tiffani goff

tiffani goff at home

Sadly, she is back in the hospital

I’ll make this quick as I haven’t slept much. Yesterday I took Tiara to the emergency room because she hadn’t urinated in 15 hours.  She looked really puffy, was shaky and I was very concerned after she started vomiting.  I am pretty sure the vomiting was a seizure because her eyes were darting side to side all day and prior to throwing up she said “seizure, seizure.”

 
Either way I was really feeling panicked and when I called her pediatrician the nurse once again said,  “just drive straight to the hospital and I will call ahead for you.”
 
So we spent the day in the ER, did the regular tests and of course they admitted her because they aren’t sure why she isn’t urinating.  Her blood work looked good, her lungs looked the same (not great but not bad) but something is wrong.  They put in a catheter to release the urine and tons came out which is good because we know she is making urine, but just isn’t voiding it.
 
We finally got to a room at 8:30 pm, finished her meds and everything else when she finally fell asleep just after midnight.  I got to bed by one am only to be awoken to alarms at 2:45am indicating her oxygen level was at 77!!!!  Of course no one came to help.  I turned on the light, hit the call button, found the right oxygen valve on the wall, pumped it up to 4 liters and then threw open her door to see if anyone was coming.  Not a soul!   Thank God her level started to climb back up right away just as the nurse and respiratory therapist showed up and asked if there was a problem.  I was so mad I gave them a few comments to think about and went back to bed but was seething. 
 
I get so tired of dealing with that nursing issue while she is a patient on the “floor”.  
 
As always I will keep everyone updated as best I can.
 
xoxo tiffani

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Comments

  3. Tiffini, I just found your blog a few weeks ago. We have a 19 year old son, Tyler, with TS. I appreciate your blog, feeling so many of the same emotions, frustrations and joys. I hope they figure out what is going on with Tiara soon. You are doing an amazing job as a mom and nurse!!

  4. Oh Tiffani. I couldn’t believe it when I read the title of your post. That is so awful. And 77? The poor girl. Thank God you were staying with her. (I know you always have someone with her — but what about the poor people who couldn’t be with their loved one all the time?) Stay strong and get some rest. Praying for Tiara. And you.

  5. So sorry. Tiara wasn’t doing great before the last discharge, yet she was released – and I had this gut feeling she was released too soon to fully recover. So I’ll bet her body and lungs just need more time to fully recover before getting back home into her more active life.

    I know you’re worried. I would be, that’s normal.

    Good luck to you both.

    • Reading your comment just made me feel sad because you are right, she wasn’t totally recovered. I am starting to wonder if she will ever totally heal and return to her old self?

  7. Oh no and so sorry to hear Tiara is back in the hospital. Good for you telling the nurse what you thought. Seriously, thank god Tiara has you. You really are a wonderful mom, Tiffany. Keeping you all in my prayers, as always!!

  8. Thinking of you tonight and praying for you…it’s late…you and TT are on my mind…and my heart just wanted to reach out to you and remind you there are many of us out here who care and who are here as a support for you…

  9. You guys just can’t seem to get a break! Good thing Tiara has a great mom like you who stays in the hospital with her! I can’t tell you how many kids literally DYING of cancer had NO parents staying with them in the hospital!! I cannot understand that. Praying that this visit is a short one!

  10. OMG! I wouldn’t know how to deal with the nurse not coming to the aid of a patient when there’s a problem. I’ve unfortunately had my share of trips to the hospital and am surprised at the number of times the alarm went off and no one came. What’st he point of the alarms if you can just interpret not to come. I hope baby girl gets better and you get some answers. Sending love your way.