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+ 0 - 0 | § What a weird little boy!

Since we got home yesterday, Alex has been doing a lot of very strange things.  First, he's been a little more agitated than he used to be.  I'm sure that most of it can be explained by the fact that he had surgery a few days ago, but it's sometimes difficult because we don't know what to do to calm him other than give him Tylenol.  Second, he wants absolutely nothing to do with his binky.  He just doesn't want it.  I haven't yet decided if this is good or bad, but I guess we'll find out.  Third, he rolled over onto his stomach by himself for the first time.  Of all the times to start this, I would never have expected it to be now, but he did!  Maybe having a little more oxygen in his blood is doing some good!

Happy Easter everyone!

+ 0 - 0 | § Please bear with us.

Ever since things went fubar with running out of room, it appears as if some of the data in the blog got corrupted. I don't think that posting comments is working right now. I'm attempting to fix things.

I think things have been fixed now ... but you never know.

+ 0 - 0 | § Surprise, surprise!

Guess who's home??  The plan this morning was just as Dan said...they were prepping us to leave tomorrow.  However, they decided to call the surgeon this afternoon to give him an update on Alex's stats, and he decided that we could go home today, so we did!  Alex had the last IV and the chest drain removed (OUCH!!), and off we went to the heaven that is home. 

Isn't it amazing what they can do these days.  THree days after open heart surgery, a 7-month-old baby is well enough to go home.  Thanks to everyone at Hershey, especially the Pediatric Heart Group, PICU and PIMC staff for everything!! 

On a separate note, our surgeon, Dr. Meyers, is a part of the Doctors Without Borders program and donates his time and skills to help those that are less fortunate.  If anyone is looking for a good organization to donate to, please consider them.

+ 0 - 0 | § A small move

Alex was moved to the pediatric intermediate care unit (PIMCU) care last night. He got his own room, because the other bed in the room was empty. Alex and I slept there last night. I could tell that he appreciated having a little more silence than in the busy PICU. They've started all of the balls rolling to get us to be able to leave tomorrow, as we've already picked up the medications, and are scheduled to watch the appropriate instructional videos this afternoon. Let's hope that everything keeps going on track.

+ 0 - 0 | § More pictures, pre-op and post-op

I just put a bunch more pictures up on the web for everyone. There are some pre-op ones, and some post-op ones. Just as a warning, in the post-op ones, you can see Alex's incision site, which some people might not want to see.

+ 0 - 0 | § Morning Update

Last night, they removed the arterial line in Alex's thigh, and had a bunch more wires and such removed this morning. He had his peripheral IV removed from his foot, they removed the profalactic (sp?) pacemaker wires, and they stopped sending dopamine through the central line in his neck, so they were able to remove all of the connected lines to that IV, and just hepwelled it off. If the previous sentances don't make sense, they just removed many of the lines attached to his body. The poor little bugger was poked so full of holes in the last few days he resembled a salt shaker. Having more freedom makes Alex much more happy, and it allows Kari and I to hold him, which lets him get some good naps in, in the noisy PICU.

His chest tube is still draining a little more fluid than would be optimal, so it looks like Sunday is the projected date that they will be able to take it out. Taking the chest tube out really determines when we are able to take him home, so maybe we'll get a nice Easter present. Of course, that is all subject to change.

+ 0 - 0 | § Giddy...

Speaking of being giddy, Alex's cardiologist said that he may be home sometime this weekend if things continue to go as they have been.  Also, they are planning to move him out of the Intensive Care Unit tomorrow, to the Intermediate Care Unit (PIMC).  Thank you to everyone who has been sending good thoughts our way...we are surprised, relieved, and ecstatic that things have gone as well as they have so far!  (I'm knocking on wood right now...)

+ 0 - 0 | § Some more advances

They were able to take one of his arterial lines out this afternoon. That means that he doesn't have to have his left leg restained anymore, as the line was in his left groin. This makes Alex, and thus us very happy, as he can return to his usual Mr. Kicky-Pants routine. He will still have to have his arms restrained when we are not at the bedside, as he can still do some serious damage to himself by pulling out his central line that he has in his neck, or his chest drainage tube.

If all goes well, tomorrow, they'll be able to do some things (I'm not sure what) that will enable him to not be restrained at all. I think that they might be able to remove his pacemaker leads today as well. They placed the leads for a pacemaker when they did his surgery yesterday. These are only the leads though. They aren't hooked up to anything. They just put them in there in case he developed a strange heart rhythm or something, so that it would be easy to hook a pacemaker up to it, just in case.

