I have to say I am pretty shocked at how totally exhausted I am. The great thing about being home is that you get to see your family, eat good food and sleep in your own bed BUT now you don’t have any nurses to help you. As of last night I had already changed…
daily life with tiara
We are HOME!!!
We busted out of the hospital on Sunday afternoon after I pretended Tiara was eating, drinking and able to breath room air. I started planning our exit on Saturday night and forced Tiara to take part of her meds by mouth even though she would rather have them put down the NJ tube just so…
Sleepy Saturday …..
Well, late yesterday afternoon we were moved to the dungeon on the 2nd floor. We were greeted by few nurses who remember Tiara from January and they were very excited to see her again. The one nurse, Debbie, saw Tiara and said “ I’m trying, I’m trying”. Tiara is rather famous for that phrase and…
No more Dialysis!!
Another great day on the Tiara front. After a few large diapers the Renal team decided she didn’t need anymore dialysis. Yay, so happy! She has yet to eat but has been drinking everything in sight. They reduced her oxygen to 3 liters and put her on the nasal cannula which it the last step…
Still more improvement…
Today was another good day. She urinated enough that they decided to skip dialysis today and her creatinine was back in the normal range, which is a huge improvement. Hoping and praying they are going to move the dialysis machine out of her room tomorrow and we will never see it again! She was…
A good day!!!!
Today started out great because when I woke up I realized they had decreased the ventilator settings during the night and they were the lowest they have been and her oxygen levels were still good. I knew it was the right day to take her off the ventilator. I walked over to the bed…
Tiara update, she is still on a ventilator….
So once again Tiara wasn’t able to get extubated today. We finally got into her new room at 1am last night and I was woken up at 6am for x-rays to learn Tiara had spiked a temperature to 104 degrees. What? Now what is going on? The nurse cultured every line again but nothing…
Tiara update, Shingles, really?
Shingles? Yesterday the infectious disease doctor came by for her regular rounds while we were changing Tiara’s diaper. The nurse asked her to look at Tiara’s skin where she had the breakdown and asked her opinion of what she thought it was. The doctor said, “hummmm, it looks yeasty but looks more like shingles than…
Tiara update: And now Dialysis…..
I returned to the hospital this morning to find a sedated Tiara with a fever of 102.5. The nurse took samples of blood, urine and saliva searching for a cause of the new fever but nothing has revealed itself yet. As for the lungs, they look better but the kidneys have stopped cooperating. They…
Tiara update, one step forward, half a step back…
Not much to report today but I didn’t want to leave you hanging without any information so here is the most recent update. Tiara has remained stable and there was a slight improvement in her x-ray this morning. Her kidneys continue to improve as well and since the kidney issue was deemed an “acute…