As the whole world is freaking out about being isolated at home, I have returned to a place I once knew well. Isolation, being stuck at home, living in a hospital, not being able to attend functions because your child and her behaviors aren’t welcome or not being able to leave the house because you…
hospital stays
I miss it there…
Last week I was driving to Trinity’s school volleyball game which was being played at a Catholic school in Orange, when I saw it. As I was on the 22 freeway heading towards the school, I saw the big red building coming up on my left. A place I used to spend a lot of…
My Earthly Journey with Tiara has ended, she is now in heaven…
My middle baby, Tiara Jeanne Goff passed away from complications related to Tuberous Sclerosis at home on January 15, 2015, surrounded by her family. She was 16 years old. We placed her on hospice December 31, 2014 but I made it sound like a positive move to those who follow me on Facebook. I was…
Her kidneys still aren’t behaving themselves!
I pretty much did nothing this weekend except worry about Tiara and take care of her. Tiara has been very quiet and seems to being having lots of seizures. I kept meaning to email her neurologist to see if she thought we should increase her medications while she is still recovering and I finally got…
Feeling a little overwhelmed…..
I haven’t written a post or gone on Facebook since we got home from the hospital on Tuesday afternoon. Why? Yes, I still love you all, but taking care of Tiara at home is a huge job. I was so happy to get home, I almost forgot how hard it is after a long hospital…
Good news!
I skipped my Monday post as I was a total basket case. I don’t really want to relive what happened Sunday night but here is the reader’s digest version. After not sleeping for 25 hours the nurse thought it would be a great idea to wake up Tiara at 2am and make her cough. I…
Tiara update 1/29/14
I know I said I was going to take a few days off from posting but I changed my mind. I just wanted to reflect on the dinner I had last night. Every Tuesday a free dinner is provided for the families who have children in the icu. The dinner is donated by a restaurant,…
Tiara update 1/27/14
Today hasn’t gone as well as expected. Before rounds last night Tiara spiked a fever and they said she couldn’t have Motrin because of her kidney issues and the blood thinners. This really upset me because Tylenol does nothing to help her fevers. Then the docs decided she didn’t need her lasix drip any more,…
This whole thing sucks!
Not really in the mood to blog but I know so many of you care about Tiara, so here is the update. Just met with the doctors for rounds and they said her lungs are almost whited out like last March and she is getting sicker. They would like to intubate her now but will…
Tt rocked the stomach flu!
Our whole family had a great Christmas, especially Tiara. Every morning she would wake up and say “good party, fun, fun.” Saturday I decided to clean up all the decorations because Tiara was tired and really not wanting to do much so it was easy to quickly put everything away. Trinity was at a play…