The Marek Times

Just a few new pics of Marek…

And these ones are not exactly recent, but they are some of my favorite pictures of Ben.  This is in Disneyland, just before we found out that Marek would be born with a ton of heart defects…  it seems like a lifetime ago.

We’re home!!!  They discharged us this afternoon.  Marek is stable (although his sats are still a bit weird) so they sent us home today.  It’s so awesome to be home for the long weekend.  I don’t know how long we’ll be at home, but we’re here for now and I’m going to enjoy it while it lasts…

Well, as of this morning, we’re still in the hospital.  Not sure what today will bring.  Thursday morning we were getting set to be discharged – Marek did great after the cath - when all of a sudden his oxygen sats dropped REALLY low.  And the more the doctors, nurses, residents and respiratory therapists gathered around his bed, the worse he got.  It seemed like the more they tried to fix him, the more he tanked.  Eventually the doctor in charge ordered everyone out and told me to hold Marek and get him settled.  He figured the only way he was going to improve was to be left alone.  All the external oxygen in the world wasn’t going to help if he shut down.  As soon as everyone left, Marek settled, fell asleep and his oxygen started climbing.  It was so awful – he was incredibly close to being re-intubated and going back to the PICU.

So since then, his oxygen has fluctuated a whole lot.  We also discovered yesterday that the probe reads different on his hands than on his feet (especially when he’s awake).  Seems my amazing little man sends his oxygen to the body parts that need it.  His feet just aren’t a priority, I guess.  It gives me hope that the lack of oxygen isn’t having too bad an effect on his brain.  Hopefully he’s protecting it.  On his hand yesterday, we were getting readings in the 70s and 80s while his feet were reading 50s and 60s.  Pretty weird.  Even the doctors are kind of baffled.

Anyway, it sounds like Marek will be the topic of discussion after the long weekend and we find out midweek about what the plan for him will be.  Talking to people at the hospital, I’m freaking out less about the transplant option.  It’s still a last resort, but I’m less terrified (thanks Jen!).  My gut says that they will try other things first, though.  It will be interesting to see what plan they come up with.

Through all this though, Marek is happy and smiling.  He loves his extended “family” of nurses and doctors and has smiles for all of them.  Even the ones that come and poke him (just not while they’re poking him!).  What a tough little dude.

I can’t believe Marek is 6 months old today.  What a crazy 6 months it has been…

He had his cath today.  The procedure itself went well and he’s resting and recovering well tonight.  If all goes well, the doctor may send him home tomorrow.  I won’t count on it just yet though.  As for the results of the cath, his pressures were a bit high, as expected, but it means that they’re not sure exactly what they’re going to do yet.  It means the Glenn may be more risky than they’d like so they’re going to discuss options and figure out a plan.  They know they have to do something, but they’re worried that he won’t tolerate the Glenn.  They will likely discuss options such as transplant or reversing his ventricles (which would buy him time, but would likely mean a transplant down the road) or attempting the Glenn to see how he does.  I’m trying really hard to stay positive, but there’s so much uncertainty.  I just want my little boy to grow up and be happy.

Anyway, I’m exhausted now.  I will post more when I know more.

Why is that when we get a reasonable plan of action, Marek never wants to follow it?  The plan for this week has totally changed.  Now, instead of going for pre-admission on Wednesday and cath on Thursday, we are now being admitted tomorrow and staying for the cath on Wednesday.   I don’t know how long we’ll be in there afterwards.  I just hope he’s a candidate for the Glenn and it gets scheduled for soon.

Marek’s other big issue right now is his lack of weight gain.  I think he’s gaining, but very slowly.  He’s drinking high caloric formula, but he’s still just so tiny.   He currently weighs 5.1 kg or 11 lbs, 4 oz.  One more thing to obsess about, I guess.

Please send us thoughts and prayers.  We’re really hoping for a good week.  I will post as the week goes on – stay tuned.

