Tweet and Meet

Eve Smiling 7 Days Post Operation, originally uploaded by TaulPaul.

It has been pretty uneventful the past couple days, other than Eve showing withdrawal symptoms from the pain killers. It’s actually a pretty scary to see your kid going through drug withdrawal. She had Morphine post op, so they’re using Methadone (yes, the same drug for Heroine addicts, but smaller doses).  It is pretty amazing that this can happen less than a week after open heart surgery.

In other news, Ron, Isabelle, Andre, and Lynda came to visit us at the hospital today.  I can’t say enough about these guys.  They’re pretty awesome to take time out of their day to come see us.  We got to talk about our kids, swap hospital stories, and talk about the future of CHD awareness.  Thanks for the coffee guys!

Update:  I forgot to mention she played Peek-a-Boo for the first time today, and actually laughed…the laugh was a first as well

Eve’s Chest X-Ray, originally uploaded by TaulPaul.

Dr. Del Nido and Dr. Triedman stopped in today to check up on Eve. I believe it was the first time we’ve seen them together. It was nice to have a chat with both of them. You can tell they have a great rapport. Dr. Del Nido talked a bit about some of the projects they’re working on for pediatric cardiac imaging. It was nice to chat about tech, as it’s one of the things I’m comfortable blathering about.

In other news, we saw Jennifer and Stellan come in today. They were in the CICU room next to us for a couple hours. I think they moved when I stepped out to get some of Eve’s stuff. It’s nice to see they’re getting help here, and another Minnesota family is nearby.  We found out about Stellan right when we learned we would be going to Boston.  I contacted Jennifer through Twitter, and found out several days later that they would also be coming to Children’s Hospital Boston.  I can imagine the concerns, as Eve had an Ablation to her heart in order to control her SVT and WPW, but Stellan’s case seems to be much more severe.  Our thoughts and prayers are with them as well.

So today has been good and bad. Eve has been crying uncontrollably for the last 2:30 hours. I thinks she has gas, and nothing is really working at this point. Her stomach is hard as a rock. The nurses are trying a lot of different things. I think Eve is probably just going to pass out, actually, I’m surprised she hasn’t passed out yet.

Eve will be extubated around midnight. This means they’ll take the breathing tube out, and let her breath on her own. I can’t think of any other time where I’ll be happy to hear any baby cry more than that moment. She cries now, but since the tube goes past her vocal chords, there’s no air to make any sounds. It absolutely crushes me. They suction her tube about once an hour. This is usually the only time she wakes up. She gets pretty worked up, and she’ll kick her little legs. She’s even grabbed the tubes a couple times. I let her hold one of my fingers, while she looks up at me with her teary eyes wondering why all this is happening to her. I just smile back at her, and tell her everything will be fine. It’s all I can do to prevent myself from crying myself. They say she’s not in any pain. I hope that’s true.

I had started compiling a list of things that I’ve learned since we were admitted into Children’s Hospital Boston, but this includes things leading up to Eve’s surgery:

• Never feel like you can’t ask the nurses and doctors questions (for anything)
• Wi-Fi is a Godsend at the hospital, for work, for family, for feeling like you’re still connected and not alone
• I’ve used my iPhone more than my laptop for the last 3 months, it has been a huge crutch for messaging and publishing
• I never thought we had it hard through this experience, and I’m continually reminded of this as we meet families who really do have it rough
• People’s compassion knows no bounds
• I’d like to forget about a lot of the things I’ve seen through this experience, but probably never will
• Getting messages from everyone, no matter how small, is a huge pick-me-up
• iTunes movie rentals have been a life saver (this also goes back to the hospital wi-fi point)
• I have a hard time showing emotion
• The medical staff has your best interests in mind, but you have a say in how most things are done
• Eve has more strength, determination, patience, etc… than I ever will

There are several of these water tanks with air bubbles throughout Children’s Hospital Boston. It seems like the kids like them, which of course means, I like them.

We stayed at the Fairmont Hotel Copley Plaza last weekend. It we pretty nice. I took some video of the ornate lobby, and even used my iphone and the Pano app to get a panorama photo.

They have three of these newer Ms. Pacman / Galaga Cocktail Coin-Op machines in the family lounge area. Bonus is they’re free! I’ve only played once, but showed some younger kids how to play. I felt like Michael J. Fox in Back to the Future 2, in the Gunslinger scene. “Oh, that’s a baby’s toy.” Yeah, kid, yeah.

Today is the second day where Eve is kept sedated. She is on a breathing machine to take the strain off her lungs. This is basically a tube that goes down her nostril, and down her airway. She has a neckline that delivers drugs like Morphine and Versed to keep her asleep to keep her from waking up. Her other lines include a peripheral IVs in her hand and foot, a tube in her other nostril going to her stomach to suction any gas buildup, tubes coming from her chest to drain any blood or other fluids from her heart, a line into her atrium to test pressures, and a couple wires coming from her chest in case they need to use an external pacemaker.

It sounds like a lot of stuff, and it is. I have a few pictures, but have chosen not to post them. She’s a little swollen today, a bit more from yesterday. She looks pretty good, honestly I was expecting a lot worse. I guess looking at the big picture, it’s just a small bump in a long road for her. The first 24 hours are critical for her recovery, and the doctors and nurses say she’s doing great. I don’t know if they’ll wake her up today or wait until tomorrow. They needed to give her a paralytic drug last night because she started to move around quite a bit. It was a bit frightening to think that she was already trying to wake up. Our biggest fear is that she’ll be in pain. The docs have assured us that she’s on plenty of pain medication and the Versed is like a Lithium, so she’ll have no memory of this experience.

Annamarie and I stayed at the Devon Nicole House for heart families last night. There’s probably a little over a dozen shoebox sized rooms with a double bed, and sleeper chair. It’s very cozy. I used the chair combined with a blow-up mattress, and let Annamarie have the bed. Honestly, I think I got the better end of the deal. We woke up this morning, and walked right over to the hospital (making a quick pit stop for my coffee). We’re just spending time at Eve’s bedside.