The Marek Times

Still no real news.  Marek is still in the PICU, still intubated (on the breathing machine), still on nitric oxide (NO) and still on tons of sedation.  They tried to wean him off the NO today for the third time (the first time is when his heart stopped) and again it wasn’t successful.  They really thought it would work this time, but I guess he still needs it a bit.  He has taken some tiny steps forward – he can override the breathing machine now and do some of the work on his own and he’s on slightly less sedation than before.  His sats don’t drop as often, go as low, or stay down as long.  They think he’s finally getting over his cold.

There may be something else though.  Because of his shunt and the way things have gone operatively for Marek, we know he has more blood flow to his left lung than to his right.  (His pulmonary arteries are of different sizes).  That may mean that he’s not able to use his lungs equally.  They are planning to do a pulmonary perfusion scan to see how much blood flow is going to each lung.  I don’t know what they will do with that information yet.  I suppose if he’s using one lung 90% and the other only 10% then they will have to go in and do something about the undersized artery.  But if they are more equal, then I don’t know.  Once they have the scan done, the PICU doctors, the cardiologists and the surgeons will get together and try to figure out what to do about it.  The scan hasn’t been scheduled yet, but I’m really hoping it’s this week.

I wish I could do something.  I’m angry, I’m frustrated, I’m impatient and I’m tired.  I miss my little boy.  I wish I could hold him…  kiss him and make it all better.  And I wish someone could kiss me and make it all better…

Not much is new.  They’re trying really hard to keep Marek stable, but he’s being a bit of a trouble maker.  He de-sats occasionally and just doesn’t seem to be improving just yet.  He’s not getting worse, which is good, I just wish I could see some improvement.  Some sort of sign that he’s getting better.  They keep telling me to be patient but it’s so hard.  I can hardly even touch him because it wakes him up and his sats drop.  I miss him so much.  I wish I could hold him and give him kisses.

On Monday they are planning to take him for a pulmonary perfusion scan.  They want to see how his blood flow is in his lungs.  I hope it’s good news – I’m scared of what they will find.  I think they are worried that there are issues there.  Please pray for my little man.

Marek is still stable.  I don’t have any news, I just thought I’d post a couple of pictures.  The first two pictures are from just before Marek got sick.  The last one is Marek this morning.  The fancy beret he’s wearing is actually a gel pack.  I’m not sure if he has a headache, but the gel pack seemed to make him feel better.  And Peachy – don’t worry about his nose.  I’m trying my best to fix it…

Marek went for his CT scan today.  He tolerated the procedure well enough.  The results are that he does in fact have a pocket of fluid near his shunt – called a seroma.  His cardiologist doesn’t think it’s what’s causing him to be so sick, but she will discuss it with the other doctors tomorrow.  We should get more information then and hopefully they’ll come up with a plan of action.  I don’t know if they will open him up to get rid of it just yet – his doc doesn’t want another surgery and honestly, neither do I. 

His cold seems to be slowly getting better.  He’s still fighting the sedation somewhat and still de-sats when he wakes, but seems more stable overall.  Hopefully tomorrow we see more improvement.

Not much is new.  Marek is still quite unstable although today was a tiny bit better.  They wanted to send him for a CT scan but when they tried to take him yesterday his heart rate started to drop, so they decided against it.  They will try again on Monday after a couple of days of rest.  They are going to try not to disturb him too much.  I think he really needs to get some rest.

The CT scan is for something new.  They discovered as they looked back at all his xrays and stuff that he has a pocket of fluid growing near his shunt.  They want the CT scan to confirm what they see.  There’s a chance that this little pocket is what’s making him so unstable all the time.  I guess they’re thinking that a cold shouldn’t make him this sick.  Hopefully we’ll find out more in the next few days.

Thanks to everyone who is praying for us.

