2HeartsAreBetterThan1

  First and foremost, we are so incredibly thankful to all we have received this week.  Earlier this week, I posted an Amazon list to Facebook of things we would need after Khadees’s transplant.  Within 2 days, everything on the list had been purchased and packages began to arrive.  It is so difficult to be in a position of needing things or asking for help, and we hesitated posting the list.  Thank you so much for helping make sure he has everything we anticipate him needing after his transplant. This week, we continued to battle whatever allergy Khadees has with his PICC.  We have changed different cleaning agents (CHG, to betadine, to alcohol), hypoallergenic tegaderm, oppsite, etc. and his skin continues to breakdown.  Unfortunately, the skin breaks down and sloughs off, causing dressing changes to be as frequent as daily.  The dressing changes are excruciatingly painful as his skin is so raw.  Yesterday, his transplant team requested he ...

        I’m not even sure where to begin this week’s update.  Khadees remains positive and in good spirits, but we have continued to notice the decline in his overall health and abilities to do daily things.  Most days, he has the most energy in the morning, able to do a few things before the overall exhaustion sets in.  Occasionally, he will have a good day, even though he is exhausted.  However, he is quickly dizzy, tired, and short of breath.   At his appointment with the transplant team this week, due to the decline Khadees has been feeling at home, they got him in right away for a heart catheterization to see exactly how his heart was doing.  Depending on what the heart cath showed, he would either be transferred to the CVICU as a Status 3 and would remain in the hospital until transplant, or he would be able to be discharged home and continue to wait for transplant at home.  In between his appointment and his heart cath, ...

  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 ...