It’s been a crazy week.  And this week will be just as crazy…

I think we finally have Marek weaned off the narcotics.  Yesterday was the first day without any and he’s still ok today.  I can’t believe how awful it was to watch him withdraw.  Somedays I really wish he could talk so he could tell me what’s wrong.  It’s horrible trying to guess what the problem is.  Is his heart failing?  Or is he withdrawing?  Or does he just need to poo?  Anyway, we did get it figured out and he’s mostly back to his happy smiley self.  And he’s sleeping fairly well again too.  Not through the night like he used to, but more than an hour at a time like he did last week.  And slowly Merv and I are catching up on sleep too.

It’s hard watching Ben react to all the stress in the house too.  We’ve spent most of the summer in the hospital and I feel like we’ve missed out on summer.  Ben’s acting up a bit (just with me mostly) but I don’t blame him.  I spend all my time obsessing over Marek.  I hope he knows I really would rather be playing CARS with him.  He’s funny though – today I asked him to get dressed (like 50 times) and he actually mooned me!!

This week will be another stressful one.  We start tomorrow with a visit to the cardiologist.  Then Wednesday we have pre-admission clinic and Thursday is the cath.  Please pray that all goes well this week, that he’s a candidate for the Glenn and that they are able to do it soon.

Ugh.  This is totally bumming me out.  Marek is still having insanely cranky episodes, that sometimes last for hours.  I think it’s a combination of the withdrawl (still!) and colic.  He’s eating more than ever (which is good), but he’s a bit gassy, although definitely less so since we switched to slow flow bottles.  He’s also spitting up a lot less with the new bottles (those suckers are $11 dollars each, but worth it!)  Today he was definitely withdrawing (shakes, kicking and lip smacking) – and he cried for hours until we finally gave in and gave him drugs.  I hate to do it but it was really awful.  I wish he’d have a good night’s sleep.  That would do us all some good. 

Yesterday, the home care nurse came to see Marek while he was having one of his crying episodes.  She sent us into the hospital.  But by the time we got there, he was settled and so the doctors pretty much just sent him home again.  They did echo his heart, so we know his heart function is still ok.  They said he’ll be much more stable after his next surgery.  I really hope they do it soon.  This is so hard.

We’re home!!!!  Marek came home with his feeding tube and oxygen, but I would have taken his whole darn hospital room home if I had too.   Technically, he’s only going to be home for 10 days or so – he goes back the week of the 25th for the cath procedure, but still, he’s home.  He’s also on a ton of medication, so there’s a fair bit of learning and re-learning to do, but we’re getting the hang of it.  The biggest new thing is the oxygen.  The respiratory guy that came to the house to bring us all the oxygen was really good and explained everything really well.  All in all we’re just super happy to be home.  Here’s my happy boys…

Tomorrow will be interesting.  They’re gearing up at the hospital to send us home.  They’ve arranged for home oxygen, home care and home nutrition.  I’m supposed to get training on the oxygen and his new medicine schedule tomorrow.  Had the home nutrition training already.  Marek just has to behave.  I’m quite nervous.  I’m not sure if I’m nervous that they might not send him home, or if I’m nervous that they might actually send us home.  He’s definitely much better, but I’m still worried. 

If he does come home tomorrow, he’ll only be home a week or so.  He has a cardiac catheterization procedure scheduled for August 25.  That’s when they’ll see if he’ll be good for the Glenn surgery.  Keep us in your prayers and wish us luck for tomorrow!

Another quick post before I go to bed.  It’s been a long day, but Marek is doing well.  Except for some periodic withdrawl symptoms, he’s back to his old self.  He’s laughing, playing and “talking” just like he used to.  It was so awesome playing with him today and getting so many smiles.  They would like to send us home from the hospital, and hopefully will soon, but he will have to come home with oxygen and the feeding tube/pump again.  He doesn’t have all his strength back yet, so he needs a little more support right now, but he’s getting there.  His other problem lately is he’s gagging/spitting up a bit.  I’m not sure if it’s related to the withdrawl or his high calorie feeds, but hopefully we’ll get that sorted out right away.  Then maybe we’ll come home for a bit.  He’s scheduled for another procedure on the 25th, so it won’t be a long stay at home, but even a few days at home would be glorious.  Here’s hoping!