It’s been a relatively quiet 2 days. Let’s start with Friday. We got the cough to start calming down the fever back under control. She got some much needed quality rest and a great visit from Mimi and Bapa.
Saturday was another good day, a bit busier but still another good day. We got her off of all of the breathing support and down to just a couple of neb treatments a day. The cough continues to improve, she got to take another bath tonight and is now all shiny and clean. Bath times are great because they calm her down quite a bit. Plus Olly got to see her sister in person today. This was good for both of them.
Seizures are still happening a little more than we would like. We also had some blood
pressure issues today, again nothing major but something to keep an eye on. The biggest thing to come from the last two days is that we are going to change her G-tube to a GJ-tube. Basically the G-tube goes into the stomach and GJ-tube goes into the stomach (g) and into the intestine (j).
Her feeds will all be done through the J portion. This will help her keep her food down when she is sick and help protect her from pneumonia and lung infections. The G portion will still be used for meds. Overall it will be a great thing for Olly and for us to help keep her safe and healthy.
The change in feeding tube likely won’t happen until Monday so we are looking at staying in the most expensive hotel in Minneapolis until Tuesday or Wednesday as we will need to get her feeding levels back up to where they need to be and make sure she is tolerating them.
Last thing I will share is something I posted on Facebook a couple days ago. “I wanted to share something one of Olly's doctors said yesterday that I keep forgetting to add to an update.
She commented that we must have an amazing support system. It was in response to something that happened yesterday and how quickly I was able to change plans and know that everything at home including Mara and the dogs were taken care of.
I couldn't agree with her more. You are all amazing from the people that have donated to the people who have brought supplies to the hospital to the people who text to the people praying to the people who hit like on our posts.
Please know that we see you, we feel you, we appreciate you, and we love.
We couldn't do this without all of your love and support.”