Tiara is getting better, yet again!

Good news! Tiara is off the bipap and is on a regular oxygen mask. She thinks she is all better so my whole purpose in life has been to stop her from tearing off her leads, pulse ox, and oxygen mask all day! The nurse just asked me if I felt like I was playing a role in Groundhog Day? Apparently I am not the only one who noticed I spent my whole day putting the pulse ox on every time TT took it off, which was every 30 seconds.

My parents brought Trinity to visit and while I was talking to Trin, my Dad was sitting bedside with Tiara holding her hand. Suddenly she made a quick grab for the IV in her foot and got it out before I could stop her. We had already almost lost the other IV in her neck this morning but the nurse had managed to salvage it with a little tpn. The IV in her neck “pulls back” which means you can draw blood from it which is imperative for Tiara’s care because apparently it is nearly impossible to get blood or put in an IV in at this point in her life.

As I have mentioned in the past Tiara has always been a tough stick but during the past few days I saw the evidence of her crappy veins first hand. At the ER they couldn’t get an IV in, so the doctor went rogue and put it in her neck, he was tired of messing around.

Once she got transferred to CHOC ICU, the nurses realized they needed more access for her multiple meds and bags so they needed to put in another IV. The charge nurse came in with a special ultrasound machine that allows her to see the veins, so she knows exactly where to put the needle. I watched her work on trying to get this IV on Tiara for an hour without success.

She kept telling me during the whole process “ I am so sorry, this isn’t working, but I never excepted to see something like this.” I looked at the screen and was surprised that her veins looked like a super unorganized cluttered space. I then asked the nurse, “Her veins look really weird, is that what they are supposed to look like?”

Nurse: “No, I have never seen anything like it. I am really surprised.”

Me: “ Why do they look like that?”

Nurse: “ Those are the veins of a chronic patient.”

Wow, hearing that and seeing her ragged veins made me feel really bad. I know she is a chronic patient and I know all the seizure drugs are really hard on her body but to see the internal evidence, really scared me. Looking at those veins made me realize that Tiara may not be invincible forever but for right now she still is and that’s all that matters.

P.s. As you read this remember I typed it on my iPad which I finally got to use once Tiara fell asleep, so they may be more mistakes than usual.

xoxo tiffani