The Tajin is Back Home (and so is Khadees!)

 We are back at home!  The last week or so has been nonstop, so we are very thankful to be back at home with some answers.  As I mentioned in a previous post, Khadees has had severe allergic reactions to the dressing and CHG used for his PICC line.  His skin has been raw and continues to break down, even when they’ve placed a new line.  The constant breakdown of his skin made him more susceptible to infection, especially with the blisters he experienced underneath the dressings.  He started IV antibiotics in the hospital and will continue to receive them at home (yay for putting my RN license to work in all aspects of my life!) We also worked with the IV team this admission to find a solution to these constant allergic reactions, and I believe we found it!  He is using betadine to clean, a Silver AR biodisk, and a hypoallergenic tegaderm.  My fingers and toes (and maybe my eyes) are crossed for this all to work! 

Khadees is becoming a pro patient in the hospital.  This time, he packed his bag with the essentials, including an Amazon Firestick, laptop, tajin for fruit, comfy Christmas pajamas (Fall and Christmas are his favorite times of the year!), ear plugs, and an eye mask.  We finished Ms. Marvel and Moon Knight throughout this hospital stay, so huge shout out to Disney Plus for keeping us entertained throughout the weekend.  We are hoping that the next hospital stay will be for his gift of transplant.

Throughout this all, his labs have remained stable.  He is continuing to decline, which is expected with his heart functioning at 15%.  He becomes short of breath even easier than before, sometimes at rest.  He experiences dizziness, especially when going from sitting to standing, but this can also happen at rest.  He is holding more fluid than normal, needing more diuretics to pull the excess fluid from his body.  Most of all, he’s tired; very, very tired.  All of these are symptoms he has had since the beginning, but they continue to get worse as time continues to pass. 

Medications were adjusted and antibiotics started.  We were expecting Khadees to remain Status 7 on the UNOS transplant list, meaning he would be inactive on the list at Status 4.  However, we were told today that he should be able to be re-activated on the list tomorrow, based on the entire team agreeing on that decision.  If he were to receive a transplant, they would continue the IV antibiotics post-transplant until the course is finished.  

Thank you to everyone who checked in on us over the last week.  With as much as this situation stresses us, we are extremely blessed by the amount of support and love we have from our family and friends.  Every phone call, text message, DM, and acts of kindness we are so incredibly grateful for. Your support, continues to keep our spirits and our hopes high.





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