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 around to doing it on Friday. I was rather surprised that once I emailed her, she responded instantly and asked for my phone number. She called me within minutes. After talking to me for a bit she asked me to bring Tiara to UCLA medical center and have her admitted and hooked up to video EEG.
What? “I can’t! We just got home and she is still sick and I am worried she will get another bug in the hospital. Please, I just can’t!”
After further discussion and me begging not to bring her in, we came up with a plan which included increasing one of her medications and watching her closely. Nothing new there, since my whole life consists of watching her every move.
She didn’t seem to be having as many seizures, on Saturday which was great, but she woke up puffy in the face. “Why is she puffy? Are her kidneys not working right? Have we gone down on the Lasix too quick?”
She urinated normally on Saturday and was really spunky so I didn’t worry too much about the puffiness but I was definitely thinking about it in the back of my mind. I did some online research and contacted a TSC Mom whose daughter has had chronic kidney problems since she was diagnosed and recently had a kidney transplant. I ran a few questions by her and felt a little better,that is until I work up on Sunday morning and saw she was even puffier. “What the hell?” I first checked her diaper, and it was almost full. Thank you Lord! Even though I was happy about the urine, I still felt panicked and have been ever since I saw her face at 5am.
I called the pediatrician at 8am, explained the situation and asked for more Lasix. She called some in for me, but wasn’t really helpful in relieving my stress because “she doesn’t really deal with acute kidney injuries on a regular basis”. Hmmm. Now what?
I just kept reviewing everything I knew about edema which I learned in the ICU. “It is dangerous if there is too much fluid around the lungs and the patient can’t breathe well”. Ok, check her oxygen level regularly and make sure she is urinating. Well, Tiara refused to drink much, no matter how much I begged her and not until 7:30 tonight did I finally get another 2 wet diapers. UGH!
I hate not knowing what to do! I can do neurology and pulmonary issues but I have such limited experience with the kidneys I feel totally lost in determining what is or isn’t an emergency. All I know is that the second I get her up tomorrow we are going to the doctors and having them get her into a nephrologist ASAP. I just need to keep her out of the hospital! Wish us luck!
xoxo tiffani
Janine Huldie says
Wishing you tons of luck and so sorry you don’t have much in the way of answers right now. I truly hope you get them and that Tiara continues to improve health wise now and no more hospital stays anytime soon! 🙂 xoxo!
Sheila Martinez says
My thoughts & prayers are with you! Please keep me informed as I know you are busy & I understand.
Big Hugs!
Betsey Riedl says
Thinking about you, Tiara, your other girls and hubby. Hope all is getting better!
Lisa Cummings says
Lots of luck and love. Hope you get the answers to the puffiness. Dac is a holder and can go hours without urinating and other
days she floods diapers but there is never any puffiness. She has lots of cysts and lesions on both kidneys so like you I am
always watching and worrying. It’s a wonder we are not completely gray headed right? You are a super mom and TT is as lucky
to have you as you are to have her. hugs
Lanaya | Raising Reagan says
I can’t imagine the frustration you must be feeling. I’m so sorry Tiffany.
I hope that TT’s kidneys start to cooperate.
Hugs mama
xoxo
Lanaya
Sylvia says
I’m so sorry Tiffani. It must be so scary not knowing what’s going on. Prayers for you guys.
Stacie says
You sure are an honorary MD Tiffani!! I hope they figure this out fast so you guys can finally get back to normal. Thinking of you and praying that this passes quickly. Hugs, Stacie xo
LeSlie says
Sending more prayers your way!! So sorry Tiff, all the worry on your heart send up to heaven and to all your friends and family.
Xo Les
jamie@southmainmuse says
Sending tons of luck and love your way. Hope things are still progressing upward. hugs.