An Update

 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 get a new line placed and the old one removed to hopefully prevent another infection, while we figure out the next best step.  For whatever reason, his body isn’t tolerating the PICC, this is now the fourth one placed since July.  This cycle of PICC causing such a breakdown with his skin is so risky, because the raw skin makes him even more susceptible to infection, as does the frequent dressing changes.  When there’s an infection, this causes more stress to the heart, which could cause Khadees to decline quicker.  This all isn’t sustainable, so the team is trying to come up with other options.  There is a discussion of placing a port, which would also mean an ICD (implantable cardioverter defibrillator) since he wouldn’t be able to wear his life vest with the port.

Khadees has continued to be tired, dizzy, and short of breath, with some days better than others.  His best time of the day continues to be the morning, as he has always been a morning person (and I’ve always forgiven him for that, as I am someone who needs multiple doses of caffeine to function).  Most days, he spends the majority of the time on the couch or in bed.  If he gets a good day where he has more energy, he tries to do what he can, but being out and about usually requires hours or days of recovery.  (Today he tried making it to half of Kellan’s soccer game and dinner for our dear friend’s birthday.  It ended with him barely making it to the car.) But, we have to take the good moments when we can get them and use that time to do things to keep his spirits high.  

He was able to see everyone at his work this week, and we are so thankful for all of his Ohana Family.  Khadees doesn’t receive any short-term disability and the time he can get for FMLA is limited.    There is a required training once every 6 months, that requires watching a video.  His Ohana Family helped get him there, had a wheelchair available to get him to/from, and kept him safe while he was there.  I am so thankful that he has such amazing people to help him.  (Huge shout out to Daniela for transporting and helping arrange this!)  

Many have asked how the kids are and how I am.  For me, it is day by day and often moment by moment.  As a nurse, my fight or flight reaction often takes over and gets me through the days.  The moment it is quiet, I am overwhelmed with all that still needs to be done and how helpless I am in Khadees’s need for a heart.  It is also near impossible to take care of 4 people, work, and keep up with the house.  My to-do list seems to constantly grow.  Khadees and I have always been such a great team, so I am drinking extra caffeine and surviving in chaos.  We went to a wedding once, where they said marriage wasn’t 50/50, that sometimes it is 80/20 or 95/5.  I know Khadees often gets frustrated or feels bad for not being able to do more, so this is something I constantly remind him of.

As far as the kids, Alice at age 2, still has very little idea anything is happening.  However, she has been curious of Khadees’s PICC line, often trying to play with it or tug on it, which has added to our stress.  Stella is very emotional and surprisingly observant of lots of things happening.  She asked me last week if Khadees is dying.  She always manages to ask big questions like this in moments where you don’t have a second to think or excuse yourself, like when I am driving down the road with just the two of us in the car.  Kellan has been frustrated and I think mostly with so much being out of his control. He continues to read a lot, which I think is a great escape from reality.  Both Kellan and Stella are in therapy to help them process all of these big emotions. When all of this started, we agreed that we wanted to keep the kids in all of their extra curricular activities and keep their lives as normal as possible.  I think this has helped, since they have outlets and other things to focus on besides the scary things happening with Daddy.  

Many are asking what we need and how they can help.  It’s so strange to be in a position to ask for help, and it has been something I have been struggling with, but am trying my best to get better at.  Thank you to everyone who has reached out, sent us kind words, prayers, donations, and meals.  We are beyond thankful to the amazing village that has supported us through this.