Homeward Bound

We're expecting to be released from the hospital tomorrow!! Yeah! The last 24 hours have seen dramatic improvements. Sophie is now taking regular old Tylenol and seems to be pain free. All the tubes and wires have been removed except for one IV line that's not even hooked up to anything. She's not quite up to her regular squirming, but her mood is almost a cheery as usual.

It's definitely at the stage where it's better to go home because you can't get any rest in a hospital. She would have slept through the night last night if it weren't for the pesky tech coming in every four hours to take vital signs. Daytime is even worse because you add doctor visits, X-rays, EKGs,... Tomorrow should be busy with all the before-you-get-released check-ups and training. Then she can get some good rest.

We are so thrilled with how this week has gone. It's so wonderful that her heart is fixed!

What day is this, anyway?

Well, late this afternoon Sophie got released from the NICU and now has her own private room upstairs. Yay on 2 counts: 1 because she is off all the IVs and pacemaker and 2 because it is much more comfortable, quiet, and private (including private bath) in there.

They are still giving her blood pressure medication, but it's oral now and not the iv drip. I never thought about it, but before the surgery her heart was used to pumping extra hard to achieve normal circulation and after it is suddenly much more efficient, but still beating just as hard, which leads to increased blood pressure. Hence the meds for a couple weeks until her heart adjusts. I listened to it with a stethoscope on Friday during the pre-op and it sounded much different than mine. Instead of the "lub-dub" it was a loud whooshing "wow wow" sound, kinda like an ultrasound, if you've ever heard one. And now it sounds perfectly normal the nurses tell me. Just amazing.

We did talk to the surgeon yesterday morning and he told us that things went as expected. He also removed a little bit of extra tissue that was causing the bloodflow to be slightly turbulent just before it exits the valve. He said the theory is that this "swirling" leaves little deposits over time that build up. He removed them and cleaned up the "geometry" to make it more laminar. But he thinks everything went well and there shouldn't be recurrence of any of these issues. So we are thrilled.

I stayed with Sophie last night and I don't think anyone in the ICU got much sleep. Between her waking up, the monitor alarms going off, and her neighbor waking up, it's tough to get any sleep. Then when I finally got dozed off at 7:30am and was getting pretty decent rest, they woke me up at 9 to kick me out of the ICU so they could close it and do a procedure on a patient. I got a few naps during the day, but am pretty beat. Sophie is looking better today, but was still needing a lot of medications for the discomfort. The good news is that Stephanie and I got to hold her this afternoon after they took all the IVs out, so that was nice. That really comforted her and she took some pretty good naps then. Hopefully she'll need less medications tonight and tomorrow as she heals up. Stephanie is up there tonight staying with her, so I hope things go well.

waking up is hard to do

I got here a little after 10 this morning and found Sophie doing little jabbers and chewing on the lead for the oxygen saturation sensor. They had taken her breathing tube out about 20 minutes before. Then she was babbling in a raspy, weak little way. They gave her a little sedative to make her sleepy after she started fussing and pulling on more stuff. They took a couple of IV lines out, so she looks a little more normal. And they just now removed the chest tube, which naturally she wasn't very happy about. The surgeon talked to us and said she'll probably be out of the ICU and in a regular room tomorrow.

Not sure if there'll be anything else to report today. She's doing great so far. Now they're gonna have to figure out how to keep her still for the next 4 days!

The Big Day

6pm We've been in the ICU for a little over an hour and things are going good. Sophie is still sleepy and on the respirator. They're letting her anesthesia wear off before the remove the breathing tube. It looks like her heart rhythm might be picking up a little, which is good. We probably won't hear from the surgeon until rounds tomorrow, but another cardiologist is here with her now.

It's been a long day. Sophie woke up at 1am last night perky and ready to play, so we let her and she was up til 3:30 am. But it was worth it. I think Stephanie is staying up here with her tonight. I'm about ready to go home & get some zzz's.

4pm She looks great! We got to peek at her as they wheeled her down to the ICU and she looked better than after her first surgery. They should have her stabilized in 45 mins to an hour and then we'll get to see her. Still waiting on the final report from the surgeon, but the staff said everything went very well.

3pm Sophie is off the bypass and her heart is working on its own! The cardiologist said the repairs and flow look good. The beat is a little erratic and she is needing help from the temporary pacemaker. But that is not unusual and should hopefully settle down over the next few days. They also said the repair she had in January still looks good. So everything is going well. They said about another hour to finish up.

1pm She's been on bypass for 1.5 hours and everything's fine.

11:20 okay, we just talked to the surgeon, Sophie is prepped, and they are about to get started. He said about 4 hours and we should get hourly updates.

9:10 Well, we've been waiting for over two hours now. Sophie is napping and we thought they would come to take her back 30 minutes ago. They say an hour for anesthesiology & prep, then 2-3 hours for the procedure.

