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.

September 21, 2007

Tuesday, May 18, 2010


Hi all. Today has been a "most fun" day. (Note the sarcasm.) We had no nurses the past three nights, and family and friends have been helping us to watch Michael. Nonetheless, the reserves are getting a bit low. Michael, per usual, decided to keep Mom on her toes today by having out-of-control reflux, including a fair amount of puke today. No vomit is fun, but it is an extra bit of non-fun when a trach tube is involved, because we have to do our best to be sure he doesn't get anything into his breathing tube. The worst part is the screaming pain he has been in periodically today. Like all reflux-y babies, it is heartbreaking to see ... those big blue eyes pleading with Mommy to make it stop hurting. Mommy, unfortunately, is out of ideas. So, we go off to a new doctor on Monday. This time it is a pediatric GI specialist. Hopefully he can help us get this problem under control so that Michael's poor little tummy feels better and he can eat all he is supposed to without pain or (much) puke.

On a lighter note, when Michael isn't crying, he is usually laughing. He smiles all the time, and that is quite an uplift. It reminds us of why we are doing all this.

We just learned a few hours ago that our approved nursing hours have been extended until October 8 at 16 hours a day. Now if only the nursing agency will be able to staff it.... If not, well, we are open to suggestions.

Special thanks today to the E___ family, for their ever-present support line and implicit understanding (having been there themselves!) Today you were the glue to help us not unravel too far.

Thanks again, y'all. Hopefully we will be able to soon write how much better Michael is feeling. In the meantime, he is napping in the warm lap of Grandma. He is planning on rooting for PSU tomorrow in the PSU-Michigan game, but he has told me that the Michigan rattle from B___ and D___ is still the coolest one he has because it is small enough for his hands to hold. We've told him that when he is bigger he will be grown up enough to have a PSU rattle -- much better.


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