Wednesday, July 27, 2016

Micah's surgery story and recovering...

Where we left off..
Micah had his successful surgery last Friday. Now that we’re done celebrating, we’re getting used to the next phase - which is recovery.

Friday, July 22, Full story on the day of surgery:
This was a wild day. Laura, Dylan and I ended up spending about 14 hours waiting for Micah at the hospital. As you can imagine, we went through a lot of emotions that day. Thankfully, ending the day with hope in our hearts and words of thanks on our tongues.

We got up bright and early (iPad for Dylan? Check. Charging cords? Check.). Got to the hospital at around 7AM to hang out with Micah. We kept him occupied the best we could, considering he was thirsty, hungry and generally upset.

He was the first surgery of the day, so he got sent back just before 8AM.

We talked to Dr. Hanley around 9:15. He sat down and talked through all the various factors and decisions. Dr. Hanley said he would try to get us an update on if he would go for a full repair or just a shunt to the left pulmonary artery.

Side note but important: I know “full repair” is a little misleading of a term if you’re unfamiliar. Full repair means that his heart can structurally function like it’s meant to (it has all the parts, no holes, no workarounds). Kids with these repairs need further surgeries due to the simple fact that the replacement conduits don’t grow with the rest of the heart. Once Micah outgrows his conduits, he’ll need another surgery.

Laura and I reiterated that we trust in his decision, that he certainly has his work cut out for him and that we can’t thank him enough.

We got updates every 2 hours going forward. If you’re familiar with waiting in surgeries or any procedure where your child is knocked out and taken away - you’ll realize that the updates usually come in 3 ways. 1) “everything is fine, things are going well, we’ll update you later on” 2) “the doctor will fill you in later” 3) nothing. The fourth option is that something went wrong - but thankfully we’ve never had that given to us via a phone update.

On the second update, we got the usual..
“things are fine, going to plan, we’ll update you in a couple hours”.
So I said, “Great!... Did Dr. Hanley say which plan?
“...No, I’ll try to get that information for the next update”
On the next update..
“Things are going fine, going to plan, we’ll update you in a couple hours. I tried to get specifics on the plan, but the surgeons didn’t want to relay the details at this point

If you’ve kept up with our blog, you already know how things turned out, but at the time Laura and I figured that this meant either 1) things are going fine - just the usual business of a surgery and no time to communicate it or 2) something unexpected is going on.

We spent the next number of hours updating family, keeping Dylan occupied (he made a friend, which was nice!) and increasingly beginning to wonder if things weren’t going well. The following updates were always good, but as the waiting room slowly emptied, as it got dark outside, after we had our dinner and were completely tired of staring at our phones for nothing else to do - you can’t help but question your faith. The last update came in person. Our updater said he was heading home for the evening and that they should be finishing up in a couple hours.

Finally, around 9:30PM, Dr. Hanley strolls in.
He sits down and said, “So as you know, we did a full repair...”
Laura and I are shocked and excited and say, “WOW! No, we didn’t know! Go on!”
It turned out that Dr. Hanley tried to convey that he was doing a full repair, but it got lost in the communication train.

Once Dr. Hanley made it to Micah’s LPA, he found that it was nearly twice the size that he expected.
  • He was able to bridge the gap to connect the LPA to his main pulmonary branch.
  • He replaced the previous pulmonary conduit.
  • He enlarged the branches of his right pulmonary arteries.
  • He connected a collateral vessel (which wasn’t even seen on the CT or cath images)
  • He closed the VSD and the ASD.
  • He performed the flow study, which showed that his pressures on the right ventricle were 29 (normal is 25!).
  • He closed up his chest.

Dr. Hanley said that Micah’s oxygen saturations would be in the upper 90s! No more oxygen at home! (God willing!)

We were thrilled. It felt like a dream when he was talking to us. We had such deep faith that this day would come. We went from Virginia where “there is nothing we can do” to California where “we completed a full repair”.

We kept thanking Dr. Hanley (and his team), we messaged everyone in our families, we thanked God. Dylan and I went to the RMH and had some celebratory Nutella sandwiches. Laura waited to see Micah off to the CICU.

Saturday through Tuesday, Recovering:

The past few days, Micah’s been intubated and heavily drugged. Overall, he’s doing really well! The next milestone is to extubate him (remove the breathing tube). We’re working on a different timeline of events this go around. We’re used to Micah not extubating in the usual 3-5 days post operation. We’re trusting that the right levels of medication can keep him in the right spot so that he doesn’t move his tube too much, so he can heal and so that his lungs look good. It’s a super delicate balance. A nice aspect is that Laura, Dylan and I are able to catch more breaks and spend some restful evenings together.

Micah’s been moving a lot! One of the doctors one morning said, “everything looks good… so long as we can keep him on the bed!” Of course she was joking, but for some reason (probably his history of hospital stays) he’s been able to tolerate a super high amount of narcotics. At one point, he was on the same level of medication that they use PRE-operation. They’ve put him on and off a paralytic to keep him from moving. But overall, being more active is a good sign, because it shows he is a fighter.

We’re hoping that he will get extubated soon - so we wanted to share a post just pertaining to the surgery and his recovery thus far. And….

Giving thanks!

We are planning to send a handwritten card to Dr. Hanley (and his team) to thank them for the successful surgery. We want to include anyone’s name who has prayed, wished Micah well, or just wants to be on the card! We’re getting a huge list together in the next couple days and then getting it signed by our close family and then delivering it to him ourselves.

We’re going to snag people names of people who comment on our blog and have liked/commented on our facebook posts. If you want your name included on the card, please sign up with your email below and we’ll happily put your name on it!

Add your name and email if you want to be included on the thank you letter.

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