No more O2

Well, this weekend was very busy for Harlie. The BEST thing about this weekend is that for the first time in Harlie’s life – she is NOT ON OXYGEN!!!

She has gone 2 full days on room air and maintaining her sats in the high 80’s and low 90’s (which is where they want her to be). I know it is hard for most of you to know what I’m talking about here – but this is truly life-changing for us. Of course, as I write this, her alarm is going off because her sats are 76 and her respiratory rate is 120 (which is too high!). Anyway – she was weaned off the vent and she is now back on her trach collar (which is what she has on at home). Hopefully, in the next few months, we can start to wean her off the trach collar when she is awake. Now THAT will be incredibly freeing!!! But, I’m getting ahead of myself.

They had to put in a new central line. The blood cultures showed that the central line in her left leg was infected. So, they had to put a new one in her right leg. The doctor that did it was the same doctor that did her heart cath back in February. When they put the first central line in, it took under 30 minutes. For her second one, it took an hour and a half!!! Her veins have really been through it – causing scarring that makes putting in a line extremely difficult.

They started the Portagen again (special formula). Hopefully there won’t be any more drainage. And hopefully, her belly will tolerate it. At this point, we have to:

1. Wait a few more days for the infection to stop showing up in her blood cultures. (I think they said she has 2 or 3 more days of antibiotics).

2. Make sure that the damaged lymphatic vessels have stopped leaking chyle.

3. Make sure she’s tolerating her feeds.

4. Get a gastric motility or modified barium swallow study done.

Once all that is done, we can take her home!! Overall, we are very pleased with her progress this weekend. We are definitely heading in the right direction. Well, that’s pretty much it for tonight. I hope you are all well. Thank you again for your continued prayers and support.

Take care,
Christy