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Eve Smiling 7 Days Post Operation

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 Post Extubation – Eve Today

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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.

Things I’ve Learned About This Experience, So Far…

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

Hospital Bubble Tanks

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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.

Copley Plaza Fairmont Hotel Lobby – Boston, MA


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.

Fairmont Copley Plaza lobby panorama

Ms. Pacman / Galaga Cocktail Madness

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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.

Eve Heart Surgery Recovery

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.

Devon Nicole House

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.

Morning of Surgery

We had a good weekend. Yesterday we spent several hours at Isabella and Ron’s place, eating and talking. It was so nice that they drove to pick us up from our hotel, and allowed us to get out of the hotel room. The amount of kindness we’ve received is beyond expectations.

I knew today was going to be hard. I don’t think this type of thing is ever easy, or gets easier over time. We were up at 5:00 AM, packing and getting ready to leave. I was a bit crabby, lacking coffee and just my overall concern over getting to the hospital on time.

We went through registration once we arrived, and the anesthesia team came along with the nurses to give her some sedatives. We held her for around 5 minutes before they carried her off. I got a few small smiles from her this morning. I’m happy for that.

It’s hard to articulate my feelings, and probably impossible to put myself into Annamarie’s shoes. I was up last night thinking about how I might not be able to see her smile for a few days, as they may keep her under for awhile to let her heal a bit better. Annamarie is more concerned to see her with a breathing tube. That doesn’t bother me as much. I know I’ll feel better when I see that first smile again. Then I’ll know everything is OK.

Update:  They just make the first incision 9:15 AM ET

Update:  She’s been on bypass for around 45 minutes and everything is going well  10:45 AM ET

Update: They’re warming her up and ready to restart her heart, where they’ll take an echocardiogram to see how the repair went.  If the regurgitation is within acceptable levels, they’ll close her up, and take her off bypass.  If it’s not, they’ll go back in and try to reduce it more.  11:45 AM ET

Update: She’s off of bypass.  Dr. Del Nido will be coming out to talk to us shortly.  12:15 PM ET

Update: Talked to Dr. Del Nido.  She did great!  +4 leak now at +1.  Leaflets a little thick at the ends, may thin out on their own.  Headed to PICU to see her now. 12:45 PM ET

Post Ablation Update

Eve Smiling, originally uploaded by TaulPaul.

Eve’s cath procedure was successful. Dr. Triedman was able to perform an ablation to get rid of the extra electrical pathway that was causing Eve’s SVT. This will help long term, of course, but short term this will allow for a better recovery from the mitral valve repair scheduled for Monday. We haven’t met Dr. Del Nido yet, but that should happen today. He’ll be performing the valve repair on Monday.

We’ll probably get discharged from the hospital today. We’re switching hotels, so I’ll be heading out to get our stuff, and check out of our hotel. Hopefully we’ll be able to get out a little this weekend.

Heart Families

Andre, Isabella, and Ron, originally uploaded by TaulPaul.

I forget to tell you all about this great family that has been helping us while we’re out here in Boston. Isabella, and Annamarie met on a message board awhile back. Isabelle’s husband Ron, actually picked us up from the airport, and brought us to our hotel. (too kind) I showed Ron my GPS on my iPhone help navigate the chaos which is Boston. :) He’s an excellent driver BTW.

They came to visit us Thursday night, and brought their wonderful son Andre. You can follow them on Isabella’s blog:

We had a snack down at Au Bon Pain. It was really nice to meet all of them, and hopefully see them again before we leave.