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 came back that she may be a little dehydrated which could explain why she has only been urinating 2-3 times every 24 hours. Hmmmm, it doesn’t explain why she is puffy and still seems to be having lots of seizures.
I was about to drive her to the hospital on Monday night and then she finally urinated so her doctor said she was OK to stay home. I have researched and researched and am not sure what is going on. I am taking her back to the doctors on Wednesday and hopefully by then he will have gotten us patched through to nephrology. Apparently that subspecialty is super busy, just like the rest of the specialists, so I have no idea how long it will take to get her in.
Either way if something doesn’t change in the next few days, I am going to go crazy. I keep thinking she has a Urinary tract infection because that happened after she had acute kidney injury the first time, but she doesn’t have a fever and the doctor said that wouldn’t make her puffy. I am going to have them put in a catheter tomorrow and check, because that would explain a lot. A UTI can interfere with urination and any infection can cause extra seizures. I hope it is that simple but I doubt it.
Aside from staring and worrying about Tiara I haven’t done much. I actually feel sick from worry and stress. When I get to this phase my whole body aches and nothing makes it feel better. I notice time flying by while I sit and stare at TT.
And on a positive note, my sister’s store, Heather Pullis Designs (HPD), moved locations and the new space is really beautiful. It is in the shopping center with Banzai Bowl on the corner of 17th Street and Irvine Avenue in Costa Mesa. The store looks very New York/ LA chic with cement floors, reclaimed wood accents, black crown molding and cool lighting. In addition to her custom jewelry they are also selling clothes, shoes, candles, scarves and hair accessories. Tabitha (the manager of HPD) loves the new location and has been in a super good mood, which makes this Mom happy. How cute is this wrapping Tabitha designed for Valentine’s Day? Stop by and visit my baby if you live in the area.
xoxo tiffani
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That wrapping is adorable by the way. As for Tiara, I am so sorry to hear you still have no answers as of yet and say prayers you find out today something more and that it is as simple as UTI. Fingers crossed and prayers being sent you way as always!! 🙂 xoxo!!
Thanks for the continued prayers and good thoughts! xoxo
Tiffani, I cannot say enough how sorry I am that you are not getting the answers you need…hang in there, and please know that I am praying for you and your family. You are an amazing woman, and you are an inspiration to many. I can only imagine how difficult life is for you, but yet you always seem to find the silver lining and your optimism is just phenomenal. I appreciate that you are sharing your journey with others, and I’m so glad that I found you, as I look forward to your updates. Please hang in there, and know that you have a friend in Lapeer, Michigan who cares about you. God bless, April LaBar
Thanks so much April! It is nice to know Tiara and I have friends all over the world who are praying for us. xoxo
Hi Tiffani-
Just wanted to let you know I that admire you so much for your strength, honesty, and devotion. I pray that Tiara gets better. FYI, my mom had a mild stroke that was caused by a UTI -it really can whack out one’s system. Thank you for keeping us posted (even when you don’t feel like it!). Sending you a virtual hug from Florida.
Thanks for the prayers Rya. I am hoping it is a UTI, too, they can cause lots of problems if gone undetected. xxoo
The wrapping is nice. Many prayers for you all. Sure hope you find out more of what is going on with the puffinesss & all. As we know UTI’s can cause many things with the body in many ways. I sure hope & pray for you strength and some rest as us mothers never slow when it comes to our children. Big Hugs! You are a wonderful mother!
Thanks Sheila! I always love to hear from you and appreciate the continued prayers and support. xoxo
praying Tiff. The feeling of knowing something’s wrong but not having the answers is so frustrating. you sound a lot like me. I seem to shut down physically whenever dac is ill. I love TT’s smile and you all look beautiful. Congrats to your sis.:)
I know you understand the feeling of sitting and staring at our babies and wondering what is wrong. Thanks for all the prayers!
Sending more prayers and good thoughts your way! You’re really an incredible mom, Tiffani. I love how you find optimism in these difficult times– getting Tiara to smile by stretching her oxygen line to the swing. Hang in there! And I will be sure to go see Tabi at the new store!
Thanks for noticing my attempts to try and always look at the positive. Tabi will be excited to see you, she adores you! xoxo