Home with a PICC

Noah was able to come home last night. Just in time for us to throw Shane’s birthday party today. Noah handled it well since he couldn’t participate ( Thanks to Mamaw & Papaw’s Lego distraction) There were several bumps along the way in the hospital including giving him one of his listed allergies when he was put to sleep which caused quite a commotion. He is ok though. The first infusion and learning everything to take care of a PICC line was overwhelming, but we are confident we can do it. Noah’s daily care is more complex as we need to keep his double lumen PICC flushed, dry, and damage free. He is pretty upset about hearing he can’t swim or have baths anymore, but promises of slushees and some LEGOs lifted the sad news. Noah’s infusion will be every Thursday and are 6-7 hours long followed by a 12 hour kidney flush. The process is long and as you can tell by Noah’s face he is not the biggest fan. The drug they are using is toxic and can damage the kidneys. It sounds crazy. I know. We are pumping poison in him to try to kill off some of the BK virus particularly from his bloodstream. This infusion pumps so much fluid in him to try to protect the kidneys he swells to a very uncomfortable level and looks like he may vomit. There are no other options and this process has no guarantee. We had some tough conversation about “what if’s” but we will wait and see before we share those potential outcomes. Honestly, we need this to work or things could get really bad really fast. Please call on any prayer warriors to pray for relief from this BK virus. We are ready to fight????????#BraveLikeNoah

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