At this point, Laura and I (and Dylan, I'm sure) feel we've done all we can. Now it's out of our hands.
Micah is doing well today and he's in the best position that he can be, given all that he's gone through. He's going for surgery sometime tomorrow morning. Sometime around 7:20 AM is when things really get going. He will probably be taken back for anesthesia well before that. Laura signed the consent form this morning.
Where we last left off...
To catch you up from Monday's blog post (following Sunday night's craziness). That was truly the peak of our frustrations. Monday itself was mostly a day of calming Micah (and ourselves) down. We really loved all the responses on our blog and got a lot of great advice from other parents, especially in our facebook groups MAPCAs Momas and Papas and Heart or Kidney Parents of LPCH.
On Monday night, Dr. Hanley replied to our email. We haven't had one interaction with Hanley that was anything less than great. He said the surgery would NOT be postponed for 2 weeks and that it would likely be this week.
Tuesday, July 19:
Laura spent the morning and afternoon with Micah and handled a lot of the follow up questions and conversations with nurses.
One key point is that we obtained the exact timeline of medications given from Sunday night to Monday. It turned out that Micah received more than just Tylenol PRNs, he also received two Morphine PRNs. Even though this still wasn't enough medication for Micah (as was evident by all the activity on Monday), he at least wasn't grossly under medicated.
I requested a follow up meeting with our social worker and the attending CICU doctor (Dr. Reddy). We had a great conversation with her for nearly an hour. She was able to explain everything from her perspective, talk about Micah's longer term care and all the nuanced complications that are involved. She was also very receptive of our concerns, so we detailed out some of our suggestions for how the ICU system can be improved to help reduce the likelihood of issues like ours coming up again. While in the meeting, I got a call from Dr. Hanley's assistant saying that Micah's surgery would be scheduled for Friday.
Micah was doing much better today, still a little shaky, but he was even standing in his bed and moving about! (He's a spunky dude) Micah's had fevers on and off for a few days. They're trying to rule out if it's caused by an infection (and not just inflammation).
Wednesday, July 20:
Laura got a call at 6 AM saying that Micah might go to surgery TODAY.
Naturally, I rushed into the hospital. It turned out that Micah was unable to have surgery because his feeds were only stopped at 6 AM, and he needs to be without feeds for 6 hours - which doesn't give enough time for Dr. Hanley to do the complex surgery. At rounds in the morning, the team explained how they're mostly concerned that Micah has an infection, which is causing his intermittent fevers. One doctor explained that "this is not science" and that they have to use systematic guesswork to identify what may or may not be causing an infection and then administer the corresponding specific antibiotics.
On my way to get coffee, Dr. Hanley was passing by in the halls. I stopped him to say hello and he said he would be willing to meet and talk about Micah - right then. We went to Micah's bedside, so he could meet Micah and see how he is doing. We had a great conversation about the details of the surgery (which are outlined in our last blog post) and about how Micah has a nuanced and complex medical condition.
The key info: Dr. Hanley has a very early, game-time decision.
Option 1: Shunt the ghost vessels (Left pulmonary artery vessels that are connected to his left lung).
Option 2: Connect the ghost vessels to the main pulmonary trunk.
If he needs to choose option 1. That's the end of the surgery.
If he can choose option 2, then he does the rest of it. He will fix the right side and close his fenestrated VSD.
Everything that's happened to Micah since coming to LPCH weighs into his decision making.
The rest of the day, Micah's been pretty upsettable - though he has enjoyed playing, reading and watching movies. He keeps cycling through many of his little ASL signs... water, dad, mom, lets go, dylan, grandma, book, pick me up, all done... It's still super difficult as a parent, but it's just the way it is now. Hospital life is totally difficult, things can be steady and OK in a day and your nurse might still break out in tears at the end of her shift. (We love our nurse for the past few days, she's very sweet).
Thursday, July 21:
Laura's been with Micah today. He's more himself - like yesterday and the day before. He hasn't had a fever today, which is good. When Laura signed the consent papers, it had a specific call out for ECMO (life support). For a heart surgery, it's unusual to call out the risk for ECMO specifically. Scary to think about and it definitely brings flash backs to when Micah was on it for a number of days.
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