Rowan's Liver and Onions: Doozie of a Day

This day actually started last Friday. I called to confirm the appointments and times for this whopper.
Everyone was confused... And I was frustrated.

After a very blessed and wonderful labor day spent with daddy, we enjoyed our break!

Then, it was back to the grind on Tuesday. I called to again confirm and discuss details talking with at least three people.... ever knowing in the back of my mind this day would most likely be horrendous.

The trip down confirmed my fears. Rowan screamed forever and forced herself not to take a nap. The only thing that would get her quiet was Toy Story 3 (netflix + iphone). I took my case off to plug in the Aux cord so we could all hear Tom Hanks over the car speakers. It was a blissful 45 minutes.
We got out at the outlet malls for a stretch and some retail therapy. Empty= Perfect...
Until I dropped my phone (still without the case) and the screen shattered into a hundred pieces. Great.

When we were about 15 minutes away from the hotel, she finally went to sleep. Ha.

To comply with scheduled labs in the morning, we are supposed to give Ro her prograf at 9PM so her level can be checked at 8:30AM. (Thirty minutes before her next dose) Well, I just knew if we were supposed to check in at 8:15AM there was NO WAY she would get an IV started and labs drawn by that time. So I made an executive decision to give her the prograf at 9:30PM, hoping the IV would be started by 9. She was so tired, I was able to slip it in her mouth while she was still asleep. Amen!
On a side note, this exact same thing happened on the last trip with her lovenox level--- I adjusted when I gave that to her as well, for the same purposes...

***Spoiler Alert***
I was right. No IV by 8:30. Maybe I should go into the fortune telling business.

Today, Rowan woke up at 5:45AM.

Before we left the hotel she had a gigantic poop bomb and two baths. I was so optimistic that this day would go smoothly, but this should have tipped me off.

After we checked in and waited for 20 minutes, I informed the front desk that Ro had a timed lab they just missed. The desk clerk then informed me, that I should have notified them when we first arrived... OH MY. Momma was. not. happy. I have spent days on the phone with people, trying to organize these timed labs, trying the get the IV situated, trying to make sure everyone knew the plan. FAIL.

So, we were ushered back and the Vascular Access Team was called. (Even though I had asked for them to be notified the day before that this would happen...) We waited, and waited. Our beloved Scott was out of town, so we had a new person. Unfortunately, it was not a one stick day. He got the IV on the second try, but this was technically after four sticks. Two were lidocaine. And, I am thinking I may veto that next time... she screamed just as loud when he poked to start the IV and she was supposed to be numbed. One stick is always better than two... and two is better than four.

So labs were sent around 9:45AM. I could have given her the medicine at 10PM last night... but I was close.

We had an appointment to visit a hematologist. check.

We then left the 14th floor and headed to see Dr. Himes, our most favorite GI dr. ever.
After a good chat with him, it was clear to see Ro was fading.

Moving on, we headed back to the 14th floor, as ordered, even though I was pretty sure we were supposed to make a stop on 9 for her inhaled antibiotic treatment.

Got a little Good News when we arrived!!!
NO MORE LOVENOX INJECTIONS! We can stop poking poor Ro to death!
And, instead of being out in this large open space with tons of kids and tons of noise, we got a semi-private room for Rowan's infusion! Thank you Lord, because I might not have made it otherwise. And thank you God for iPad's and Toy Story 3. Rowan was so tired at this point (noon), she was in a zombie-like trance. Still no nap, but gosh nothing is better than chick-fil-a.

I talked to our nurse during the infusion about the inhaled antibiotic and she assured me, it was allll worked out. So after the infusion, which lasted 2 1/2 hours this time, we were ready. Not.

Apparently, I was right the first time and we were supposed to make that pit stop on the 9th floor. So we rushed over there at 3PM, only to find- they needed to fax the order to pharmacy to make the medication...30 minutes later we were finally ready to rock.
Rowan screamed bloody murder for the entire 20 minute treatment.

Then, we ran out of that hospital as fast as we could.

Rowan was literally asleep before we got out of the parking garage! She was completely exhausted.

After sleeping nearly the entire way home, she had a bath, and is now back in bed.
Ah, how good to be home! And so nice not to give my baby a shot tonight!!!

What a day... And supposedly the same thing next month?! Yeah, we may make that a two day adventure...

Thank goodness GiGi and Pops were able to come along for backup. This job is much too large without somebody there to help you.

Here are a few photos. Think of them as a prize for reading this lengthy post. Rowan is too precious even all zombie-like with food everywhere! PS- Rowan did great for her treatment and her liver numbers look good. Amen!