Hang on

It’s going to be a bumpy ride.

And it has been.

We hit another bump last night – like a mountain – that we ran head first in.

After such a great day – a surgery that went smoothly, an uneventful day, we went into the night with positive feelings.

Craig left to go to the hotel around 8pm to get some sleep.  I wanted to stay until midnight so I could pump and spend more time with Evan.

I closed my eyes at 9pm – my last words to our night nurse – “He’s stable, right?  I’m going to sleep for a couple of hours before I have to pump.”

I laid down on the couch in Evan’s room in the ICU…

An hour later….

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“He’s dessatting. His oxygen levels started to decline and now they’re in the 50s.”

“Ok – let’s add some volume.”

“How are his pulses?”

“His heart rate is low.”

“His blood pressure is low, too.” 

“I can’t hear the murmur where the shunt should be.”

“Give him a bolus of heparin – the shunt may have clotted.”

I open my eyes.  My contacts had dried on my eyeballs so it was hard to visualize what was happening.  I rubbed my eyes – trying to get moisture to them so I could see his monitor.

I look up – still half asleep – and see about 10 people working over and around Evan.

Alarms are beeping.  Nurses are running around.  Blood is being drawn.  Doctors are barking orders.

What was happening?  Only an hour had passed.

I sat up quickly.  I stood up trying to get a better look at the show that was before me – the scariest show on earth.

Everything had dropped – Evan’s numbers weren’t looking right.

Another bag of blood was being hung – yet another transfusion.

I walk over to the nurse practitioner and ICU doctors and asked, “What’s happening?”

So much of what they said was a blur.  Bottom line – his oxygen dropped, he needed more oxygen therapy, his oxygen saturations were lower than normal, they couldn’t hear the place on his chest where the shunt should be, they needed to increase his blood pressure, increase his heart rate.

Everything was going wrong.

I called Craig, “Honey – something’s wrong.  They think the shunt clotted and is closed.  I need you here.”

X-ray tech walked in and I was asked to step out of the room.

I lost it.  How could I leave Evan when he was so critical?  What if he felt my absence?  What if I stepped out of the room and he crashed?

I sobbed outside his room.  Looking helplessly on as they continued to work on him.

A  nurse walked over to me, linked her arms in mine and asked if I needed her to call someone.

“My husband is on his way.  He’s 5 minutes away.”

“Then, I’ll wait here and stand with you until he gets here.”

I cried.  I didn’t know what to do. What seemed like an eternity but only a few minutes – I was finally allowed to go back in the room.

Evan’s numbers were back up but not where he was an hour before.  I cried as I held his little hand.  Begging him to fight.

I look up and I see Craig. 

“I don’t know what happened. He was fine an hour ago.”

Craig patted my back and gave my shoulder a squeeze and asked someone to tell him what happened.

“His oxygen levels dropped back to where they were before he had the shunt put in.  We are increasing his blood pressure to get more blood flow to his heart.  We are pacing his heart to increase his heart rate.  We’ve called the cardiologist to get an ECHO to see if the shunt is open.”

Oh my God.  What if the shunt was closed?  What now?

Craig and I sat on the couch and watched the show continue.

Tinkering with meds, x-rays, blood draws…

The ECHO tech and cardiologist came in to get pictures of his heart and check if the shunt was open.

After over an hour the cardiologist came over to us and said, “I can’t see the shunt.  It may or may not be open – but based on what I see – I don’t see it.”

The CICU doctor came over to us and said they had called the catheter team so they could get a definitive answer if the shunt was open.

Another catheter…another procedure…less than 12 hours since his heart surgery.

I sent Craig to the hotel since there was only one couch – thinking they would do the catheter sometime later in the morning.

I laid my head down at 2:30 AM – at 4:00 AM the doctor woke me up…the cath team was here…

The catheter doctors told us this was now emergent.  If the shunt was closed they hoped there would be a little bit of room to get a wire in to put a stent.  It would mean they could dislodge clots if it was blocked – which could lead to a clot blocking important arteries in the lungs..which would mean he would have to go on a machine called ECMO (similar to a bypass machine) that would be his heart and lungs until the surgeon could go in and find the clot.

I was speechless.  I told them I wasn’t signing any consents until all the risks and the procedure were explained to my husband.  I couldn’t make the decision alone.

Craig rushed back to the hospital.  The doctors told him the risks.  I stood at the crib, holding Evan’s hand, telling him over and over how sorry I was he was going through all of this.

Craig signed the consent and told the doctor, “We have no choice.  Let’s just get going.”

Within minutes we were being wheeled out of the CICU and back to the catheter lab. 

Another kiss goodbye and good luck.  Another moment watching our son – now so very sick – being taken away from us to find a way to save his life.

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An hour an half later the interventionalist catheter doctor came in.

“That was much easier than expected.  The shunt is wide open.  There is a small spot where a clot may have been but we’re not sure.  But, we saw what needed, the shunt is open.”

A sigh of relief.  Not really…now the doctors don’t know why Evan had the bad episode.  And now we’re not sure if he’ll have another one….

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Evan is finally stable.  They are slowly weaning meds from his hefty regimen.

I can’t look to the next hour with hope.  Craig and I learned that the hard way.  We don’t take any moment for granted.

I’m scared to feel hope and joy….even in the smallest of victories…

I’m scared to feel fear…not wanting those fears to become reality.

I’m not sure how to feel in this dark place I’m in.  I’m straining to see a light of hope even though he’s stable now.  And I pray that he’ll stay that way and his recovery will continue uneventful.

I’m just scared over everything and just trying to hang on…

Comments

  1. kathy tyroch says:

    Keeping your little Evan and you and Craig in our prayers, Czarina! God has blessed you and we pray he gives you strength and guidance. God bless the hands of the Doctors and staff to give Evan the best care.

  2. I am so sorry you all are going through this with Evan. This heart journey takes so many turns and it is scary and hard to not fear everything. They will get him stabilized and then you will breathe a sigh of relief. Many prayers for all of you.

  3. Elizabeth says:

    Buddy I want so bad to snap my fingers and make this better for you. You know I’m praying but I want to do more. I want to hug you. I want to make you smile. I want to offer some sort of comfort. I want to say something profound that makes you feel better. I’m here whenever you need anything all you have to do is ask.

  4. I got chills reading this. The life of a heart parent is filled with so many rollercoaster rides. It eventually gets better and less bumpy, but those first few drops on the rollercoaster are so scary. Know that Evan is a fighter and so, so many people are praying for him. God will give him strength.

  5. Megan Kestet says:

    Dear Lord,
    Please wrap your comforting arms around these parents as you tend to the needs of this precious little one.