body does not reject the new heart. The standard regimen was not strong enough for Ela. After our warnings about her strange behaviors and steady decline and their own assessments they decided to take her back to the CICU to go through a stronger regimen. <\/p>\n\n\n\n

That is part of what took place today. Ela will need higher doses of immunosuppression medications to make sure her body does not attack this new heart. One of the treatments is steroids; however, we have found that her blood sugar spikes with this particular steroid so now she\u2019s a functioning diabetic until further notice. We\u2019re now having to learn about administering insulin to keep her blood sugar in check. Tomorrow, she is going to go through something called aphaeresis. At the cath today, they inserted this huge thing on the side of her neck with an \u201cin\u201d and an \u201cout.\u201d They are going to draw blood through there and send it to a machine that will remove antibodies and then send the blood back into her. This is a couple hour process that should keep the body from attacking the new heart.<\/p>\n\n\n\n

We are overwhelmed. There\u2019s no other way to put it. <\/p>\n\n\n\n

I\u2019m grateful that IBC has given me the time off, I can\u2019t image Leslee having to carry this burden on her own while I\u2019m away. I am grateful to my parents and them caring for the boys while we are away. I am grateful for Faith Christian Academy and for their patience and care of Josiah. I am grateful for all the prayers and all the cards and the gifts and the money. But friends\u2026this is still really hard. I am sorry I wasn\u2019t more encouraging. Today was a day to lament. <\/p>\n\n\n\n

We might need to take a couple of days off from the updates. Not sure we\u2019re emotionally up to it. However, we will inform you if anything big changes. <\/p>\n\n\n\n

\n
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\u201cYou see, I knew the assurances of God\u2019s love in passages like Romans 8 and others. I believed somehow God would work out everything for his good purposes. I never doubted that. Yet my grief was not tame. It was vicious. I battled fears, disappointments, and sorrow. And in my journey, I discovered the grace of […]<\/p>\n","protected":false},"author":1911,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-194","post","type-post","status-publish","format-standard","hentry"],"acf":[],"yoast_head":"\nTransplant Post-Op Cath Update - COTA for Gabriela's Warriors<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/cota.org\/cotaforgabrielaswarriors\/2024\/09\/20\/transplant-post-op-cath-update\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Transplant Post-Op Cath Update\" \/>\n<meta property=\"og:description\" content=\"\u201cYou see, I knew the assurances of God\u2019s love in passages like Romans 8 and others. 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