Thank you for your patience, this is a long haul

When a Dr thanks you for being patient, when you are the least patient person you know, you must be doing something right?!?!?

Tuesday was the swallow study, it was improved but not enough to discontinue thickening her liquids. This isn’t a big disappointment as it wasn’t the reason for the surgery we were just hoping the surgery would have helped it and it may over time but at the moment not enough. She also got her mainline IV taken out on Tuesday and was allowed to begin eating solids again.

On Wednesday she was moved from the PICU to a regular floor and got her feeding tube removed. She is eating well and seems happy to be able to. She has also started smiling and laughing more, which helps us and the Drs and nurses too.

On Wed night they replaced her IV and this morning she had a follow-up bronchoscopy (bronch) to see how her LTR was healing. A couple of nodes (common with the procedure) developed just under her vocal cords not on the graft. The Dr. had to treat them (i.e. cut them) and we have to remain at the hospital until tomorrow. It also means she will need to come back and check back into the hospital Monday for another bronch. She is also getting a dose of steroids for the next 5-7 days. Given the situation and the need for Monday we’re not sure we will actually go home this weekend.

So deep breathes and one moment as a time, as I try to muster all the patience I can.

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