They've started Alex on pedialyte via his GJ tube, and if that goes well, they'll start with some milk, at a low rate, and then, gradually step it up to the rate that he was at before the surgery.

Things on a whole have been going better than we imagined that they could. It's been very strange, that Kari and I have been so happy to see Alex in the shape that he's in right now, considering that he's sewn together, with tubes, and wires, and such, but because it has been going better than we hoped, and we know he's on the road to being better, we can't help but be a little giddy once in a while. We know that there is still the chance of things taking a turn for the worse, which sort of sobers us up though.

+ 0 - 0 | § All is well in chocolate town.

Alex came out of the OR at about 1:00PM.  He was still on the ventilator at that time, but was doing well.  The surgeon (Dr. Myers) said that everything went well.  They were able to close the hole in his heart and open up his pulmonary artery using half of his own tissue and half a piece of plastic.  This means that as long as the tissue grows with him, there may not be a need to operate on him again until his teens or twenties.  Not that it matters too much, but they were also able to perform a dilation on his esophagus.

Now, four hours later, Alex is off the ventilator and breathing comfortably on his own.  He is in an oxygen tent until tomorrow morning, but all of the doctors say that he is doing very well, and should continue to do so.  His heartbeat sounds normal for the first time in his life, as opposed to having the washing machine sound that it's had until now.  They are keeping his pain down with morphine (the good stuff), and he is on some heart medication that should be stopped by tomorrow.  They plan to start feeding him again tomorrow.  All in all, things are going very, very well and we are so relieved to have this part done with.  With luck and the help of everyone's good wishes, he will continue to recover quickly.

Oh, and his oxygen saturations are nearing 100% right now!!  His toes are pink!!!!!!!!!

+ 0 - 0 | § he's off the heart-lung machine

We just received the word that Alex has been taken off the heart-lung machine. This means that the heart repair section of the surgery has been completed. They still have to close him up, and take care of some other things. They expect that he will be upstairs in the PICU sometime this early afternoon to start recovery.

+ 0 - 0 | § He's in surgery now

At about 7:30, Alex went off to surgery. They expect that he'll be in until around lunchtime. I doubt that I will be around to post an update immediately when he gets out, but I will try and update the blog sometime this afternoon or evening to let everyone know when he comes out.

+ 0 - 0 | § So far, so good.

This morning's catheterization went pretty well.  The doc says that Alex's pulmonary arteries have grown normally and that his coronary arteries are not in a position to interfere with the repair plans.  These are the two things that they were mainly concerned about.  They also said that it looks like the part of his pulmonary artery that is closed off may go down and contact the heart, which is a good thing.  They may be able to use his own tissue to create a conduit to the main part of the artery.  This would be ideal for Alex because he wouldn't have to have surgery again until maybe into his teens or twenties to have a valve put in.

The only bad thing that happened was a heart block.  When they were inserting the catheter, the doc said that they might have touched a nerve, or the electrical part of the heart, causing the top and bottom halves of his heart to beat irregularly.  They had to stop for about 20 minutes to allow it to correct itself, but it did correct itself and the surgeon doesn't expect any issues from that tomorrow.

So, Alex is now recovering in the cardiac center, where he'll be overnight.  He's sleepy, but overall doing well.  They will take him into surgery at about 7 AM tomorrow, and they said that he'll be there until lunchtime.  If all goes well, he may be out of the hospital inside of a week they say.  We'll post results as we are able...

Wish him luck!

+ 0 - 0 | § Oh well.

It looks as if the snafu has lost a months worth of posts. Luckily, the pictures seem to be fine. Anyway, the general gist of things is we're getting ready for Alex's heart catheterization tomorrow, and his heart repair surgery on Wednesday. This is about the worst possible time for the blog to be messed up, oh well. I hope it'll stay fixed.

Upon further observation, it appears as if only the last week or so's posts have been lost. This is better than I had originally thought.

+ 0 - 0 | § Sorry if things are screwy with the blog

Of course this is perfect timing, but we have been having some problems with the blog because I ran out of disk space on the server. I cleared up some room, and I hope that it'll fix things. But if you get wierd messages like "files don't exist" or something, I'm trying to fix the problem.