I spoke to Dr. Law for a while about Job's cough and went over Job's long history of left vocal chord paralysis and his various swallow studies and his propensity to vomit when agitated. The thought continues to be that this is not a cold but something physiological. Is his NG tube irritating the back of his throat? Is it soreness from the ventilator? Is it difficulty passing saliva through his oral larynx? It sounds as if Job is clearing his throat when he coughs rather than something from his lungs. His x-ray is clear and he continues to be asymptomatic, so hopefully Speech will have some answers for us tomorrow.
In addition to starting Speech Therapy, I also asked that we start Physical Therapy and Occupational Therapy tomorrow. Obviously we'll go very slow, but I don't want to wait until Job is ready and then wait a few days more for the consults to go through.
Dr. Law also answered my questions about Job's left lung and left pulmonary artery (LPA). Even 10 days post-op, they haven't gotten a good picture of the flow through the LPA and the assumption is that it is indeed stenotic (narrowed). Job's LPA was stented two years ago and during the transplant itself the LPA replacement and new connection took a great deal of time, so we've all known there could be additional issues. If there is stenosis, then a stent will likely need placed again.
If this LPA stenosis was Job's only concern, it wouldn't be an issue. Apparently, it's not uncommon to transplant a heart with only one functioning lung! But because Job has had many other complications in his life, this LPA stenosis will probably mean a slower recovery for him.
10:00am update:
Rounds were pretty boring today! The main question is what to do about Job's blood sugars and whether or not his cough is because of a virus. Both questions can only be answered with further observation.
I've received many questions about our ability to connect with the donor family. As I understand it, we cannot receive any information about the family from the hospital in order to protect their privacy. We were told that the heart Job received was small and that it was on ice for 3.5 hours, but they can't even tell us some of the medical details about the heart (like what markers for disease or infection it has). We get to trust the team here at SCH that it was the best fit for Job.
One year post transplant (October 18, 2019) we can send a letter to the donor family through LifeCenter Northwest, our regional organ donation procurement organization. The family is then notified they have a letter and they can choose to accept it or wait to accept it. LifeCenterNW facilitates these first rounds of communication, which is kept mostly anonymous, until both families consent to sharing contact information. We'll be allowed to share that we're in Washington state, but not which city, and our first names, but not last names, and so on.
Some families choose to meet and stay in touch and other families choose not to - it will really be up to the donor family.
8:00am update:
Job rolls around in his bed, on top of all his tubes and wires. He likes laying sideways and holding on to the crib "slats".
He was really happy to see me when I woke up and smiled at me and interacted with me a little bit as I showed him some of his dog toys. Then he got tired out and covered his face with his hands and turned his head away from me.
I was expecting him to be tired... but probably after 10 minutes of activity, not 2 minutes. I'm trying so hard to not have expectations but it seems impossible to let go of them completely. So then I try to hold my expectations loosely... but that's hard too.
When he was in surgery and during those first days post-op it was easier to just be grateful he was even alive. Now, perhaps, I'm taking that for granted and focusing too much on the next step and how soon we can get there. I have a lot of quiet time sitting in this hospital room, by Job, so I've had lots of time to think about how deeply discontent I am and how deeply I want control.
I've always known these things about myself, but Job's medical issues give me ample opportunity to grapple with the reality of how pervasive my desire to orchestrate everything really is and how very impatient I can be.
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