Thursday, June 14, 2007

Home again.

Well, we are home. Harlie is still not herself. But hopefully a good night’s sleep in her own bed will help.

As far as what we learned today…I spoke with the pulmonologist and he showed me her CT scans. The good lung is in the middle and it is a small patch. He is guessing that's about 20% of that lung. Unfortunately, when comparing the two CT scans, it is clear that the mass has gotten larger since her birth. It is in her lower and upper lobes, which is not characteristic of a CCAM (which is what was diagnosed a year ago). The other unusual thing is that CCAMs either stay the same size or shrink. They typically do not grow after birth.

So, what is it you ask? They don’t know. So, they are definitely going to have to remove the mass. Then they will biopsy it to find out what it is. The doctor said that normally you can remove one lobe at a time since there is a clear separation. However, there is a chance that the mass cannot be “neatly” separated from the good lung. Which means that they might have to remove the entire lung.

The team in DC will be receiving all the information in the next few days, but one of the main docs is on vacation next week. So, they are thinking that they will not be able to have any answers to us until the last week in June. Basically, all we are waiting on now is when the surgeries will be. Dr. Jonas is her heart surgeon and he will also be removing the mass.

Now that I've had a little time to begin to accept where we are, I am ready to move on and get this behind us. So, hopefully we won't have to wait too long.

At this point, Harlie is back on O2 – full time. The second you take away the oxygen mask, her sats drop and she turns color (blue). Her x-rays after the heart cath were great. So, no major problems in her left lung as far as fluid build-up or anything. Hopefully, we’ll find the answer to this soon. The required O2 is definitely a downer. Makes her way less portable among other things.

We got her new helmet today. It just needs a minor adjustment and we are scheduled to have that done tomorrow. So, hopefully we’ll be able to make some headway on that now. hehe, pardon the pun.

Tomorrow will make one year since we learned of Harlie's heart defects. It has been the longest year of my life. But when she smiles at me, it all seems to melt away.

Well, that’s it for tonight. Thanks for all your support.
Take care,

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