It was not a good day.  Actually, I should count it as a good day – he has recovered for now and they are able to manage him, but it was a very hard day.  This afternoon, Marek’s heart basically stopped.  They tried to wean him off the NO, but about 20 minutes after they turned it off, his heart rate starting dropping and fast.  His blood pressure was very low and his heart rate just kept dropping.  They had to do CPR for about 4 minutes, they turned the NO back on and gave him a few more drugs, but he recovered.  The explanation is basically that without the NO, the pressure in his lungs was too high for his heart to pump blood into, so it tired out.

I was there when it happened – feeling totally helpless.  There was nothing I could do.  I feel so numb now and so tired.  I don’t know how long I can keep doing this.  I just want my baby back.  I don’t want to lose him.  Please, please pray for my baby.

Things are not good.  Marek is back in the PICU.  He woke up very cranky and just wasn’t settling yesterday.  He got worse and worse over the day.  We called his cardiologist in the afternoon and she said that if his sats don’t get better over the next couple of hours, take him into the ER.  That’s exactly what we did.  Unfortunately, once we got there, they poked and prodded him which just made him more angry and he got way worse in a hurry.  By midnight he’d been moved to the PICU.  His breathing became so laboured that they were very concerned that he would be too tired to keep going and he would just stop breathing, so they had to intubate him.  It was a long night for us.

He is more stable today, but they are having trouble keeping him sedated.  His body is quite accustomed to the drugs, so it’s taking high levels and a combination of drugs to keep him calm.  It’s so hard to see him that way. 

God – I don’t know if you read blogs, but if you do read this – please heal my baby.  He’s so very sick.  And please give me the strength I need to see him through this.

We’re home!  They sent us home today.  Marek is still congested, but is otherwise doing fine.  I hope that we can manage to stay home a little longer this time.  Our record since July 3 is 10 days at home.

The other good news is that Marek was 12 lbs today on their scale.  I’m not sure what he’ll be on our scale tomorrow, but hopefully it’s close.  Well, I’m off to bed.  It’s so nice to have the whole family home.

We’re still in the hospital.  I really hate weekends in the hospital.  There’s hardly anyone there so nothing really happens.  Hopefully there will be a little more action this week.  Or at least someone will tell us how long we have to stay there.  Marek is continuing to improve.  He definitely has a cold – with all the usual symptoms now, cough and runny nose.  It makes it really hard for him to eat, so they use a tiny little vacuum thing to suction out his nose.  As you can imagine, he’s not a fan.  But as much as he hates it, it really works to relieve his congestion.  He actually ate more than he has in ages today – all by bottle.  That’s a good sign that he’s feeling better.  His sats are mostly in the high 70’s/low 80″s now and the oxygen is way down.  He even spent an hour or so with no oxygen blowing up his nose.  But he does need a little bit most of the time.

Here’s praying that we go home soon.

I now know we’ve definitely been in the hospital too much this summer.  I went to the parking office today to get a pass and the lady there remembered me and even remembered which lot I park in.  Sad isn’t it?

Marek is still there obviously.  And given the fact that they gave me a parking pass that’s good for a week, I guess we’re unlikely to go home for the weekend.  I guess I should be happy they haven’t given me a monthly pass. 

Marek actually seemed a bit better to me today.  He’s still having incredibly blue spells, but he rested better today and was a little less cranky.  They gave him some steroids to open up his airway and lungs and that did seem to help a bit.  It’s actually kind of entertaining to watch the new nurses freak out when they see Marek and see how blue he is and how low his sats are.  They always want to turn up his oxygen and I always say “you can try, but it won’t do anything”.  And sure enough, it doesn’t do anything.  They seem to think it’s strange that my baby is incredibly blue but I’m not panicky about it.  What they don’t realize is how often Marek does this and that it does bother me, but we’re doing everything we can and unfortunately it’s part of our “normal”.

Anyway, he does seem to be getting better, so hopefully we’re on the road to recovery.  Ben is definitely feeling better, he’s just tired now.  And he’s totally loving school, so that’s great.  Merv and I are taking alternate shifts at the hospital.  I’m doing day shift while he goes to work and he’s doing night shift while I take Benny home.  I think we’re both slowly going crazy…  I think we’re just feeling a bit overwhelmed and overtired.  I just want my whole family sleeping under one roof again.