Sunday, November 14, 2004

Try try again

Remember all that stuff about tracheotomies, severe retardation, swallowing reflexes and do-not recussitate orders?

Well, forget it. Never happened. Onward and upward. Keep on keeping on.

That's today's dizzying message from the Neonatal Intensive Care Unit at Beaumont Hospital. Confusing as it is, we'll take it.

Confirming once again that you shouldn't trust what happens on weekends at hospitals, we met today with Beaumont's chief of neonatalogy. His basic message: Will is doing better than two weeks ago, suffered a setback but is slowly moving in the right direction. There's no more reason than ever to think he's retarded, lacks a swallowing reflex or will ever need a tracheotomy. That's not to say any of those things won't ever happen, just that nothing that's occurred lately makes them more likely in the future.

They're still not sure why Will stopped breathing, but it's possible supplements mixed in with mother's milk may have caused him to spit up mucus and other stuff. Speculation that Will lacks a swallowing reflex is grossly premature. It's clear Will is able to swallow somewhat. He lasted a week on the C-PAP before having any trouble. The problem is he seems to do great for a while, then hit a wall and go bad in a hurry.

The plan, such as it is, is to give Will a break for about a week on the ventilator, then try again. That's about all they can do. The equipment may be better and the medicine is certainly more expensive, but in the end, so much of this stuff boils down to trial and error and try, try again.

It's been a crazy few days. We've learned it's probably not a good idea to ask too many questions to rounding physicians who aren't intimately familiar with Will's history.

But today, we needed a break and got one. Will had a great day. He was wide-eyed and alert for the first time in a few days. The only shame is that Will's grandmother flew in from Maine, then left before the rebound. I held him for about an hour, read Shel Silverstein poems and debated with Will the comparative merits of peanut-butter cookies vs. chocolate chips.

The answer, of course: Peanut butter. Hands down.


Blogger TigerJen said...

I hope your son is doing well after his ordeal. My husband is a cardiopulmonologist with a specialization in neonates, and some of the incidences that he told me about are heart breaking.

8:10 PM  
Anonymous Anonymous said...

No, no, it's chocolate chip! No question! (Or maybe peanut butter with chocolate chips!

So glad we have a new perspective on things. And how wonderful to see those gorgeous eyes! Keep on trucking, Will (and Mom and Dad) -- we'll get there!

6:27 AM  
Anonymous Anonymous said...

Will is definately the most adorable three pounder on the Web. Joel and Mo, you two are so strong. We are so glad to hear he is doing better. He looks adorable in his latest picture, he really looks like you Joel.
Peter and Elizabeth

7:24 AM  
Anonymous Anonymous said...

Hi Mo and Joel,
What a gift your beautiful son is and how terrible for all of you to be going through this. Nothing prepares you for this roller coaster ride and sometime you just have to put your hands up, close your eyes and scream.
Keep doing what your doing and celebrate the those great steps forward. Onward and upward! :^)

8:33 AM  
Anonymous Anonymous said...

Okay, I'll weigh in on the debate. Peanut Butter Kisses are the bomb! (You know, pb cookies with the Hershey's kiss in the middle. The best of both worlds.)

One day, Will, you & I will sit down with a plate of them and a big old glass of milk. You'll see I'm right. Until then, keep on chugging, baby. Love ya.

8:49 AM  
Anonymous Anonymous said...

Keep on keeping on. We are praying for Will every day. Warm chocolate chip with milk gets my vote. Love to all 3 of you, Mike, Jamie & Connor

10:50 AM  
Anonymous Anonymous said...

Ok here is the real deal! Yucky cookies.
I was going to bake cookies with my grandson Anthony and asked what kind to make chocolate chip or peanut butter and he said chocolate chip. After I baked them he changed his mind "peanut butter Nana " but too late so we got a jar of extra crunchy peanut butter out and spread it on chocolate chip cookies.......its our fave now.
Briana my grandaughter said those are yucky so now Anthony (three) says "Nana lets make some yucky cookies"
I'm sure Will would love our yucky cookies.
Was so so good to hear he is doing better.
Kathy Greco

12:26 PM  

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