Wednesday, February 23, 2011

One way or another, to the hospital we go

Well we're off to Primary Children's today. X-ray showed considerable swelling in parts of her intestine and no one knows the cause yet.

This morning her eyes are deeper-set than yesterday. She's acting like she wants to vomit again. No eating. Won't drink her Pedialyte.

I haven't seen the X-ray myself, but the doctor at Utah Valley Regional Medical Center, Kurtis R. Kendall, MD, who wrote up the description said:

"Findings: Again seen is dilated colon. This has been present on multiple previous examinations, however, it has increased in prominence on today's study. On examination 3/1/2010 the cecum measured 4.0 cm. Today it measures 5.8 cm. On the previous study, transverse colon measured 3.5 cm and currently measures 4.5 cm. Small bowel loops are not clearly visualized. Surgical clips in the pelvis.

"Impression: Increased dilation of colon."

OK.

So, those of you out there who know anything will say... huh. She has no colon. No transverse colon. No cecum.

Does this guy know what he's talking about?

Those thoughts have entered my mind once or twice. For an official medical document, there're several stark errors.

In the end, no matter what you call it, the doctor saw increased dilation. So true. I could easily tell that without an X-ray because her belly is big.

At this point, I'm trying to get appointments with her surgeon and pediatric GI at Primary Children's, so that someone who is actually familiar with her and the fact she has no colon can look at the X-ray and maybe have more insight.

I'll try her surgeon first, as he is the guy I have trusted most through this whole process. We haven't seen him in over a year.

Her GI, while well-meaning, doesn't see eye-to-eye with me. (For example, when I went in to talk about our options for C diff control, he immediately tried to push me to do another surgery and give her a port-a-cath. Um. No.) And also, his record-keeping isn't great. (After he gave us one prescription a year ago, we did a phone consult and decided together to change it. When the pediatrician called last week to corroborate dosage, he had no indication of the change in his records. "That's not what she's supposed to be doing!" Oh really? Maddening. And, if you think about it, I couldn't have gotten a new prescription without... a prescription. Oy. The tales our eye-rollings do tell.)

And while I was typing that I was on the phone. Bridgette has a consult with Dr. Black at 3PM today if we can make it that long. She's really not doing well.

In the meantime I'm trying to set up an IV bolus infusion at home, but no one from Home Health Care is picking up the phone... except the operator (2 times out of 3)... who then proceeded 1) to hang up on me, and then 2) to transfer me to the wrong office in Home Health Care... where they also didn't pick up the phone.

I don't sound frustrated do I? No hammering keystrokes here.

Bridgette is beginning to have watery diarrhea, but a few minutes ago she took some Tylenol for me. If she is in dire straights before 3PM, we will have to enter Primary Children's through the emergency room then trip over 10 additional layers of nurses, interns, and attending physicians talking about her "colon" on yesterday's X-ray.

You know, we went to the pediatricians office last Wednesday (one week ago), and I requested that Bridgette be put on Zithromax and Vancomycin. I'm officially putting that in digital ink. If, when this all goes down, I am wrong -- you are welcome to nah-nah-nah-nah-nah at me all you want.

But if, in the end, that's the recourse they take and it fixes her? Well... you think I'm mad now? You ain't seen nothin'.

2 comments:

Lisa said...

Oh Kelly! I'm so SORRY for you guys! My heart goes out to you and your family and poor little Bridgette. You may not feel it now, but you guys are CHAMPS!

Kate @SwimBikeQuilt said...

Wow. I hope you raise he$& today. Good luck. I'm so sorry for her (and you) that she isn't doing well and no one knows what they are talking about.