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Kari (I love long weeke…): Some of my latest planted seeds are starting to com…
Natasha (I love long weeke…): The three year old thing is not a problem, was just…
Kari (I love long weeke…): I wanted to convey that the child was almost three&…
Natasha (I love long weeke…): I think the age was 2.7487, but it was rounded to 3…
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wiley, d (I love long weeke…): Dan, Kari and Alex: So great to hear of the success…
Kari (Happy happy tree …): I agree with you! I’ve been completely paran…
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+ 0 - 0 | § Happy Smiley Boy

As Kari promised yesterday, here are the pictures of Alex being in such a good mood yesterday. As usual, click on "more" below to see them.

(more)

+ 0 - 0 | § All smiles...

Alex is such a cute little boy.  When Dan and I arrived this afternoon and picked him up, he started grinning like a fool.  It was just wonderful to see him so happy.  We will post some pictures when we get a chance to transfer them.

In other news, Alex is now on full milk feeds and off of his IV nutrition and medications.  They may even take his IV out tonight if a dye test in his j tube goes well.  (They want to make sure that the milk isn't going up into his stomach and esophagus and out the leak.)  He's also been off of oxygen entirely for the past couple of days.  Now we just wait until the leak heals...

+ 0 - 0 | § Moving day...

Alex has a new plot of NICU space...he finally signed the papers and closed the deal on a spot with a parking garage view and less in the way of street lights and wind.  In other words, he's now at bed 7 instead of bed 9.  The NICU thinned out significantly between yesterday and today and we took the opportunity to ask them if Alex could be moved to a darker, quieter spot.  It only cost him a few doses of sedative.  (Just kidding, of course.)

I guess today wasn't such a bad day.  He's getting milk now in his new, improved gj-tube, and they expect that he'll be off of the IV fluids tomorrow sometime.  They are also planning to stop his antibiotics after tomorrow, so he won't be on any IV meds for a little bit.  They'll probably leave the PICC line (his IV) in, but he won't be tethered to the pumps as much.  Perhaps his new food will help him heal a bit faster.  We'll see...

+ 0 - 0 | § Never the easy way...

One step forward, one step back.  Alex got his j tube today, though they ended up just modifying his current button instead of popping something else in its place.  However, when tehy took him down to Radiology to do the procedure, his chest tube came out.  So, when the j-tube was in, they had to take him for the leak test that he wasn't supposed to have today in order to find out whether or not the chest tube needed to go back in.  Long story short, he's still leaky and they had to put a new chest tube in.  The good news then is that they can now feed him real food.  The bad news is that he still leaks (not unexpected) and he had to go through the stress of the surgeons putting in a new chest tube.  I hope that Alex gets over his desire to do things the hard way...he's going to give me an ulcer!  (But he's still soooooo cute...so I can't be mad.)

+ 0 - 0 | § Plans change...

I had a chat with Alex's current attending physician (a.k.a. boss man).  After finding out that feeding Alex through his g-tube wasn't working, they were forced to go back to IV fluids alone.  However, they want him to get more calories than can be given by IV, so we've decided to convert his g-tube button into a gj-tube.  A gj-tube is a combination of a g-tube (going directly to his stomach) and a j-tube, which goes through the stomach to the entrance of the small intestine.  This way, they can use the j part of the tube to feed him milk and wean him from the IV nutrition.  The procedure should be fairly simple...they'll just pop out his button and install the new device.  They are planning to do it tomorrow instead of doing a leak study as planned.  The doc and Alex's surgeons (and Dan and I) all agree that the leak study is kind of pointless right now because we're sure that the leak is still there.  Why annoy him with another procedure that isn't going to help him?  They'll do the leak study next week if the drainage in his chest tube stops and an air bubble outside of the entrance to the chest tube goes away.  (They'll check the air bubble on x-ray.)

All in all, the doc said that Alex will be at the hospital "for the long haul".  It may take another 2-3 weeks for his espohagus to heal, and who knows what will happen after that.  Our dreams of going home by Christmas are fading at this point, but I guess we can still have our Christmas when he does come home.

As for Alex...he's doing pretty well these days.  Since they started his diuretics again, he's been needing very little oxygen, and he seems pretty comfy most of the time.  He still loves being held, and people-watching is one of his favorite activities.  The nurses are always stopping by to say hi.  I think he likes older women!!

+ 0 - 0 | § A plan for now

The doctors say that they will do another leak study on Wednesday. We're not too optimistic about the results of the study though. They did a test with dyed blue milk that they put into his g-tube, and blue milk came out of the drainage tube, so he is refluxing, and it is going through his leak. Yesterday and the day before, his leaking was better, but the day before that it was leaking pretty bad, because the amount of drainage was pretty high.
We're glad that my dad noticed that there was leaking when he was being fed on Saturday, because that prompted them to do the dyed milk test early. Because that observation, and the dyed milk test, they know to put things into his g-tube very slowly, so as not to push air or fluid out of the leak in his esophagus.
I'm sure that the staff at Hershey are very capable, but noone's perfect and can notice everything. After all, medicine is not an exact science. That's why I'm glad that we have Kari, me and others who pay attention to pick up other details that they might miss.