Just another update...

Well, luckily, all is calm here. Yesterday was pretty uneventful. The chest tube continues to drain. Hopefully that will stop soon - she hasn't had anything in her belly for days now (other than a couple of meds). She is on Fentanyl to keep her comfortable because they say that those chest tubes can be very painful. She hasn't smiled in a few days, which feels like an eternity to me! Yesterday she looked absolutely pitiful. But this morning, she looks a bit better - still not smiling, but for some reason I think she must feel a bit better. She actually put a toy in her mouth this morning (yesterday she wouldn't even grab it). She had a fever this morning, they gave her some Tylenol, which she promptly threw right back up. I was comforted by a little “normalcy” for her. haha

I spoke with her cardiologist this morning. He reminded me that treating chylothorax can be a long process. Having a diagnosis certainly helps, but that doesn’t make the treatment any easier. (Don’t forget that we are still fighting the viral pneumonia as well!) So far, they have tried treatments that work for most patients. As usual, she has to be UNusual. So, they will continue to try other treatment options until one works. This is why it can take a long time to fix. And, in case you are wondering, a long time can mean months. Yes, months. The longest he has seen took 6 months. I would not be surprised if it took Harlie 6 and a half months, just so she could break the record. Hopefully she’s not that competitive (like her Nana). :)

So, basically, we are expecting her to be here for a few more weeks. Hopefully the next week or two will be good ones with a lot of progress. If not, they will have to put in a more permanent IV (a port-a-cath, most commonly used by cancer patients) and a chest tube that is re-inserted into her stomach so it can constantly drain back into her body for re-absorption. Hopefully, those things won’t happen, but if that’s what we’ll need to do to get her back home, then so be it.

Oh, here’s a funny story for you…I spoke with someone about Saturday’s scare. She said that she would look back at the monitor’s history to see what kind of alarm was blaring (was it in panic mode and still being ignored) and how fast her sats dropped, etc. Well, a nurse finally noticed that they had Harlie’s name misspelled in the computer (they had Holter instead of Holton) and on Saturday night, she corrected it – which ERASED all the history. How convenient. I told her it looks like a cover up to me. :)All joking aside, she is handling the matter with all seriousness, which I completely appreciate. No one wants anything like that to happen again, that’s for sure.

Also, I want to take a moment to thank all of you that have taken the time to come and visit us at the hospital, bring us meals and goodies, etc. We have loved and appreciated everything!

So, thank you, thank you, thank you!!!
Love,Christy
PS, Tom added some photos in the Family Album.