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 has shown to be wrong except the “shingles”. Infectious disease spent a half hour looking at the rash, reviewing her temperature patterns and vital signs and can’t confirm whether or not she has shingles. Apparently they could just get a scraping to confirm the diagnosis but the medicine to treat the shingles is really hard on the kidneys so they decided they would not treat her with an antiviral for the shingles even if that is the correct diagnosis, unless she got worse.
She remained febrile most of the day as she can’t take Motrin because it is hard on the kidneys and Tylenol never works well for her. I am really getting annoyed with her kidneys because she had her 3rd round of dialysis today and they weren’t able to pull off much fluid and yet her kidneys still aren’t showing any signs of improvement. They are keeping her as dehydrated as as they can without risking throwing off her electrolytes, yet she is still collecting fluid in her body’s tissue which isn’t being excreted by the kidneys nor is it able to be pulled out with dialysis. Dialysis can only pull out fluid that resides in the vascular system, not in the tissues and as a result she still may have too much fluid on her tomorrow to take out the breathing tube. This description maybe a little medically inaccurate but it is how I have processed the concept .
And now how we spent most of today: cleaning diapers!!!! Poor baby hadn’t had a bowel movement in 10 days and they filled her up with Miralax and anemas for days on end and today everything decided to come out all day long. Her nurse is really hilarious and the respiratory therapist and I spent most of the day laughing at her nurse. I had to turn her on her side and keep her there, the respiratory therapist protected the breathing tube and the nurse, wiped and wiped and wiped. If TT was awake I know she would have been laughing too. As I am writing this I just had to step away and help clean up a disaster, think it is going to be a long night.
So I have no idea what tomorrow is going to look like but I do know when I told you last week we would be here at least another week that was wishful thinking. Wednesday will be day 14 and I am having a hard time picturing when we will ever leave here.
xoxo tiffani
Tiffani, I was so hoping to click on your page this morning and read good news and am just so sorry things haven’t gotten much better. I am so hoping the fever comes down and today will be a better day. Thinking of you all and still saying prayers!!
Poor thing – it’s good she’s sedated. Wishing her a healthier day than yesterday.
Oh Tiffani,
I check in every day to see how things are going, and say a prayer every night. Tiara’s body is really fighting hard. I keep thinking the fever has got to be from the Shingles? And those silly kidneys, what the heck??? They need to GET WITH THE PROGRAM, lol. Ms. TT has a lot of plans, and she needs to get better and get home. My love to you both…..
Marcy
I’m really sorry to hear about your daughter. I hope all is better and you are back home with her soon. I saw you featured at Raising Reagan today and came to say hello. Lanaya’s saying wonderful things about you, you know. 🙂
Tiara would definitely be laughing! We all know how much she loves funny people. Come on kidneys kick it into gear ASAP so TT and Tiffani can move along with this process. I miss you guys! xoRorie
Oh Tiffani. Good grief. I hope this will end soon. Sounds like this infection really got poor Tiara. We are all praying her kidneys are completely healed soon. I’m sure Tiara can sense your laughter. That’s got to help her mood.
I don’t know what to say. I’m so sorry you guys are going through so much crap! Hoping and praying healing comes soon.
I am so sorry you are going through this, Tiffani. Every day when I walk past your house, I am hoping to see your car there, and when I don’t see it, my heart falls because I know you are still at the hospital. We pray for you and your family every day.