Monday, August 14, 2006


We may not be going backwards, but we aren't moving forward very darn fast either. It's two steps forward and one step back ... or is it one step forward and two steps back? Mark has only been there three days and he is already getting irritated with the way things are progressing. Glad to know it's not just me. Jack does well for the majority of the day, but he continues to have periods of respiratory distress that just knock him down for hours. Mark is getting mixed messages. One group of docs tells him that today's x-ray is unchanged and another group tells him that it is worse. It's very frustrating because there are too many "teams" involved and they all defer to the other and the end result is not a damn thing is getting done. The CT surgeon told Mark that the x-ray looked worse and that he thinks they should get a CAT scan of the chest within the next few days. Why do we have to wait a few days? Problem is, Jack is a "victim" of politics. Technically, Jack is "owned" by orthopedics, but from their perspective he is doing fine (incision looks great -- that's all they look at). Even though Jack's issues are not orthopedic, all the other specialties have to get ortho's "OK" to make decisions regarding Jack. It is total B.S. I wish ortho would sign off and let another team take over at this point. (we need Dr. Schuler ... she is the one person who could always make things happen :-(

I thought putting 1500 miles between me, Jack and the team of docs would keep me calmer .... it has not. Jack is not in the hospital because he necessarily needs to be there, it's because no one will take charge, figure out what the problem is and come up with a plan. Mark is going to strongly suggest that the chest CT be done tomorrow and someone needs to tell us why Jack is still draining chyle, why he is having periods of respiratory distress and what they are going to do to get him better and out of the hospital. He's also going to suggest they have a pow-wow and get on the same page. It is unlikely that I will be going back to St. Louis on Thursday because there is no need for both of us to be sitting at the hospital.

In case anyone is wondering ... no, I don't wish we'd had the surgery done in Phoenix. I don't question the fact that the surgery was performed by one of the best and that the results were fabulous. Problem is being on the "floor" and the politics I mentioned. In the past, Jack was discharged from the PICU - an entirely different experience. I knew when we were headed to the floor that there would be frustrations and problems.

Mommy is so sorry Jack .....


Anonymous said...

Oh, Ann! Grrrr!

For the record, it's two steps forward, trip over your shoelace, land on your nose, choke on the snot, sneeze while trying to get to the sink and end up smacking your forehead on the medicine cabinet. Or something like that.

I keep peekin' in, looking for the magic words, and before I hit the reload button I do a little "get healthy Jack" dance, looks nothing like the indian rain dance and everything like an assylum-escapee shooing bees.

Hugs for you, I SO wish it was something more useful!


mom2twinsplus1--Lori said...

God Bless you guys Ann, Emma is in PICU and we are fighting the doctors a lot like you. If you guys find the magic trick to break through the politics let me know. I will share any tips I get too. Seriously though I am so sorry Jack isnt improving very fast. I pray for him everytime I pray for Emma which these days is about every 5 mins!

Kathy Hawley said...

I'm so glad you went home. I hope you get some rest. I'm sorry to hear about the chylothorax and the yeast. I hope you can get ortho to "discharge" him to the CT and ID team, you are right, it would be the best way to care for him now. I pray that this resolves quickly and that you can get him home. I think of you often.
Kathy H.

Anonymous said...

Hang in there Ann...I know it is easier said than done. We are praying, and praying that you get some answers and today is better for Jack and for all of you.
Pat and Chuck

Anonymous said...

Hey what happend to the print shop photo magic you promised on our picture! It was so good to see you, I just wish we could have had more time together.

I wish there was something more I could do. Hang in there and get those toe nails done this week.

We'll see you in December.

Anonymous said...

Ann, I KNOW I can't say it any better than Kari. Watch out for the medicine cabinet, eh!! I'm praying/hoping for some resolution to the political nightmare ensuing and for Jack to flash those pearly whites soon. Jack, get well soon!! Whitney

Melisande said...


Grrr is right! Don't know what to say except:

Never Argue with a Woman

One morning the husband returns after several hours of fishing and decides to take a nap. Although not familiar with the lake, the wife decides to take the boat out. She motors out a short distance, anchors, and reads her book.

Along comes a Game Warden in his boat. He pulls up alongside the woman and says,

"Good morning, Ma'am. What are you doing?"

"Reading a book," she replies, thinking, ("Isn't that obvious?")

"You're in a Restricted Fishing Area," he informs her.

"I'm sorry, officer, but I'm not fishing. I'm reading."

"Yes, but you have all the equipment. For all I know you could start at any moment. I'll have to take you in and write you up."

"If you do that, I'll have to charge you with sexual assault," says the woman.

"But I haven't even touched you," says the game warden.

"That's true, but you have all the equipment. For all I know you could start at any moment."

"Have a nice day ma'am," and he left.

MORAL: Never argue with a woman who reads. It's likely she can also think.

What else can I say?;)