And just like that, we’re home. All five children are tucked snugly in their beds. We snuggled and hugged and kissed and shared stories and laughs. We read bedtime stories and ate dinner together. Emily received so many squeezes that by bedtime she was pushing her brothers away. Typical. She begs to see them when we’re at the hospital. I think she doesn’t want them to get too high an opinion of themselves 😀 She and Sophia decided to sleep in the same bed to be closer to each other. That lasted all of 20 minutes before they had had enough of each other and ended up in their own beds.
So after a successful Broviac removal yesterday, a switch to oral rather than IV antibiotics, plus a completely rebounded little girl, Emily’s doctors decided she could go home today. I was a little taken aback, as I thought they wanted to monitor her reaction to the oral antibiotic longer, but they assured me they wouldn’t let her go home if they didn’t think it was okay (of course), and we were all completely done with the hospital, so I didn’t put up too much of a fight 🙂 She had one last lab draw and then her peripheral line was taken out. And we got to bring her home without anything attached to her!
Now Jason and I need to make the decision between placing another Broviac or inserting a Portacath for her continued treatment. We have researched, talked to the doctors, the nurses, the surgeons, and to other families with central line experience, and we’re still not sure which we want to go with. The Port would allow a lot more freedom for Emily. She could take baths and go swimming, and we wouldn’t have to worry about her tubes being pulled or getting caught on something. The downside is that each time she’s accessed she’d have to get a poke, since the Port is under the skin. However there is a numbing cream that helps, and everyone we’ve talked to says most children don’t feel a thing. The bigger downside is that she’d only have one line to run meds/fluids/etc. through, so if certain meds aren’t compatible, one would need to be stopped while another runs. Or she’d need to get a peripheral line placed in order to run two things at once. Now, this isn’t even something we’d encounter unless she ends up back in the hospital again. And we’re not expecting to! The Broviac seems easy to us, since we’re used to it. She can have as many things running as needed, since there are two lines that don’t intercept each other, and she’s already used to no swimming and shallow baths. But it would be nice to not have that worry of tubes connected to her heart hanging outside her body. Regarding risk of infection, which is my number one concern, both the Port and Broviac carry the same risk. That’s just something we’re not going to get away from, unfortunately. We have some time to make the decision. Our appt with her oncologist is scheduled for Monday Aug 26th, and her surgery is scheduled for Friday Aug 30th. In the meantime, we’re going to enjoy a central-line-free child.
I originally sat down to share my emotions, thoughts, and feelings regarding this latest hiccup in Emily’s journey, but once again I’ve chickened out. I don’t know why, but I have a hard time sorting it all out and putting it down on paper, so to speak. I can say that this past week feels completely surreal. Less than a week ago I was asking the doctor if Emily was going to make it, and now we’re back home as if nothing happened. I think that in my own mind I gloss over these serious events as a coping mechanism, and when they’re over, I file them away and almost forget they happened at all. I am always surprised when a doctor or resident recites part of Emily’s file and comments on how difficult her journey has been or how many close encounters she’s had. I’d like to think that it’s because my faith is so great and I’m staying positive, but the truth is that it’s much easier to deal with this whole unsavory situation when I don’t think about it at all.
And now I feel completely uncomfortable for sharing that much, so I’m going to change the subject and share some cute pictures of Emily 🙂
And Emily “reading” to Grammie
Another thing I wanted to share tonight is my gratitude. Thank you everyone who prayed, visited, brought meals to my family, and watched my children. This past week was an emotional one, and it was such a huge, huge blessing to not have to even think about how my family was faring without me. They were so well taken care of, as were Emily and I, and you all have my deepest gratitude.