The Marek Times

We would like to invite everyone to a reception for Marek.  I’m not sure what to call it exactly – a gathering of friends, a wake – Ben calls it “a remembry thingy”.  In any case, we would love for all our family and friends to join us in remembering Marek on the evening of Monday, December 8, 2008 at the Fairmont Hotel McDonald, here in Edmonton, in the Wedgwood Room.  Feel free to stop by anytime after 7 pm.  There won’t be any formal speaches or services, but we would very much love for everyone to come out and say hello, and join us for drinks and snacks.

Thanks again to everyone for all their support.  We appreciate all the flowers, cards and well-wishes.  We hope to see you all on the 8th.

Marek Pierce passed away -very peacefully – late in the evening on November 24, 2008.  He fought hard against impossible odds.  He would have been 9 months old in a few days.  He went on his terms – and we are so proud to be his parents.   And I know he touched many people during his short life.

Thank you to everyone who supported us on this journey, especially family and friends – and our extended family at the Stollery Children’s Hospital.

Marek had a lousy night last night.  His sats were low and so was his blood pressure.  There was no apparent reason for it.  He wasn’t agitated or anything.  He just had a crappy night.

Today was a bit better.  More stable – and he seemed to settle out over the day.  The doctor’s don’t know what changed or what happened.  But everyone is entitled to have a bad night.  So tonight, we are going to try to get some sleep.  We’re all pretty tired.

Today, Marek was “better” enough to move to a new room with a roommate (but still in PICU).  The doctors seem to think that the new drug is having some effect.  They are continuing to increase it, and I have to admit, he’s having less de-sats, and he’s even handling the withdrawl better.  Today, the occupational therapists came by (which is a good sign all by itself) to work on his motor skills and he tolerated sitting up and rolling to his sides.  I thought for sure he’d fight it, cry and de-sat, but he didn’t.  I don’t know if he enjoyed it exactly, but he didn’t hate it.  He even managed a smile tonight for Merv.  That was probably the best thing ever.  I so missed his smiles.

I’m a little afraid for tonight and tomorrow because they are switching a couple of his medicine infusions from IV to oral doses.  I don’t know if he will withdraw from the change.  I hope not.  But I’m grateful for today.  He had a really good day today.

They extubated Marek today.  He’s doing well with it so far.  They had to turn down his sedation drugs, so he was going into withdrawl this afternoon, but it seems they have it under control now.  His sats tonight were in the 70’s, so he’s actually doing better than I expected.  We’ll see how he does over the next few days.  There is some concern that he will tire out now that he has to do all the breathing on his own, but he’s a tough little guy.  I’m hopeful he’ll do well.  What does it mean long-term?  We have no idea.  We’re still one day at a time.  Overall, today was a good day.

Marek has a magic toe.  No one can explain it.  Normally they put the sat probe on his big toe – and it reads a little low.  It turns out that if you put the probe on his second toe (the one right beside his big toe) it reads way higher.  Like when his big toe read 65 today, his second toe read 80 – 85.  It was totally weird.  Here’s his sats on his second toe (in green):

Other than that it was a crazy day.  The found a clot at the site of his central line (after 1.5 hours of ultrasound – I don’t know why it took so long) and they found out he has a bacterial infection in his pee, too.   It’s all stuff they can deal with, but it meant he was poked and bothered all day.  They also had to shut off his sedation drugs twice while they dealt with things (he was definitely not happy about that!).  They also turned off the NO, which is good and somehow through all this he maintained his sats at an ok level.  Nothing to write home about (mostly in the 60’s) but I think that’s good considering everything.  I don’t know what tomorrow will bring, but I hope it’s a calmer, quieter day.

Marek had another ok day.  He was relatively stable all day.  His sats seemed more stable than they were and he was having sats in the 70’s more often today too. He is still intubated from the cath, but they are hoping to extubate him soon.  I have no idea how that will go.  He’s having a lot of secretions, almost like he has a cold again, so they are being somewhat cautious about extubating. 

We are trying to keep our hopes up, and so are the folks at the hospital, but it’s hard.  For now, every day is a gift…    Thank you to everyone for the thoughts and prayers – we appreciate it very much.

Marek is settled and reasonably stable right now.  They have started another drug with the hope that it may reduce his pressures.  The chances are not high, but they’re not zero either.  We need lots of prayers and positive thinking. 

I think this is the first time I don’t know what to write.  I want this drug to work.  I want them to fix him.    I want my baby to get better.

Marek had his cath today.  The procedure itself went well.  But there wasn’t good news.  His pressures are very high.  That rules out the Glenn as well as a transplant.  He doesn’t have many options left.  They will try a new drug tomorrow.  The hope is that it will open his lungs and bring down his pressures.  The doctors are not very hopeful though.  We may lose our little man soon.  We appreciate all the prayers from everyone.  Thanks for keeping us in your thoughts.

Marek isn’t well.  Actually, he’s downright terrible.  His sats spent an awful alot of time in the teens and 20’s today.  They did an echo and xrays and blood tests and nothing has changed.  They can’t figure out why he’s de-satting so much.  They re-started the NO and he seemed a bit better after that, but it’s hard to say what it was.  He hasn’t been intubated yet, but I’m not sure how much longer that will be.  They asked Dr. R to bump up his cath as soon as possible and it looks like they will do it tomorrow now.  I have no idea what tomorrow will hold.  I’m exhausted and stressed.   I so hope there’s something they can do for him.  Please, we need all the prayers we can get…