December 7, 2018

Julia had a pretty good day today. She's comfortable. She still has a fever, but all of her cultures and blood work have come back negative. Her chest x-rays look decent, but they said there is one part of her lungs that is mostly blocked by her vest, so they can't get a clear image. There is a chance there is a particular infection there, so they've tailored her antibiotics to target what that infection would be, just in case. We're hoping to see a drop in her steady fever soon. Other than that, her heart rate has been pretty low (good) today - it's been sitting in the 140s, which is much better than the 170s where it's been. She's getting more used to the suctioning, so she only protests for a few seconds before opening her mouth. All of her surgery locations look great.

I spoke for quite a while with an ENT doctor about the trach. I'm much more confident now in the decision, same with the g tube. Everyone is hopeful that it is a temporary solution, and that once she regains her strength, it might be removed. Possibly even before or at the same time of her halo removal in ~3 months. Obviously they can't guarantee anything... she hasn't been awake enough to do full testing after her surgery and who knows what side effects she'll have to chemo. But it's not being put in, currently, as a permanent solution. Since it will be in, they were also saying that makes them feel a lot better about any possible emergency airway situation, as their typical oxygen mask doesn't fit with her head gear. So that's an added bonus. The ENT doctor said she will most likely still be able to talk (she said "most kids do"), and there is a good chance she'll still be allowed to eat, if just for pleasure, with most of the nutrition going through her tube. The speech therapist will be heavily involved in Julia's post-trach care to see how her swallowing is going with all her surgeries. So the eating is TBD. Honestly... I know how important nutrition is while fighting cancer, and I'm actually happy about the g-tube. It was a battle to get my dad to drink a veggie smoothie while he was in treatment... how convenient to just be able to pump your stomach full of what you need! And I'm very excited to be able to see her beautiful face without all these tubes. (I am NOT excited about learning to care for a trach, and having to replace it myself. We will get a ton of training... but I really really really hope she doesn't come home with it so we don't even need to go there.)

As far as comfort, they turn her regularly, just to get the pressure off one spot for too long. We all give her massages, rub in lotion, rotate her feet and hands, stretch her legs, etc. Everyone is very aware that she's probably uncomfortable and really tired of laying in the same position, so we do what we can around all her bodily connections. The nurses take such wonderful care while bathing her and washing her hair. Her hair was in a cute braid today with a pretty white bow and matching hair tie. And she's flinching less and less during diaper changes so I think the spine is healing and the nurses are getting better at moving her in ways that don't cause discomfort. She's trying to talk, but she can't make any noise so we don't really know what she wants. It's clear (to us) when she's trying to say mama or dada or no, but she was attempting a whole lot of stuff that we were just clueless on. She was getting frustrated at one point. We assume she's asking for food. She's obviously fed well through her feeding tube, but she hasn't actually eaten in over 2 weeks now. She probably wants a banana or peppermint patty at minimum!

Brother came down for a visit today and she seemed very content with that. She was getting a little jealous though when Reed would be paying attention to Gabriel elsewhere in the room. She would point in his general direction, and then hold up her thumb (that's "daddy finger" if you know the nursery rhyme). So even though she can't talk, she was making it CRYSTAL CLEAR that she wanted her daddy's attention!

So the plan is currently for the trach / g tube early next week, with chemo starting first thing the following week. So far she's remaining stable, so that's all we can hope for until we take more steps forward.