I'll spare you all the details of "plans" constantly changing. You definitely have to ask a lot of questions and stay light on your feet while in the hospital. There have been lots of people to talk to - ENT, wound care, ID, cardiology (she got an echo while she was here). And I got to see Harlie's social worker and spend some time talking with her. It is SO good to talk to someone who understands this hospital life.
Anyway, I'll summarize with what I know at this point...
There's no way to tell where the infection is exactly (whether it is on the skin only and/or if it on her joints). So, we treat with IV antibiotics and wait and see what happens. The length of time she will be on these IV antibiotics will depend on how the wounds look. If they heal and go away, we stop treatment, and then wait and see what happens. If the wounds come back, then that tells them that the bacteria is on the joints.
I suppose if the wounds don't heal at all, that could mean the bacteria is on the joints as well. So, we'll just have to wait and see.
Right now she is on Unasyn and she gets it every six hours (she was on Vancomycin, but they changed it to Unasyn last night). So, they are trying to discharge us in time for me to drive home and be home by her 3pm dose. A nurse is scheduled to come to our house with a week's supply of the Unasyn and make sure we know how to administer it. I think this is her 3rd PICC line, so I remember how to do it. It is now 11am, so we'll see how this works out.
Yesterday was me and Tom's 19th wedding anniversary. We will have to celebrate later. Harlie put the date on her calendar on her tablet. So, first thing yesterday morning she said, "Happy Anniversary!" She's so sweet. Later in the day I got a text from Murphy - i wanna pierce my ears. Insert eye roll emoji. Sigh... parenting is so fun sometimes. I mean, does he even know we are in the hospital?! Haha!
I know she always looks like she's all smiles, but it really isn't like that all the time. She had a really rough night Monday night. She was so sad and seemed so lonely. This hospital life is SO hard. I watch her walk gingerly to the bathroom, things connected, and she is way too experienced for her age. It makes me so sad. I feel lonely, and I have friends to talk to, friends who love me. She doesn't. I really need to figure out a way to get her connected to some other kids.
Last night my friend Mona came to pick me up and she took me to dinner. We had a great time with lots of laughs, great food and wine. Thank you, Mona!!!
I have to be short because I need to pack us up and take some things to the car so I'm ready to walk her down as soon as they are done with the discharge stuff.
Oh no. Harlie's nurse just came in to say that she heard there was a snag with her home meds. Yesterday I heard all was fine and set up. Ugh. Not sure what's going on. Hopefully that is just miscommunication.
Well, thank you for all your sweet, supportive, encouraging comments on Facebook/Instagram. We appreciate you all and your willingness to go through this with us more than you know.
Much love,
Christy xo
