May ..already :-)

WOW!!!

What a month :-)

I am not quite sure where to begin. Zachary is enjoying going to school several days a week. He has a nurse with him at school, so we can all breathe and know he is safe.

Weight wise Zachary LOST again 1.4lbs this month. However, he is tolerating a stronger formula. This formula helps give him more calories in the same amount of volume he was taking before. It has been very frustrating recently when he is vomiting (which he shouldn't do) and loosing his feeds. We are still working on a comfortable amount that will give him his calories, but not push him to hard.

There is NOT a month that goes by without a visit to our favorite, Santa Clara Kaiser, and this one was a big visit. Zachary started to "bleed out" from his central line, and not from the tubes. He was actually bleeding out from the spot that enters his chest. I drove to Santa Clara and his nurse applied the pressure to stop the bleeding. We were told to drive him there, and only call 911 if he was bleeding out and the line was out......the line was in, so I drove! By the time we reached Santa Clara the doctors were ready for us. Zachary was taken into surgery later that night, and we weren't sure if his surgeon would be able to find another vein. The GI doctor told us that since he had the 1 pound gain in April he didn't want to "pull the line." So with that being said, the surgeon found another "weaker" vein and put a new line in. We will see how this new line works. She did say if this doesn't work we won't have anymore options for a central line.

And....the good news is that Zachary can handle this stronger formula on the small volume, but that still means he isn't getting the hydration that he should have. So, even though he is improving in his calorie intake, the fluid intake is low. Which means that there doesn't seem to be a way for him to survive without the central line at this point.

All in all I wouldn't say he's better or worse. Even though he lost the weight, is vomiting, and had surgery again----he's still here :-) We are now on weekly weight checks and hoping that things improve, but for now we will take what we get!

Thanks again for all your thoughts, comments, prayers, donations and support. This roller coaster doesn't seem to end, but at least we have company on the ride!