Rowan was entertained for a while by some new toys and then the car seat got old...
We had to pull over at "my flea" and walk around to get our energy worked out.
That "window shopping" must have worn her out because thankfully she fell asleep soon afterwards.
We arrived in Katy for our visit to the new TCH west campus. Although it wasn't that much closer, it felt like it.
At 11:45 we arrived for labs.
It was confusing.
Finally, at 12:55 labs were drawn.
Good thing we had a cooler packed with blueberries, strawberries, pineapple, and goldfish... There was some serious entertaining going on.
Our now primary hematologist came in and it was a little awkward. He asked a few random questions of us and then received a barrage of questions and statements from us.
He then replied, "And who's managing this?!"
To which Chance and I said in unison, "You are!"
Congratulations:) He had no clue.
Nor had he reviewed any of Rowan's information.
He reviewed Ro's thesis, saw other patients, and finally made it back to our room.
Rowan didn't appreciate the delay. She had other places to be, and required yet even more entertainment. The stroller did well temporarily.
So the word:
No rituximab treatment!!! At first glance while Rowan was tearing up paper and eating strawberries simultaneously, he looked at Ro incredulously and said- she won't need a treatment unless her labs surprise us. Fortunately, her reticulocytes were 5.8! And Hemoglobin was somewhere in the 12's!
Decrease the steroids!!!
We have a long way to go, but this time somebody want to aggressively wean them.... His take is if Rowan is to have a relapse, it will happen when the dose is much lower than right now... So down we go! (Amen to that because I had to call and discuss rowan's increased blood pressure again with her other physician. Her dose had to be increased again due to her pressure continuing to rise. Maybe the decrease in steroids will bring her bp back down too)
And
How do people who aren't nurses take care of these kids?! Our new hematologist tells us vaguely to decrease the dose... The medicine comes in a liquid 15mg/5ml which requires a calculation to get the appropriate amount of medication to Ro. And how would regular people know this? I have no clue. I'm sure they would have been thoroughly confused by his very listless description of the weaning process.
No more PICC line!!!
This again took time to find the correct person to remove the line. By this time (3pm) mom, dad, and Ro were all tired of the cramped room.
Somewhere underneath all the hands, you will find Rowan. This was the Picc removal. She did fabulous!!!
So after the mentally exhausting events, we were able to head back HOME! And the car ride back felt fabulous!
Sorry it's upside down... But she is Picc/diaper arm free!!!
And we don't worship other gods, but is she not praying to the germ X bottle? Poor kid- we're creating an OCD handwasher.
After bath time, and handwashing we took Ro for a quick walk in her favorite car.
The camera is a little shaky since we were all walking, but towards the end you can see her bouncing up and down. It's so fun to see her so happy!
(***insert movie here*** but it's not working, so I will have to post it later)
Afterwards, I peeked in on daddy rocking her to sleep:
Two passed out.
No comments:
Post a Comment