Stranded at the Hospital

 For the continued countdown, it has been 112 days since Khadees has been on the transplant list.  141 days since we first found out his diagnosis.  I’ve been meaning to post all week, but sometimes writing it all out makes it all seem so real.  There are some nights that I sleep at home instead of the hospital, and when I first wake up in the morning, I assume he is in bed next to me and our day is going to start normal, with normal functioning hearts.  Then, I realize the body next to me is any one (or all) of our kids that managed to sneak into bed with me in the middle of the night and that Khadees is still in the hospital, still waiting for a heart transplant, and that we are currently living our worst nightmare.

Khadees has been in the hospital since November 2nd.  With the continued issues he was having with his PICC, we needed to figure out another option.  Our amazing hospitalist pulled out all the tricks and even managed to get a dermatology consult (those that work in the healthcare field know that dermatology doesn’t go to hospitals).  They patch tested all the dressings, and took a piece of a PICC line and patch tested by taping it to his skin.  

We discovered that he is allergic to polyurethane, which is used in almost all central lines, tunneled lines, and ports.  (Side note, this is also the same man who could wash his face with dish soap and water with no reactions.)  There are PICCs and ports that are made only of silicone, but when Vascular Surgery was consulted they said they will not place a silicone only line, as it is a higher risk for infection and they are fragile.  If it were to break, Khadees could face major complications and would need exploratory surgery to find it.  The PICC team and IR also agreed that Khadees no longer has veins capable of taking a PICC due to all of the scarring from the previous lines.

Peripheral IV’s are made of silicone so Khadees does not react to it.  However, the milrinone can only be ran through a peripheral line for up to 7 days, due to how toxic it is to the veins.  He is now on his second peripheral line.  Unfortunately, he doesn’t have many veins left that can take peripheral IV’s either.  If he loses all access, he will not be able to receive the milrinone and will decline very quickly.  If this were to happen, they will need to surgically place a special device called an Impella Heart Pump to support his heart.  The Impella would not be able to come out until he receives his transplant.  

The Impella is a last resort, as there are many complications and risks.  I am told they can place it in his chest, versus his groin, which gives him more freedom to move around, but from what I am told, most patients are miserable while on it.  Depending on who you ask, there is a time stamp of 10-30 days, although I am told that patients have been on it for up to 90 days.  Khadees would be upgraded to a Status 2 if he needed to be placed on the Impella.

His transplant team is petitioning UNOS (United Network for Organ Sharing) to move him up on the list and/or list him in another region.  Due to this allergy, he’s losing access for intravenous medications that are supporting his heart.  If we lose complete access, he will NEED extreme measures to stay alive.  This is incredibly scary and overwhelming.  We are hoping to know if UNOS approves the petition in the next few days.  

What we do know for now, is that he will remain hospitalized until transplant.  He is bored and looking for suggestions for things on Netflix, Hulu, or any streaming service.  If anyone has any good suggestions, please let us know!  As always, thank you to each person who has reached out to us, prayed for us, listened to me cry, given me the much needed hugs, and continued to support us.  We love you and are so thankful for the people in our life that continue to surround us with love and support.