A Little Something Extra

Wednesday, October 1, 2008

31 for 21 begins

Seems like a perfect time to have committed to updating the blog every day. I'm certainly not at a loss for what to share. It's condensing it into readable form that creates the problem.

Today the 3-ring circus really grated on my nerves. It's been a comedy of errors around that place this week, with Micah bearing the brunt of the errors. We have received numerous apologies from doctors and nurses today. The biggest decision made today is that Micah's GI tract needs to be "scoped" (an endoscopy, or EGD, for those of you in the medical profession). After setting a time of 3:30, the GI fellow realized (after questioning from "Mom"... they don't bother learning parents' names around here) that she was dealing with a "cardiac kid," so the procedure couldn't be done in the normal location... it had to be done in an operating room with an anesthesiologist who specializes in cardiology.

Putting Micah under general anesthesia in an OR is something we try to avoid, but this EGD seemed to be inevitable to us all week. So once the on-service GI doctor put in the order for it, Mark decided to pack it up and drive here so that he could be here while Micah was in the OR. We were "on call" for the afternoon, meaning it could happen anytime that an OR opened up with an appropriate cardiologist. I had a 5-minute warning that surgery was coming up to get him at 1:00ish. So, down we went to surgery (Mark was en route at that time). Long story short, after talking with me for 10 minutes, the anesthesiologist went out to do some more "research" on Micah.

She ultimately decided that she didn't want to put him under until they could rule out infectious endocarditis (an infection in the lining of the heart). The reason for concern is that Micah has had intermittent elevated temps since Sunday (his highest being 102, which is the threshold, apparently, for when they would take it seriously... are you serious???). So not much concern has been placed on his elevated temps (this is one of the circus rings, I think). Don't worry... no one REALLY thinks he has endocarditis, but they have to rule it out.

They had him scheduled for an echo cardiogram this afternoon but didn't go through with it because the cardiology team couldn't decided whether they could even give him the sedative required for the procedure. Once they worked through all this, it was past 5:00 so it appears he'll have his echo tomorrow. After they sedate him for the echo, they'll also do an MRI of his brain. Don't ask me to explain why. This is the one piece of the puzzle that I don't understand.

He now won't get his endoscopy until Friday. They're also going to have an ENT (Ear, Nose and Throat) doctor in there to check his ears while he's under anesthesia (can I just tell you that if this all comes down to an ear infection, I'm going to go ballistic???). But if the ENT deems it necessary, he can place ear tubes at that point rather than us having to schedule that for a later time.

This brings us to the Down syndrome education point of the day. Most individuals with Down syndrome (Ds) have narrow and sometimes oddly-shaped passages resulting in frequent ear infections and higher incidence of hearing loss. So placing tubes early on can sometimes help avoid those side-effects.

11 comments:

Melanie said...

Oh my!! My head just spins when you talk about what you go through medically with Micah. We are still praying that you can be strong once again.

Mindy said...

Thanks for the update. Praying!

The Boltz Family said...

Maybe instead of EGD, they should call it EGAD! Because, egad! You guys have been through so much! Prayers are with you, as always!

Jeanette said...

Oh dear! What a circus it is indeed. Prayers to you all!

Kris said...

Oh dear. Big frustrated SIGH. I don't even know what to say other than I'm really sorry you all are having to endure this, especially Micah. I'm praying today for someone to get their act together and coordinate the care that Micah needs to find some answers and get you all home! Kris

Laurie said...

I'm so sorry that you and your sweet Micah have to go through all of this. Prayers for your whole family...

Tracy said...

My goodness, Jeannie! That is the number one reason I am glad that I no longer work at a "teaching" hospital! There are way too many hands the pot at any given time! I am so sorry you have to go through all this. Thanks for keeping us updated. I am praying the rest of the week gets better for you!

Jamie said...

Hi Jennie, Just wanted to let you know that you, Micah and the rest of your family are in our thoughts & prayers.

Rachel said...

My Goodness....Let me just say...KEEP YOUR CHIN UP! He will do just fine. He is one stong kiddo!

Praying for you always,

Rachel

Eric Pederson said...

I received an e-mail from your brother, Jim, and I just wanted to let you know that we're praying for your family!

Signe said...

I hope that Micah is improving - so sorry to hear that he is going through this. Please post an update at BBC when you get the chance.