Keeping Busy

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We knew that at some point they would have to change out Jack’s ECMO machine and switch it with another. Thursday morning we got the call that they would be doing it that day. The last time they had to make a change on his circuit (there was a clot so they had to change what is called the “bladder”) he didn’t tolerate it well. And then there was the “accident” with that same part of the circuit coming undone later that day…which he tolerated EVEN WORSE. This time, however, they were optimistic that he would handle it very well. So Adam, Megan, and I set up camp in the lobby to wait for the “one minute or less” procedure. Forty five minutes later, Adam went in to see if they were done, and they hadn’t started yet…so then fifteen minutes later they came out and told us he did great and it went “super slick”.

Whew.

Jack’s best friend Nicholas had to undergo the same thing a few hours later. He also handled it like a champ.

That night after getting Megan into bed, I went back to the hospital by myself. I learned that one of the parts on the new ECMO machine had a CRACK in it – and was “patched up” but still leaking “a little”. I talked to the nurse about it and she said “they” were not “concerned”. I said, “oh, okay” and promptly hunted down Jack’s doctor. We had a long talk about it: including some boldness on my part (which is uncharacteristic), but he reassured me that it wasn’t a big deal and they would watch it but did not anticipate any problems. I reminded him about the incident with the tubing coming undone, and he recognized my concern, but then reassured me. I left feeling just okay about it.

We called later that night and found out that they ended up changing the part within an hour after I had left.

I still haven’t had a chance to talk to anyone who was there at the time (the doctor that night is gone until Christmas Eve) so I am not sure of the motivation or series of events. They said it took 15 seconds to change and Jack handled it just fine. We do wish they would have called to tell us. Some nurses get that we want phone calls, some don’t.

Then last night we got a call saying that his neck was “leaking” where the tubing for the ECMO machine enters his body. As of this morning, it was all fixed (through platelets/clotting agents and gauze). That small little hiccup didn’t cause any problems.

X-rays of Jack’s lungs show that they are doing great. He is even doing some breathing on his own.

His heart is about the same. Improvement is ideal, but stability is okay at this point.

He is still seizing, but they are pretty sure that the seizures are causing him no harm.

Another ultrasound of the head shows no bleeding.

So we are still just waiting and waiting. I think that’s the story of our life at this point. That’s okay with us. We’ve got time. Plenty of time.

I’ve mentioned before that Jack doesn’t like to follow any of the “textbook” issues as far as what he’s going through and that one doctor even called him a “head scratcher”. Today a nurse mentioned to me that several things about Jack’s ECMO experience have been “unconventional” and another nurse AND one of the doctors said something to Adam today about Jack throwing constant curveballs and throwing everyone for a loop. I am pretty sure that Adam and I are plain-old-regular-boring people, so I am not sure why our little boy feels like he needs to stir up things so much.

We sure love him – despite his knack for getting into trouble!

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5 responses »

  1. Wow! Good for you for being bold with the doctor. Not even the best doctor can care about your son the way you do. It is only appropriate for you to make sure that they are doing EVERYTHING they can to ensure Jack the best care possible. Continual prayers are being offered up for your family!

  2. Thanks for the updates. This is your son and of course you would oversee his medical care. It may be more convenient for the doctors if you aren’t as involved, but I think as long as you show them some respect it’s best if you all work together. So, your saying my nephew is a little trouble maker, huh? 🙂

  3. I’m glad to hear Jack is handling all the switches well. It is crazy how many little things can either help him or hurt him at tis point, and there is no reason you wouldn’t be concerned about them, and let the doctors know. You are just doing your part as little Jacks mom. Thank you for updating us all, Every time I hear good news from your blog, I smile, and say a little prayer that things continue to be positive.

  4. You are a great mother. Doctors don’t have a mother’s instinct and I thought you did a great job confronting the dr. and letting him know your concerns. Your little guy is a trooper. I’m glad he’s doing as well as he can be at this moment.We are still pray for him and your family.

  5. I haven’t been able to use the internet for three weeks and I have been so worried about your guys. I am glad Jack is doing better. We miss you!

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