I have turned into a full bah humbug this Valentine’s Day. Every year I make homemade cards for my family and bake a yellow heart shaped cake with chocolate frosting, but this year, I’ve got nothing. Aside from the fact that I am exhausted and worried about Tiara, I just have no desire to take…
daily life with tiara
Still stressed….
Well, I am writing this on Tuesday night and nothing much has changed. I am still a bundle of nerves and something is still wrong with Tiara, yet I don’t know what it is. I took her to the doctors on Monday and they spoke to Nephrology and ordered stat blood work. The blood work…
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…
25 hours without sleep!
As I write this it is Sunday afternoon and we just woke up from a 2 hour nap. A nap, how nice they must be catching up on their sleep. Well, we are not exactly all caught up since Tiara did not sleep for 25 hours!!!! No I’m not kidding! This has never ever happened…
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,…
Update on Tiara 1/25/14
Let me start by saying that if you want more current updates on Tiara please feel free to friend request me on Facebook(tiffani Whitaker goff) I tend to update my personal page more than anything else. Now for the update. Friday afternoon we decided she was struggling too hard to breathe so they intubated…
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…