Thursday, April 26, 2012

Sticking around a few more days 12:20pm April 26th

It has been a busy morning.  First of all he did really well yesterday on his feeds.  From 6am yesterday to 6am today, he took in a total of 512ml of fortified breast milk.  Surprisingly though he managed to loose weight, we only weighed him in at 3674 grams, down 26 grams for what we weighed him at yesterday.

OT stopped in this morning before rounds to assess him.  He is doing really well with his visual tracking and she just gave us a few exercises that we can do with Owen especially in the sideline position to promote the use of his arms and work more on his tracking.  While OT was assessing him, one of the nurse practitioners from the Interstage program came in to talk to us.  She gave us some consent forms to sign for research programs related to babies with congenital heart defects where they just use the data from the interstage program.  We have completed all that is required of us before discharge except the car seat test so far.  The Interstage nurse also gave us copies of his last echo and chest x-rays to keep in his Interstage binder so that we can give them to his cardiologist in the Fox Cities once we get that far.  We asked, and you have to have specific programs that they only have in hospitals (and not even all hospitals) to view the files, so sorry to those of you who thought it would be cool to look at Owen's echo of his heart, but it isn't going to happen (I know, I was disappointed by that too).

Now for the moment you have all been waiting for.  Today is that day that we should have gotten our official discharge date of tomorrow.  I say that we should have only because at rounds today they didn't give us the go ahead, they are going to be keeping him here a few more days.  Although Owen is technically doing great at this point, his blood pressures have been a little high lately.  They have been toying with the idea of increasing his dose of Captopril for a couple of days now because the dose he is on right now is lower than what they usually send kids home on.  They finally decided that it was a good idea to increase his Captopril and they don't want to go messing around with his medications and then just ship us home.  They want to have a few days of observation on the new medication to make sure that everything is stable and they have the desired affect.  So, we can't go home tomorrow, but they are hoping that we can go home Sunday or Monday.  We were so looking forward to going home tomorrow, but we totally understand that they want to observe him for a while at the new level of medications.  It would totally suck if they sent us home only to have us come back down next week to have him readmitted to the hospital because he isn't reacting well to the new dose.  I hope this time the discharge date will stay where it is, we are totally getting sick of sitting in the hospital all day every day, for a month, it gets really tiring.

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