Endoscopy Results

We've got a little more information after the endoscopy, but not a lot. According to the doctor, there was no "ah-ha" moment. The test showed that Sophie has a lesion in her stomach that's about 2 centimeters. We're going to put her on an antacid for a few months to let that heal. The doc said that it could be causing some of the problems but he didn't seem convinced that it could really explain the extent of the unrelenting vomits. They also did a biopsy in the area and we'll hear back about that in a few days.

Endoscopy

Well, Sophie is having a gastric endoscopy this morning. We're hanging
out now in pre-op. Should be pretty quick once they actually take her
back. I'll post an update later.

Sent from my iPod

followup

Sophie spent last night in the NICU. Everything from the surgery went fine and she was off the ventilator when she came back from recovery. She has been pretty groggy and mostly just sleeping. But she also seems to startle very easily. I'm not sure if this is from the noisy environment of being back over in the NICU or what. We got to hold her for a while this afternoon, and then she seemed to sleep better.

The surgeon finally came by today to do the follow-up on her after 5pm. He cleared her to start eating again, so over the next 24 hrs they will build her back up to where she was before the procedure. They are giving her pedialyte now, and will take her IV out as soon they can get enough fluids in her through her new feeding button.

Hopefully, tomorrow they'll move her back over to the "step-down" unit again. She can build her strength back up and we can start learning what we have to do to get her home. Stephanie and I are already making mental lists and trying not to get freaked out.

Button procedure updates

11:40 Okay, she's done. The surgeon said everything went great, she is in recovery, they will take her off the vent soon, and then she will go back to the NICU.

10:45am Well they changed their mind, called our nurse and asked if they can do it now. So they just took her back for prep and Sophie let them know that she was not happy about it

9am They just told us it will be at least a couple hours, and the surgeon told us he wasn't available til after 1pm. So we'll be hanging out in the crowded beeping NICU for a while.

Minor surgery tomorrow

Monday morning Sophie will have surgery to put a "button" into her
stomach for a feeding tube. I know, it may sound kinda gross, but
luckily she won't know the difference. This will make it easier for
us to give her non-bottle feedings.

This is a very simple procedure, especially compared to what she's
already been through, but it will still mean general anaesthesia and a
ventilator (for infants, in adults this would be done as an out-
patient procedure). She should come off the vent right after with a
small chance that she'll be on it overnight.

She's scheduled for 9:30, so we'll see how that goes. We're excited
because it's one step closer to home!

Sent from my iPod

Recovery

So far, everything has gone about as well as could be expected. We
are very pleased, hopeful, and tired. Sophie is in the peds ICU for
2-3 days of recovery following surgery, then will return to the nicu.

The procedure went just as the surgeon said it would. He repaired the
coarctation (restriction blocking flow to the lower body), fixed a
narrowing in the mid-arch, and removed the ductus that they had been
using to bypass the restriction.

He and the cardio doc think they will have to go back in later to fix
the vsd (hole between chambers) and maybe readdress the mid arch. But
this can easily change again. There is a whole new system at work now
and they have to observe and see how the repaired parts work as one.
They already did another cardiogram and said things are looking good.

Sophie is sedated, still on a respirator, and has a lot of tubes and
wires attached to her. But they will start waking her up tonight and
she should be breathing on her own by tomorrow. Then they'll remove
all that other stuff.

From there back to the nicu because of her small size and theyll want
her to get bigger.

It's been a long day. Knowing there are people who support and care
about us has made it easier to handle.

Sent from my iPod

2:30 pm She's done!

Surgery is all finished. They're going to move her to the picu and
then the surgeon will be coming to let us know how it went.

Sent from my iPod

1:15pm update

The surgeons are still working. No complications. Probably another
hour they say.

Lunch in the cafeteria was actually good: western burger with BBQ sauce.

Sent from my iPod

11:15am

Got a call from the OR nurse and they're starting the procedure now.
She said they'd give me hourly updates.

Sent from my iPod

9:45am update

Ok I'm online via wireless and posting from the surgery waiting room.
They took Sophie back. Prep is about an hour and surgery around 3 hrs.

The surgeon took a lot of time to explain everything to us, and we are
confident in him and that things will be fine.

Sent from my iPod

Surgery Scheduled

     Exciting news!  Sophie's surgery is scheduled for tomorrow (Monday) morning!  Brian & his mom were at the hospital this afternoon.  While they were visiting, the surgeon & pediatric cardiac specialist came by to take a look at her.  The cardiac specialist is concerned about the potential side effects of her current treatment, as are we.  (The medication she's on can lead to problems with her lungs.  This medication won't be necessary after the surgery.)  The surgeon said he's comfortable doing the surgery at her current size since all of her other systems are so strong.  So, we're moving forward.  

     We meet with the surgeon at 7 tomorrow morning to get more information about the procedure itself & the recovery expectations.  I have no idea how long the surgery takes, but we'll post an update as soon as possible.