Our Teddy Bear's Journey

Theodore was born with renal failure. This is his story.

Surgery

on March 31, 2012

I haven’t had a chance to take pictures of his new setup.

They ended up completely replacing both the Port and the Catheter. The new port is in the same place as the old one was. The PD catheter is in a completely different place. I was surprised by this, as I anticipated them at least using the same incisions, but ultimately I’m happy about it. Though I haven’t heard their official reasons for doing it this way, the end result for me is that the PD catheter comes out of his very upper abdomen near his ribcage, rather centrally located. It’s several inches away from his G-tube. Yay! Previously, the catheter was less than 1 inch away, and it made dressing changes so tricky, and when the tube leaked, then we worried about stomach contents getting all over the PD dressings. And the steriod cream I put on the Gtube stoma for granulation tissue (new tissue growth that reminds me of the scarring on trees after you cut off a limb) is really oily, so it was constantly degrading the adhesive on the bandage covering the PD dressing.

He is completely miserable. Completely. I mean, he’s either asleep or he’s crying hysterically and writhing. We’re keeping up on the tylenol, I’m considering asking for another dose of morphine if he is still miserable next time he wakes up.

—-

So, last night, it was getting to be past 10 (2.5 hours after they took him back) and I was starting to get anxious. Then the surgeon stopped by to say that it went really well, that he’d replaced both, etc. and that he’d been in recovery about 10 minutes and I could go see him.

What?

Normally, at UIHC, with kids, they get the parents back in the recovery room almost as soon as the kid gets there. Last time, I arrived at nearly the same time he did. It’s one of the things I like about this place – they believe that kids get stable faster with their parents there, and they WANT parents there asap. There’s none of this “we’ll bring him to you when he’s awake” crap that I had to put up with when W and G had their oral surgeries.

Though other hospitals and surgery centers claim to have all this HIPAA-related concern about privacy in the recovery room, I don’t buy that it’s HIPAA. Each recovery station here has curtains and if anyone has concerns about their privacy, they just pull the curtains. I’ve noticed that the kids/parents in the peds recovery room haven’t seemed to give a hoot.

But, normally, he has surgery during the DAY. Apparently things are different at night. During the day, when they buzz you, you go to this particular door, pick up the phone, press the yellow button, and tell them your business, they let you in, you find your kid, no big deal. At night, that phone is not answered, so you have to go in through the SICU waiting area.

So I got off the elevator where I was told and there was a sign on the desk there to go across the hall to check in. I run across the hall to the SICU desk and tell the woman there that I’m trying to locate my infant who is in recovery. She says she’ll be with me in a minute. I wanted to yell “DID YOU HEAR ME WOMAN?? MY BABY NEEDS ME AND, SO HELP ME GOD, YOU”RE GOING TO HELP ME FIND HIM.” But I didn’t. I waited patiently. Well, I waited, anyway. Maybe not patiently.

After 3 years of waiting, she finished up whatever she was doing and looked him up in the computer. “He went in at 7:30 and came out about 10 minutes ago and is in recovery.” NO KIDDING!!  OK, Sarah, this woman is just doing her job. I calmly said “Yep, I know all that, the surgeon just stopped by his room and told me to come here and be with him in recovery.”

“Oh, well, they won’t let you go back there.”

My inner voice was screaming obscenities at this point, but I said, “yes, they will. He is 4 months old and they’ve always let me in after previous surgeries, I’m just not sure how to get to where he is from here. Can you please direct me?”

“I’ll have to call and find out, because they’ve got a lot of other people in there and you can’t be in there.”

“Ma’am. I am going to be with my son. Nobody is going to stop me. I am going whether or not I have permission. Where is he?” Though I posted on Facebook that I had yelled, I actually did not yell in the sense of raising my voice. (It should be noted that I also did not physically assault her.) I kept my voice under control and did that Non Yelling Yelling that my mom was very skilled at. (the kind where you, as a kid, would say “stop yelling at me” and she’d respond, correctly, that she had not raised her voice.)

“Well. It is a locked door. Somebody has to let you in.”

