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Pulmonary Hypertensive Crisis, again: July 16, 2012

July 17, 2012

Getting a phone call about a pulmonary hypertensive crisis sucked. Watching one was worse. Today started off just fine, with plans to slowly wean Oliver over to the conventional ventilator again today. His RT today had even wheeled it in everyone was so confident it would happen. Then all of a sudden it wasn’t.

My Dad came to hang out with Oliver and I went downstairs to see some friends who had come to visit. I was enjoying myself while knowing he was being loved by my dad when he started sending me text messages that weren’t super reassuring. “They’re fussing over him” (strong words for my Dad), “might do an x-ray”, “doing an x-ray”. Ok, something is not good. Luckily the friend I was with was Dr. Erin, who lives in Calgary but is here for a week for three weddings. She is currently doing her PICU rotation in her pediatric residency at Calgary Children’s. She was exactly the person I needed at my side watching this and God sent her to me at exactly the right moment.

We walked in and there were at least 15 people around him. He was mottled and blueish and a lot of scary words were being thrown around, a lot of drugs being prepared. To be honest it’s all a bit of a blur. Erin was amazing, providing a running commentary of what was happening and helping me to stay calm as they gave him bicarb to stop his heart from going in to failure, as they wheeled in the nitric oxide to put him back on it, as they restarted the norepinephrine. She told me what was happening as Dr. Mema threaded a camera down his breathing tube, cutting off his air supply to see what was going on down there (turns out this was a brilliant move). She eavesdropped closely while they did an echo pre and post nitric. I texted Tim furiously and my Dad went to get him and took over playing with Poppy so we could be together. Erin stuck around to explain to Tim what had happened way better than I ever could have. It was hard but I know it was great. Having Erin there was amazing, having my Dad so close and able to run to Poppy was amazing, having a husband who is such a fabulous father to my kids was amazing. Watching so many people work so furiously to keep my baby safe was really, truly, incredibly amazing.

It turns out his tube was the problem again, but in the moment they treated for everything because while they were trying to figure out what was going on it was safest. And I love that. I am so grateful they saved my baby. Again. Because his anatomy is a little funky, things that should work don’t. So when he’s anywhere but his left, his airway gets a bit kinked. And the kink is apparently blocking the end of his breathing tube. So they turn the settings up but it doesn’t help, because the air isn’t getting in to his lungs. In fact, because of the large leak around his tube, it goes in to his stomach. And with his stomach being in his chest, it gets blown up and presses on the lung and heart, making the situation worse. They’ve turned up the suction on his stomach, moved the tube in past the kink, and are going to monitor him even more closely (I didn’t even think that was possible!). They’re weaning the norepinephrine off tonight and have the nitric down to 10. On the echo the nitric seemed to make no difference, but they’re waiting for the final report from cardio before they wean him completely. They’re keeping him muscle relaxed for the time being until they’re confident they’re in complete control. The doctors are happy he recovered so quickly and that his heart didn’t seem to be affected by any of this. So he’s pretty much back in the neighborhood of where we started the day. But oh what a day it was.

Oliver sure finds a way to get his point across, throwing himself in to crisis so someone will discover his kinked airway! But I’m glad it’s been found, and as Dr. Erin says “It’s a tube problem, not an Oliver problem!”. So we go to bed praying for a quiet night tonight and a quiet day tomorrow. But also knowing when a day isn’t so quiet they usually learn something about him from it, so we’ve just got to keep riding the roller coaster. We’re scared. Xo

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Our day started off lovely, with eye contact and hand holding.

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Then it got frantic.

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He was so angry he gave himself a fever.

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But he recovered nicely and we went back to marveling at his gigantic feet.

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3 Comments
  1. Reading your updates everyday and continuing to pray for complete healing of your beautiful Oliver. Thank you for sharing the journey of your sweet boy. I know God has great and wonderful plans for Oliver.

  2. Whew! I tell you some of these little boys like to scare the pants off their mom and dad. I am so glad he is okay and I am hoping for a very quiet and boring day.

    Anu
    http://ourcdhherolittlea.wordpress.com/

  3. Alex, your ability to see the “amazing” in the midst of the “terrifying” is, well… amazing. I remember the helplessness of standing back watching all those people work on my baby. I started asking if they could prepare a Ketamine bolus for ME! 🙂 I’m so glad they discovered the problem and that they are on top of it. Go Oliver Go! Hang in there, Oliver’s family.
    Corinne
    Mama to Samuel, lcdh, Feb1/11
    http://www.samuelslight.blogspot.com

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