Friday, July 22, 2016

Black Box Warnings

Today was a pretty simple day at the hospital.  We were at the University Hospital to follow up with Immunology and Shelbie's new dosing of IgG.

Our doc was pretty happy to see that Shelbie seemed much better than she was 3 months ago after having been through a rough biopsy and 6 weeks without IVIG, since we were transitioning care from local providers to specialists in Utah.

The question in his mind has been, are we doing more harm with the IgG treatments than we are good?  He seems to be a real numbers guy and I often feel guarded when it comes to talking about lab results.  There always seems to be a huge gap between her low, somewhat normal labs and the way she feels.  It was good to have that 6 weeks without a treatment so we could see how she did.  She was sick all the time and had to be on antibiotics.  So, in my mind, it's a no brainer...the IgG replacement is definitely giving her a better quality of life.   It also stabilizes her platelets which bounce around.

Our doc agreed and we will continue the plasma transfusions and reassess every 6 months.

But we were getting ready to wrap things up, I mentioned that next week we are going back to sort out the pulmonary embolism Shelbie has and her heart issues.  He was panicked when I mentioned that.

There is a black box warning on the Hizentra, the plasma brand we use that it can cause blood clots.

It's never easy.   It was sort of a dramatic moment the way he addressed that news.  He immediately made it clear that it could have been caused from the plasma.  He made sure we understood the risk we were embarking on by continuing with this treatment plan.

I don't feel in my gut that it was caused by the plasma and I don't see that stopping it is going to be the best thing either.  Clearly, we are between a rock and a hard place and he has no idea what the right answer is for Shelbie either.  I don't imagine he will be wasting one second in meeting with our pulmonologist and cardiologist.

It does feel nice to know that we have a team that actually works together and communicates regularly and  gets along.  I haven't had to beat down some of the egos that providers can grow into so quickly it seems.  It's so refreshing to be in the midst of doctors who don't feel like they are competing or trying to act like God.

At this point, it is just too soon to say where we stand with the blood clot issue.

It happens over and over I sit in these appointments, I am filled with gratitude and clarity that my kids are clearly being cared for by a loving Father in Heaven.  Shelbie's situation is so complex and life threatening but she has been given the gift of life.  The gift to press forward with Faith.  Some days, it can feel the opposite of that and certainly, it is one of those things that you don't see the gravity of the blessing until you see the weightiness of the trial...and...we try not to give the trial any attention until we sit in appointments like this and then, I am overcome with amazement at the blessings we nearly forgot to notice, let alone count.

Guess, we encountered another ruckus at the hospital that required the police to show up!  Twice in a month.  What are the odds of that?  We were waiting in the lobby, at Starbucks because we arrived a little early.  A man went up to the counter and was being incredibly mean and using the most obscene language to the workers.  A woman beside him suggested he calm down.  That started a shouting match and extreme language and escalating anger ensued.  The man left and Starbuck's gave the woman a free drink.  The police showed up and the woman slipped away so she wouldn't get in trouble.  The police literally walked past her, nearly brushing up against her in the crowd of people.  She was right under their nose but had no idea.  There's an analogy in there somewhere.  It was interesting to see this all unfold but still, with all the violence in this country today, I was a little worried that things could have gotten out of hand.

Well...that was that.  I am wiped out.  Completely exhausted.  I don't even remember driving the last hour to get home.

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