A Little Good News

Morning rounds are always a bit stressful.  A meeting of the minds (with staff from oncology and PICU) about Harper's status and what comes next.  We often get updates on the results of tests and labs as well as an indication of what they want to do for the day.

Sometimes the news is good.  Sometimes not so good.  Today, just about everything was positive.

Yesterday (Saturday), during the day, her blood pressure and respiration were both all over the place.  She spiked high BPs and then bottomed dangerously low at other times.  Her breathing was everything from stable to erratic.  They changed vent settings.  They adjusted meds that help control her blood pressure.  They gave fluids (because she was hemodynamically dehydrated), blood, platelets and albumin.  They adjusted her A-line (arterial line through which they can take arterial blood for tests and monitor her BP constantly). It was a stressful day.  At any one time we had as many as 3 doctors and 4 nurses in our room watching her and adjusting things to make her more stable and comfortable.

In contrast, overnight her status was pretty stable.  Her BP was pretty consistent and her breathing was normalized and regular.  We got to sleep a little and she was more comfortable.

This morning we got the most recent results of the adenovirus counts in her blood stream.  Her last test had the count at 15 million copies of the virus in her blood.  As of Friday (we got Friday's results Sunday AM) they counted only 330,000 copies.  That is a MASSIVE drop in viral load, and an incredibly good sign that her body and the antiviral drugs are doing their jobs in clearing this infection.

Her white counts continue to climb, despite the discontinuation of her Neupogen and Leukine.  Her white count is 13.7 and her ANC is over 11,000.  It appears the graft of her stem cell transplant has taken a strong hold, which is very promising.  Also, given the heights to which her whites have climbed, we are hopeful that the time period for an inflammatory response has passed, and we don't have to worry as much about a big step back if her white cells "over-react" to the adenovirus infection.

Also this morning we learned that they are intending to leave her blood pressure controlling meds alone today, allowing her a day to be stable and not jump around all over the place.  This should further allow her to rest, and should set us up for better starting point for potentially starting to ween her off some of the meds in the coming days, as we attempt to get her off the vent and move her back out of the PICU.

They did an Echocardiogram yesterday as well.  The results show a little fluid around her heart, but not enough to logically account for all her cardiac issues yesterday.  Nor is it enough for them to want to "do" anything about it.

They also did an abdominal ultrasound yesterday - looking for signs of VOD (Veno-Occlusive Disease) which is a potential negative outcome from the chemo therapy.  VOD is a very serious condition that carries with it a pretty high mortality rate.  Fortunately, Harper doesn't show signs of serious VOD on the ultrasound (which would be reversal of bloodflow in the liver).  However, other signs such as liver function tests as well as swelling that can be palpated (felt by hand) in her abdomen do indicate some mild VOD.  Fortunately the level of VOD she likely has (it would take a liver biopsy to confirm if she really has it - not something we're going to do) is reversible and just requires some supportive care.

In order to help, supportively, with the mild VOD, as well as give better ability to give oral meds (which are requires as pre-med and post-med for the antiviral drug), they will also attempt to put in an NJ tube (again - if you recall, she had one before and lost it because of vomiting).  This will allow them to leave her NG sump (vacuum that sucks the contents out of her stomach) in place and working when they give oral meds (like the probenecid prior to and after the cidofovir and the actigall to help her liver).  I'm also happy they will be doing this under a level of sedation, because doing it again later while she's more conscious brings with it a serious chance of anxiety and stress for Harper.

Overall, after several stressful days in the PICU, it feels like we've turned a corner.  We may finally be out of the woods when it comes to major risks.  Obviously things can still go wrong (and I'm confident some of them will) but they feel manageable at the moment.

Continued prayers, kind thoughts and good juju sent her way are all appreciated.  With a little luck, we could be looking at single-digit days until she is off the vent and (hopefully) out of the PICU and back to the oncology floor.  We won't hold our breath, but we like the direction things are headed.