The Marek Times

Well, it’s been three days at home now.  And technically, today was the first “regular” day at home.  Merv went to work, and I stayed home with the boys (fortunately, my mom hung out with us most of the day – the routine’s a bit crazy, and I’m not used to it yet).  But so far so good.  We had visits from a few home care nurses this morning and all that seemed to go ok.  The one nurse had to check Marek and he sooooo didn’t like that!  I think he’s getting used to being at home and not being poked at all day.  Poor little guy – but he got back at her, he peed all over her scale when she tried to weigh him.  Good news though, he did grow a little bit over the weekend.

All in all, it’s going pretty well.  We see the pediatrician on Wednesday.  We’ll see what he has to say about all this…

Can you believe it?!?!?!  We’re actually home!!!  Woohooo!!!  After the last of our ‘training’ today, they let us go right away.  We were discharged by about 2:30.  Of course, it took us until 4 to get out of there (you wouldn’t believe how much stuff we’d accumulated there!).  So, by 4:30, we were actually in our own house with our baby boy.  Word must get around quick, because the home care nurses phoned to set up our appointments as we were walking in the door!  It’s a little scary but so exciting and so wonderful.  So far he’s doing great.  He seems to like being here without the constant crying from other kids and no beeping machines.  Ben’s an awesome big brother.  He helps get diapers and supplies when Marek needs them and helps out with whatever he can.  I’m so proud.

Hopefully our first night here is a peaceful, quiet one.  Here’s the latest pics…

Well, for the most part it was a quiet weekend at the hospital.  Marek was stable all weekend – nothing exciting and I’m so glad.  Things were back to normal today though with all the doctors and nurses back after the long weekend.  And, woohoo, Marek was well enough to move today.  He’s no longer on ICE status and has been moved onto the ward.  The move sounds more exciting than it actually was – he really only moved one room over.  But still, there’s WAY more room for us in there and he only has one roomie and it’s another baby.  It was kind of weird having him in with 12 and 14 year olds in the ICE room.  What it does mean though, is that we have to stay there with Marek 24/7.  Merv is going to work during the day and stay there nights and I’ll be there during the day and stay home with Ben at nights.  It’s going to be a little crazy for a while.  But the push is on for us to learn everything about his care so that we can take him home.  I think (and I hope I don’t jynx it here) that they want to send him home with us within about a week or so.  That’s provided that everything goes well.  I’m not counting on it or anything, but it’s nice that we’re working towards taking him home.  yay!

Tomorrow, Merv and I have to take a class all about his injection (what the medicine is and what it does and how to give it and when – all that sort of stuff).  And this is the first night where Merv will stay there with Marek all night.  I hope this schedule isn’t too crazy.  Here’s a couple of his Easter pics…

Just a quick update.  Marek got moved out of NICU today.  He’s now in an intermediate room where they’ll evaluate him to see what level of care he needs.  That means that in the next couple of days (hopefully) he’ll get moved to an actual room on the regular pediatric (cardiology) ward.  It also means that Merv or I will have to stay with him 24/7 because his level of nursing care will go down to prepare us for taking him home.  I can’t believe it.  They’re actually starting to talk about sending him home.  We haven’t even bought a car seat yet!  It’s still a little ways away, since his feeding is an issue, but still, it’s a step in the right direction.  It all depends right now on what will be decided about his digestive system.  He’s a bit backwards on the inside, so it could get really complicated.  Please keep praying for him – he needs to be successful with feeding – he’s so skinny!

Today was definitely an improvement over yesterday.  I even managed to go the whole day without crying.  Marek was pretty much trouble free today.  He slept quietly most of the night, and most of the morning.  This afternoon, his sedation was turned down, so he woke up and was quite responsive.  I love his eyes – they’re so big.  His numbers were great all day and by 5:30 he was ready for extubation.  He tolerated the extubation better than the first time, so hopefully he’ll do ok this time.  I’m praying that he does ok.  About an hour after extubation, I got to hold him.  He was awake for most of that time, although he did fall asleep in my arms for a little bit.  Just as we were leaving for the night, Marek was re-started on his feeds.  I’m still pretty nervous after yesterday, but I’m so much more hopeful.  He did great today.  Here’s the latest pics:

Ok, today sucked.  I think the NICU should have a box near the door as you come in where you can pick up some internal strength if you need it.  At some points today, it seemed like a struggle just to stay upright and breathing.  I really hope Marek has a good night.  Then, hopefully, tomorrow will be a better day.  Here’s the scoop:

At 2 am, Marek threw up.  Not exactly exciting news for a baby, but technically, his milk gets inserted past the stomach, so he really shouldn’t be spitting up.  Then at 2:30 am, Marek had an arhythmia.  His heart rate sped up to 242 beats per minute.  That’s twice as fast as it should be.  They gave him some meds to bring it back down, which thankfully, he responded well to.  At this point, they cut off his feeds.  When we talked to the doctor at about 11:30, Marek seemed to be doing ok, so the plan was still to extubate him in the afternoon.  Fortunately, they didn’t get to it, because at 1:40 pm, Marek had a seizure.  It was pretty weird, because I was right there and I didn’t recognize it as a seizure.  I just thought he was a tiny bit twitchy because they lowered his morphine.  It was a pretty minor seizure, but meant that they had to start a pile of tests to figure out why he had the seizure.  They did a spinal tap to rule out infection, checked his MRI results from yesterday to check for neuro issues and were going to take some blood to check for an electrolite imbalance.

I don’t know the results of the spinal or blood tests, but we do know from the MRI that Marek had a few little strokes.  My heart hurts just thinking about it.  They don’t know when he had the stroke only that he had a 50% chance of having one after surgery, so I guess it’s not really a surprise.  It still sucks though.  At the same time, they were really small strokes, so it could have been worse.  And that probably was the reason for the seizure.  They don’t know what the long term effects of this all will be, but Marek will get a follow up with various experts, including the pediatric stroke doctor.

Our little ray of sunshine today was that both Merv and I got to hold Marek at the end of the day.  Thank goodness.  It felt so nice to have him in my arms.  I wish I could make it all go away for him and make him all better.  I’ve attached some pictures.  Please ignore my red puffy eyes.

I also wanted to post a new picture of Ben.  He’s decided that he wants to be a policeman when he grows up and has been practicing his grouchy face for when he catches bad guys.  He also likes to give his daddy speeding tickets.  Here’s my big little man: