Tuesday, July 7, 2009

There is an End in Sight!

The preliminary results of Little Guy's biopsy are coming in little by little. There are some tests that will actually take weeks to get, but what we do know so far is that we have ruled out the really bad stuff. We'll take that. Honestly, after the roller coaster of the mass on his brain and always turning blue with no reason and the fact that we do know for sure that whatever he has is VERY rare, just knowing that the "really bad stuff" is not what he has seems like a real gift. Who am I to look a gift horse in the mouth, right?

We also know this is going to be a long-term illness for him. He'll have to wear his oxygen for several years to come, if not permanently (the results of the biopsy will tell us more about long-term expectations). We still have some out-patient studies to do, and we know to plan on some hospitalizations during the winter. What it comes down to is that he'll more than likely have to be hospitalized every time he gets a cold or the flu because his lungs won't be able to handle any kind of extra work. At least we know what to expect, though, and I'm okay with that.

So, the next couple of days are going to be used to titrate his oxygen levels and make sure he's safe to go home. And then, if all goes well, we should be home by the weekend!!!! I think this calls for some sort of celebration or party or something, but maybe not at my house. Church friends have made it so clean and tidy that I just don't have the heart to invite dozens of people in to mess it up.

Anyway, there you go. Put on your party frocks and meet us someplace other than my house to have a very low-key party that won't work Little Guy up into having to work harder to breathe and jump (carefully) for joy with us that we get to bring our sweet boy home and once again resume some semblance of normalcy. (Was that a run-on sentence?)

3 comments:

Karen Hodson said...

Yeah!! You get to go home! What a relief. How great that your family gets to be together again!

The Laugher's said...

Wonderful..kind of. I am glad you have the chance to go home soon. I hate that you are not getting clearer answers.

Hubby and Me said...

Party at my place!! I am so stoked for you. Love you guys Hugs!!!