Now, I’ve been in this hallway many times. I know what door she’s talking about. I’ve stood before it numerous times and said goodbye to my baby before surgery. One time, the nurse, Teddy, and I stood there for 1o minutes waiting for someone to answer the door phone to tell us where to go. During those 10 minutes, at least 15 people came in and out, opening the doors each time. It’s not hard to gain access to the OR suite.

(And never underestimate a mama on a mission. I’m confident I could take out some of the scrawnier residents and steal their badges if the situation called for it.)

She did call, and asked at least three times if they were really super duper absolutely certain that it was ok if I came back there.

So I ran off to where she told me to go, wishing all along that I’d just tried the Wait Until Someone Opens The Door technique in the first place. Humorously, as I arrived at The Door, someone else was leaving and I just cruised on in.

Arrived at Peds recovery and it was empty, with two nurses watching TV. I told them who i was and who I was looking for and they both looked at me like “huh?” At that point, I was near tears and said, “I’m sorry, I’m starting to get very frustrated because I’m just trying to hold my 4 month old and nobody seems to know where he is.” “Well, now, don’t get frustrated! Let’s go look in the other room.” So that lovely woman walked over to the ADULT recovery area, where apparently everyone recovers after hours, found him, and hustled me over to him. yay.

(A word about HIPAA. They solved that problem by keeping my rocker turned facing into the corner, and when they brought someone out and put him at the station across from ours, they just pulled his curtains. No biggie. Funny, though, as he was waking up, they were asking him what is his name, where is he. He was confused and kept telling them his hometown, instead of Iowa City. Then they asked what was the month. He didn’t know. And as I’m listening to this, I’m realizing that if I ever have surgery, I’m soooooo flunking the Post-Op quiz. I had been awake all day, and I had no idea what month it was, either. I wanted to run over and hold that guy’s hand and say, “hey, buddy, don’t worry about it. I didn’t have surgery today, and I don’t know, either!”)

 

For the record, let it be noted, that this woman was not a monster. She was doing her job. Generally speaking, people are not allowed in the recovery room. It’s entirely possible she has never run into the situation of an after-hours surgery and a parent headed in to be with their kid. Her job is to tell families where their loved ones are and whether or not they can go be with them. She was doing that. She certainly could have done it with a little more sympathy, but I’d be willing to bet that she deals with very worried and near hysterical people all day long and has trouble working up much sympathy for just one more stressed out mom. It was fine. I just wasn’t in the mood to deal with her delaying me further.

—-

As a side note, though I’ve never had surgery myself, I’ve stood at the side of both of my parents as they recovered from surgery. Just once with my dad, and I lost count with my mom. Four that stick out. They were always so stinking funny, half in the real world and half in the anesthesia world. Every time, with Teddy, I’ve wondered what is happening in his mind as he wakes up. He cries like he’s scared.

Advertisements

3 responses to “Surgery

  1. Andie says:

    So sad the little guy has to go through so much at such a young age. I can’t imagine what it would be like watching him go through all that and not being able to get to him when he’s done. I think I probably would have freaked out on that nurse, doing her job or not, He is only four months old!! My heart goes out to you and your family Sarah. Such a tough situation to be in. If there is anything, ever, that you guys need…even if its just to hang out with the kiddos…please let me know.

  2. Renae says:

    I’m so sorry you had to deal with that. You would think parents with baby would be standard operating procedure…

    When E had his tubes the came and got me, I heard him crying from outside the door, he stopped the instant he was in my arms. Of course E was 18 months so he was more aware.

  3. Good for you for standing your ground. It can be so hard, especially that late at night, to keep your bearings and not fall apart.

    When J had his port out I ask every. single. person that walked into his room before surgery that I wanted to be with him when he woke up because I knew, with out a doubt that if they woke him up and I wasn’t there he would be hysterical. Everyone, including the surgeon, assured me that it wouldn’t be a problem…

    Until after surgery, when no one knew what I was talking about and as three different people were trying to find out what was going on they woke him up with out me…a nurse came running into the room in a *I’m trying not to panic* mode and said they needed me…yep, I told you that before surgery…

    Once he was in my arms and nursing he calmed down, but I was still really miffed. He was in a room all by himself, in an actual room with a door that could be closed.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: