The Marek Times

Today was not a good day.  Marek hardly ate anything at all during the night and this morning, despite being hungry and waking every half hour – hour.  I called cardiology and they recommended that I either see the pediatrician again today (we saw him yesterday) or go to emergency.  Well, we couldn’t see him again today, so off to ER we went.  Which turned out to be good.  They did a chest x-ray which showed tons of fluid on his left and none on his right.  He was going into heart failure again.  At first they thought his pulmonary veins had re-obstructed, but after two echocardiograms, they now think that he has a clot at the end of his shunt where it connects with the right pulmonary artery.  They are hopeful that they can fix the problem.  It was really hard to leave Marek there tonight though.  He’s back in the PICU and they were intubating him as we left.  That’s a total bummer, but he was working so hard to breathe, so I’m glad he going to get help.  And Merv and I had almost no sleep last night, so hopefully we’ll catch a few z’s before things go crazy again tomorrow.  Stay tuned.

Ug!  I think they gave me the wrong baby when I left the hospital.  Mine was happy, slept through the night and was a good eater when he went into the hospital.  This new Marek seems to want to eat more during the night than during the day and he’s teething to boot, so he’s grouchy.  and drooley.  so, so drooley.

On the plus side, he’s growing again.  He weighed in at 11 lbs, 13 oz. – that’s 6 oz more than when he left the hospital 6 days ago, so that’s good.  This visit from the nurse was WAY better than before the surgery.  His sats were 80 (we always struggled to get above 70 before) and his heart rate and resperatory rate where much more reasonable.  Yay!  a good visit.  She was so happy to see him all pinkish.  Much better than the blue he was the last time she saw him.  Hopefully, the pediatrican appointment on Wednesday will go just as well.  I’m still waiting to hear from the dietician regarding his eating and the nose tube.  I would like to get rid of the tube, since he is gaining well, but he didn’t eat all that well today, so I’m a bit nervous.  I think it’s the teething though.  It’s hard to eat properly when you’re chewing on your fist and fingers all day.

Marek is 5 months old today.  He’s so tiny for a 5 month old, but he’s doing great.  His schedule is still totally messed up from being in the hospital.  I hope he remembers how to sleep through the night soon.  Right now, it’s like having a newborn all over again.  He wants to eat every couple of hours, it seems, including through the night.  Bah!!!  We’re sooo tired!  He does seem to be settling somewhat though, so hopefully the long nights will be over soon.  At least he’s napping again.  For the first two days at home, he wouldn’t sleep for more than 15 or 20 minutes and only did it a few times.  That makes for a really long day!  He just kind of seemed totally overwhelmed and excited to be home again.

Tomorrow we see the home care nurse and hopefully Marek will be gaining weight again.  He didn’t gain anything the entire 3 weeks he was in the hospital.  If he’s gaining well, then hopefully the nose tube can come out.  We’re not really using it anyway – just to top him up if he doesn’t eat enough on his own.  Then on Wednesday we see the pediatrician for his missed 4 month check-up, as well as the chest tube suture removal.  It always amazes me how quickly these little guys heal.  His scar looks almost exactly the way it did before the second surgery already.

Here’s my little man, chillin’ with daddy, watchin’ TV.  I’m almost positive he’s thinking “all these channels and there’s nothing on”.

Can you believe it?  We’re home!  They sent us home this morning (although it took until 2:30 to actually get out of there).  Yay!!  Marek has less medications than he did before the surgery and still has a feeding tube in his nose, but that should come out in a day or two as soon as he eats as much as he’s supposed to in a day.  I just can’t believe that we’re home only 8 days after his surgery.  Here we are…

Yesterday was definitely not Marek’s best day.  He had diarrhea in the morning and so they put him in isolation (which means in a room by himself where we have to wear masks and gowns to visit him) just in case it was a viral infection.  Marek was just miserable, but it turns out it wasn’t viral after all – they’re thinking it was withdrawls from the morphine. 

This morning we were “de-isolated” and we got the go-ahead to bottle feed again.  I can’t believe how happy Marek was getting his bottle again.  He was smiling and drinking at the same time.  In fact, he was smiley and laughing all day.  They also told us that if he eats well and gets off the morphine for good, we should be able to go home this week.  Isn’t that awesome?!  And to top it all off, they said we don’t need to give him injections anymore.  They’re switching his blood thinner to aspirin.  Yay!!!!

Here he is today – he finally got to wear pyjamas again.  It’s not the best picture (from my cell phone) but he definitely looks so much better than he did before his surgery.

Marek is out of the PICU!!  He’s been moved to the ICE room (an intermediate care room) to transition him to the ward.  That is totally awesome.  He’s also starting to eat more so hopefully he’ll start to put on some weight again.  He did lose some weight, but he doesn’t look too bad.  I’m sure his double chin will come back.  He’s still in some pain, especially when he gets moved around or he has to cough, then his chest really hurts, which just breaks my heart.  He’s so tough though he hardly cries.  At one point today, he didn’t make a sound, but a tear dripped down.  That was probably the hardest for me.  Made me want to cry.  They’re starting to recognize when to give him something for the pain, so that’s helping.

Every day he’s getting a little better.  I’m so proud of my little man!

Today Marek was weaned off a few more meds and transferred back to the meds he took at home before his surgery.  He’s waking more and more, though he’s still REALLY groggy.  He’s also a whole lot less puffy, in fact, they may have actually taken too much fluid off.  He’s kind of on the dry side now, but they’ve started his food again (through the nose tube – blech!) so he should be about right tomorrow.

To answer the question about why his diaper looks so big – it’s because it is.  They only have size 1s and size 3s and he’s a size 2.  I don’t know why they only have odd sizes.  It’s odd.  Anyway, little by little, he’s getting better.  Hopefully soon, he’ll move back to the ward and get out of intensive care.  Fingers crossed everyone!

A little bit of excitement today.  First, they removed his chest tube this morning.  That’s great because those things are really painful if they wiggle around.  Then at 10:30, they extubated him.  Yay!  No more breathing machine.  And so far, he’s tolerating it well.  I hope I haven’t jynxed it by saying so.  They also turned off his morphine today.  He’s still really groggy this evening as it wears off, but he’s becoming more and more awake.  They also tried to wean him off one of his heart drugs and his oxygen, but they had to turn those back on because it turns out he has a collapsed lung which is giving him a bit of trouble.  Not too bad though.  Hopefully tomorrow will be better on that front.  All in all today, we moved forward.  Here he is post-extubation:

Not much to report.  Marek is doing well in the PICU.  They are slowly weaning him off the oxygen and trying to keep him sleepy.  He’s quite the fighter and is trying to wake up.  It’s good – it means he’s strong and wants to get better.  Eventually, they’ll start weaning him off the sleepy meds as well, but he still needs to rest and heal up.  He’s peeing out a lot of the fluid that he was retaining and already he’s starting to look like himself again.  While he’s asleep his sats are very stable – in the 80’s.

It’s been 24 hours now since he came out of surgery.  He’s been mostly stable although his sats did dip a couple of times, but I’m told that’s to be expected.  All in all, he’s doing ok so far.  He mostly just rested today.  He woke up briefly once, but they increased his sedative to keep him calm, which I was grateful for.  We’ll see what tomorrow brings.  Merv and I are exhausted.  The whole thing is catching up with us.  I will definitely turn in early and try to get more sleep.

I took a couple of pictures of Marek this afternoon.  He’s definitely MUCH less blue.