A Couple Victories

The nurses at Mott wear T-shirts that say, "Hail to the little victors".  You know the reference.  It's that silly little song the Wolverines sing to celebrate their teams' accomplishments.  It's true the Wolverines might have a superior basketball team this season than my classically inconsistent Spartans.  But the T-shirts are celebrating all the little ones who have left Mott as victors.  Victors over their diseases, their conditions, their fears, their battles.  It's such a different place, Mott.  There aren't little things going on there.  The stories we hear from other parents there aren't simple ones.  It seems everyone there is fighting a big battle. 

But I was thinking again today about "little victories".  We have little victories inside of the overall big victory we are hoping for.  Sometimes, something small happens and we forget how big it really is.  The last 48 hours for instance.  Louisa was fighting a "little" cold.  But little colds for someone who runs oxygen levels in the 70s-80s are a big deal.  We noticed an overnight drop in her saturation level and alerted the cardiology team.  They felt it was best to bring Louisa in to observe her.  If we felt she was stable enough, they wanted us to bring her to Mott's ER.  Otherwise, we should go to Sparrow and they would have her transferred by ambulance.  That seemed excessive and Mott is only an hour away -- a little victory.  So we made the drive to Ann Arbor and every few mile markers I'd ask Carissa, "Still breathing, right?"

"Yep."

"Still breathing, right?"

"Uh huh.  It's kind of nice she has that NG tube, you can see it move in and out when she breathes." The NG tube is now our friend -- a little victory.  We made it to the ER and Louisa breathed the whole way -- a little victory.  

We walked through the doors and the lady at the desk called out to us, "Name?  Are you Minnaar?"

"Yeah, Louisa Minnaar," I replied.  

"We have a resuscitation room ready for you, is she breathing ok?"  

"Whoa, whoa!  No, no she's not that bad.  We're just here to get her checked out."

"Ok, the doctors called and told us you were coming, we always get a resuscitation room ready for hypoplasts in respiratory distress."  We didn't need the resuscitation room -- a little victory.  

We were admitted overnight for observation and she did great.  She maintained her saturation levels and had a normal chest xray and impressed the doctors and nurses.  We saw our favorite nurses and doctors and even the really pleasant and friendly guy who would clean our room.  They all seemed happy to see us, but jokingly scolded us for coming back so soon!  Doctors and nurses joking with you -- a little victory.  They don't joke when things are going bad.  They did let us go home last night.  We walked out and called to the nurses, "see you later!"  We will see them later, for sure.  But it's feeling normal and almost comfortable there.  Normal, comfortable -- that's a little victory.  I said to Carissa, "You know, it's a victory every time the three of us walk out these doors." 

We grabbed some dinner and got home at about 8:30 last night -- in time to re-pack the bags and swap out the dirty feeding supplies for clean ones.  We were in bed by 10 because we had to get up early to head back to Ann Arbor for our neurosurgery appointment.  Figuring out what you'll need for NG feedings while on the road -- a little victory.  We did forget to bring hot water to warm the bottle so I had to sacrifice my Tim Horton's coffee for the task, but it warmed it up just fine.  Improvisation -- yet another little victory.

We had an uneventful ultrasound from a familiar tech with a Russian accent.  She told us about a guy that works in the radiology department with HLHS.  "He fishes and hunts and wake boards, and is totally normal really.  I mean I just saw a picture of him with a big deer.  He's like 30 or something."  Happy, healthy, 30-somethings with HLHS stories are really encouraging -- a little victory.

Then we met with the neurosurgeon.  He was very pleasant.  The visit was really short, maybe 3 minutes altogether.  Very short doctor appointments are a good sign -- a little victory.  He said the brain bleed looks like it's pretty much completely reabsorbed and there is no sign of any hydrocephalus (excess fluid).  Hydrocephalus is the biggest immediate complication of the bleed she had and he said if it was going to happen, it would have by now.  He'll order one more ultrasound in 4 months just to be sure, but if we want, he won't be offended if we cancel it -- that's how sure he is that this no longer is an issue.  Brain bleeds that are no longer an issue -- a little victory.  

So we walked out the doors of Mott once again this morning with a little more spring in our step.  But wait a minute.  We started to reminisce just a bit about that fateful Friday when things went so dreadfully wrong for Louisa.  We still can't dwell in that room of memories in our minds for too long, but we did just long enough to remember that the "little victory" of the resolved brain bleed was actually a huge victory -- astronomical really -- compared to what was happening when we got the news of the bleed.  

She had arrested and we were sitting in that tiny consultation room off the ICU hallway (We still pass by that room sometimes and I shudder when I see it).  The doctor and fellow and our nurse came in with the news.  She had arrested, was on ECMO, but we were waiting to hear about the brain.  There was a bleed.  Dr. Z said it was a pretty good sized bleed.  This was a major complication because ECMO requires the blood to be thinned and you really can't thin it when there's bleeding on the brain.  He said we couldn't know for sure what the ultimate outcome would be with this bleed and only time will tell if it expands and how much of the brain could be effected.  He told us that it's only a 50% chance that kids who go on ECMO will survive to discharge and this bleed was making that even less likely.  

Essentially, what we heard him saying was that we were going to lose her.  This bleed proved it.  They even gave us the option of stopping everything and just saying goodbye.  I'm glad we didn't take that option because today came.  Today came and that nice neurosurgeon said the bleed has resolved and that she looks great.  Here's the picture below of Louisa getting her scan today from that nice Russian tech.  She looks great.  And those pictures on the screen are of a normal brain (well, as normal as a Minnaar brain can be).  Normal brain scan -- unbelievably huge victory, miracle type victory!  

pretty comfortable during her head ultrasound

So, those "Hail to the little victors" T-shirts mean something to us.  In fact, you might even see my wife sporting one.  It was hard for me to allow it.  There is a block M on it, but I made sure she got a pink one.  I still can't do any maize and blue.  And don't worry, I've seen Louisa's blood, it's definitely got a green tint to it -- my little Spartan victor.