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+ 0 - 0 | § All I do is worry!

Today has been a day full of wirries it seems.  Alex started requiring a little bit of oxygen again last night, so they've been running tests to figure out what kind of infection Alex has and what they can do to get rid of it.  He's now on three antibiotics, and they are testing his boogies to see if there are any bugs growing there.  They also asked his cardiologist to come in and make sure that his shunt was working properly.  He said that it was working fine and that he thinks that Alex may be needing some of the diuretics that they took him off of a few days ago, so they restarted that med too.  As for Alex, he seems okay, though I really think that he's tired of all this. 

Alex's grandparents (Jon and Gloria) came to visit today.  It was a pretty uneventful visit, though Jon noticed that, when the nurse pushed Alex's milk into his stomach through the g-tube, some bubbles came into his chest tube.  That got me thinking because the only way for that to happen was that tthe stuff being pushed in was going through the leak in his attachment site.  As a result, I had a talk with one of the nurse practitioners and we decided that his feeds should be gravity fed now, instead of being pushed through, in order to try to avoid so much air going up into his espohagus and possibly reopening a healing leak.  Now I'm worried that the leak has gotten bigger because of the fact that they've been pushing feeds into him for 3 or 4 days now, so hopefully I'll be able to talk to the surgeons tomorrow to see if that is a real concern or not.  I want Alex home so badly right now, and it's frustrating to know that things like these serve to delay that day from coming...and that these things just keep happening.  Grrr....

+ 0 - 0 | § Just a little update...

I apologize if I worried anyone yesterday.  Alex is doing okay...his fever is ranging from about 100 to 101 degrees, but they've started his antibiotics and expect that he'll respond to them.  They may do some cultures of the fluid that is coming out of his chest tube to see if the leak is causing the infection, and what kind of organisms (bacteria, fungus, etc.) are there.  That way, they can target the organism with the right medicines.  The ones that they are using right now work well for the most common types of infections, but not as well if he has a fungal infection. 

His next leak test will be done in 7-10 days...they won't schedule it until next week probably, depending on what the drainage in his chest tube looks like.  They started feeding him a little milk again.  It's only 3 mL every 3 hours (which adds up to about 1 ounce per day), but it will get his stomach used to holding food again and possibly give them an idea if his reflux will be really bad or not.  Baby steps...

+ 0 - 0 | § It just keeps getting better...

Right before I left this evening, the nurse and I noticed that Alex's temperature had been pretty high, so after I left, they did some blood tests.  The blood tests confirmed that Alex has another infection.  The nurse practitioner said that it could be pneumonia again, or it could be a result of the leaking fluid from his esophagus.  In any case, he is now on antibiotics again.

When is this little boy going to catch a break?  Just when we feel like we can see the light at the end of the tunnel, all of these things happen that make us realize that we still have a fight ahead of us even to get him home.

+ 0 - 0 | § He's a leaky boy...

So, there's a leak.  The surgeons said that it's a small one, and that it should heal with time.  They are probably going to repeat the test in about a week, so Alex will keep his chest tube and all of the other tubes.  One good thing is that they are going to start feeding him through his g-tube a little bit to see how he handles it.  Yeah, more waiting!

+ 0 - 0 | § Out with the 'I' word...

Alex is doing very well since the vent tube was taken out.  He's been awake more and much happier than he has been in ages.  The resident in charge of his care said today that Alex was a very pleasant baby...something that we haven't heard at all from the docs; they usually call him "irritable".  They are planning to do the barium contrast study (leak test on the attachment site) tomorrow.  Dan and I are trying not to get our hopes up because the surgeons said that it's likely that he'll have a leak.  If he does, then they'll just wait and Alex will spend another week or so with his chest tube and tube in his nose.  If he doesn't, then the chest tube will come out and we can start feeding him by mouth for the first time.  Just another hill on the emotional roller coaster....

I'll post the results when I know them.

+ 0 - 0 | § Why are they brave?

Natasha asked shy we call the nurses brave when they allow us to hold Alex these days.  Well, some of the nurses are afraid that the chest tube will dislodge or fall out, or when he was on the vent, that that tube would fall out or Alex would start alarming.   Other nurses will pin things down as much as possible and believe that it's better for Alex to be held and that those benefits outweigh the risks of things falling out.  It's not that one nurse is better than the other because they all do good work, but some are just "braver".

+ 0 - 0 | § a nice surprise

When we called on the way up tonight, the nurse said that Alex had been extubated. That is really great news.  Apparently, the surgeons had said that they were waiting to do the leakage study on the surgery site until he had been extubated, and the doctors were waiting to extubate him until after he had had the leakage study. Luckily for us, a nurse figured out that this was happening, and she got the two groups to talk together, and they decided to extubate him. Alex has been much happier, now that he doesn't have his breathing tube in anymore. However, we still aren't allowed to hold him for now, because he has his chest drainage tube in from the last surgery. Well, we aren't allowed to hold him unless we get a brave nurse that is.  All in all, it's been a good day.

+ 0 - 0 | § Catch-22

Kari and I are anxious to get Alex off the ventilator, but that might not happen for a little while. It's sort of a catch-22 situation right now, because he's on the vent right now, which he allows to breath for him, because it's in, and because the vent's breathing for him, they won't extubate him. We also have another lose-lose situation, because we can't really hold him, because of all the equipment, and when we're there he knows it, and knows that we're not holding him, which makes him upset, making him fuss, which makes the tubes irritate him more, which in turn, makes him fuss more.

The only thing we can do right now is try and be patient. It's just kinda hard.