top of page

January 5, 2019

Now that the swelling is going down, we're getting our first look at her... much thinner body. Her ribs have been hidden beneath the vest for so long. This is what 7 weeks of puking up everything that's not IV fluids will do to a fat baby... =(

Her vomiting has been good today, though she was off feeds for a portion of it since she went down for another MRI. They restarted the feeds just a bit ago and will see how she tolerates them. They are talking about possibly putting in another feeding tube below her stomach, directly into her intestines - that way she won't puke anything up when she's gagging on the mucus. Ugh. I don't want them to cut her open anymore. It just doesn't stop. I mean... Right now I count 8 incisions: back of throat for tumor removal, top of spine for fusion, stomach for fat graph, thigh for fat graph, stomach for g tube, throat for trach, top of scalp for external shunt, side of scalp for internal shunt... and that doesn't count all her halo holes, pic lines, ports, and her million IVs. Every one of these cuts is more pain for her to heal from, and more chance at infection. And we've already seen what an infection can do.

Her mucus is clearing up and so she's gagging/vomiting less. She's only had to be suctioned 2-3 times today which is a major improvement. At her worst, she was having to get suctioned like every 10-15 minutes. I believe they're going to give her another 24/48 hours to see how she does with keeping the food down. I really hope she's done with the operations.

Neurosurgery made a few decisions today regarding her PT: They do not want her sitting up or being moved from the bed for at least a week. So they are cutting her PT sessions down to 2 days this week. They don't believe there is anything wrong, they just want to be super careful with her delicate neck - they don't want her to go full-tilt the first week after getting the halo off early. They have decided to swap out her crib with a bed though, so Reed will be able to cuddle with her there, and she can be kind of propped up against him during the day.

She's been very sleepy again. More anesthesia to get the MRI done, and it takes her hours and hours to come out of it. She's been very lazy and unresponsive (not in a concerning medical way). The nurse explained that many times, kids with "lots of neurological" stuff going on at once tend to get less responsive; their reactions almost muted. It's not that they can't move, it's that their system is just overloaded so they don't. The nurse showed us that if she pinched Julia's finger in a certain way (she was nice about it!), Julia was able to pull her arm back. So she CAN move... she just doesn't want to right now. Of course this was her right arm - still no movement out of the left. The nurse said this sluggish response time is kind of expected given all that's happened, and generally it does get better with time.

I told Reed to take pictures once he's snuggled in bed with Julia. I really hope that gets to happen! Last I heard they were still trying to locate a free bed and get it moved in. She's going to be so much happier with him so close to her =)

681 views0 comments

Recent Posts

See All


bottom of page