Answers are good, but not always what you want to hear

It is a good thing the princess seems to be enjoying her hospital stay. It just got a lot longer today. Test results from her bronchoscopy came back positive for PCP, pneumocystis pneumonia. It is unique to transplant patients and other immune-suppressed people such as those with HIV. Healthy individuals don’t get sick from it. The good news? There is effective treatment. The bad news? It is a three-week course of IV antibiotics. That means we are calling our cozy room on 3M home for the next three weeks. By the time we finally get to go home, this hospital stay will be longer than her transplant! Now Aaron and I are trying to figure out work, childcare, sleep schedules.

 

Halloween decorations went up on 3M today

It is unusual for heart transplant kids to get PCP. There are differing opinions on giving the antibiotics regularly as prophylaxsis for PCP. Some transplant programs still do it, others have stopped. In Addison’s case, now that she has had it once, she will have to go on antibiotics for the long term. Her Tacrolimus absorption has skyrocketed from 3% to 20% in the last few months, which is what last Tuesday’s kinetics blood test showed. That could explain why she got PCP…her immune system was suppressed too much.

Once she gets off oxygen, not that we are in a big rush now, we will be able to take Addison out in between the 4x a day antibiotics. And we are also off infection control. The princess is free to wander the halls without a mask.
I am glad we know what it is and there is a light at the end of the tunnel…though it seems like a very long tunnel from where we are standing right now. We will get through it…makes it so much easier when the princess is so darn cheery!

Love,
Elaine, Aaron and Addison

6 thoughts on “Answers are good, but not always what you want to hear

  1. Oh Elaine…hugs to you, Aaron and the wee Princess…good thing it didn’t happen on a flight to Asia though…I am sure there are days when Addie’s cheery big smile and mischievous eyes are all that get you through it and give you the energy to hang tough…yet another setback for one very cute but resilient little cookie ❤

  2. You and Aaron are so strong, as is your little princess. Such amazing strength to fight this fight. Addison is so cute and despite this setback, she’ll bounce back no time and off to Homg Kong the three of you go!

    Cheers from Victoria, BC!

  3. I think Princess Addie is just enjoying all the attention, presents, yummy food, Dora-related everything, TV/iPad that she is getting now!!!!! So thankful they found out what was “wrong”……I’m thinking about you guys constantly…and will continue to do so in lonely Phuket….!!!!!

  4. Great Grandma says Hi to the little Princess and hopes she is out of there soon. Great Grandma knows all about that pneumonia stuff. Hope to see you soon Addison.

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