This blog is a chronology of our story and should not be used as the basis for medical treatment or diagnosis. From time to time, you will find links to other websites that we have found helpful, however we offer no guarantees as to the accuracy of these websites. At all times, please use your own good judgment and the advice of qualified medical physicians and specialists.

July 25, 2007

Monday, April 26, 2010


Well, Michael's IV in his leg came out this morning. He is now "tubeless" and is only encumbered by the monitoring wires and by his humidifier. So, he had his first bath in a little tub this morning, and the nurses said he loved it. (All prior baths were of the sponge-variety.) Mom wasn't yet there in time for the bath, but Mom and Dad get to give the next bath on Saturday morning.

The most fun thing about being less encumbered is that Mom and Dad can (depending on the nurse in charge) pick up Michael and put him down without nursing assistance. (Some nurses feel more cautious and aren't comfortable with this, but some are.) He is much easier to hold with only the blue tube and the wires measuring his heart and respiration. Michael seems much happier, too, to be able to be out and about more. He fusses less, and relaxes more.

What next, you might ask? Well, Michael needs to get up on full feeds, but that will be in a day or so more. He also needs to work a bit with the therapists on feeding by mouth to see what he is capable of doing with his cleft palate. This will involve some testing with video equipment and x-rays, and trial and error of different types of bottles. There is more than a little pessimism that he will be able to maintain his full feed level by mouth, but we aren't convinced that he can't. So far, Michael has proven he can do anything he puts his mind to, so why not this? He had some success early on, before the doctors disallowed oral feeding, and we see little reason why he won't tackle this challenge head on as well.

In addition, Michael has to have a few more x-rays and tests on his lungs and other organs. They want to confirm his lungs are still fine. And remember the major episode on the day of the first surgery? He'll still need to be tested to see if there was any visible damage from the oxygen compromise, but Adam and I aren't expecting any.

And then, the doctors have written the order that Mom and Dad are to be trained on the care of Michael and his special equipment. This training will take some time (not sure exactly how much). But, the incredible news is that training is in anticipation of discharge! Yes, discharge! The doctors actually said DISCHARGE! Granted, this is still a couple of weeks away, but we are working on a plan to bring this baby HOME! He has passed all medical obstacles required by his doctors in anticipation of leaving the NICU, and now we are working on what it will take to BRING HIM HOME! (I can't say it enough -- it frankly brings tears to my eyes.)

I'll bet you can't believe I waited until the end of the posting to actually say that. Just wanted to check if you were still reading.


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