Sunday, September 4, 2016

A quick update on Urology/GI procedure plan

When I last left off, I mentioned that both urologists confirmed that they could perform Ellie's cecostomy and tube placement for Monday Sept. 12, but they wanted to discuss the surgical approach.  Well. . . I was confused because at our long awaited urology pre-op appointment, we decided on a laparoscopic approach with the possibility of needing to open her abdomen up completely.

Of course, the other surgeon was out of town so they couldn't not discuss immediately.  I gave 2 weeks and left a message this past Monday with the nurse.  Tuesday, I get a phone call from Ellie's secondary GI specialist, the one who performed the colon manometry back in June. He tells me that the procedure will be done in interventional radiology [IR] where they just "pop" the button right in.  It is less invasive and the hospital stay is closer to 48 hour as opposed to 4 days.  Obviously, this is all good, except, at our urology appointment in July, GI relayed to urology to not do it through IR because her colon may be too floppy from being stretched out.  What?!  So do they bring her into IR and if it doesn't work we need to relocated to the OR?

Friday approached and as usual, I never heard back from the urology nurse.  Dr. McQ, the actual urologist calls me personally.  Her surgery on 9/12 was CANCELLED back on Tuesday since her procedure will be performed in interventional radiology and not the OR. She assumed that I knew this already.  Urology is no longer in charge.  GI put in the orders.  Radiology is taking over. If GI was going to put in the orders, why didn't he do so in June?!  I immediately called GI and then googled the number for radiology.  Radiology never calls back, but GI does. . . only it is the other GI's nurse.  According to her, IR is booking into late November, early December.  I may have lost it.  I spent the afternoon angry crying.

first day of 1st grade


June 16th - referred to pediatric surgery by GI, then Dr. C in urology
Dr. C out of town, then takes another week to look at her case
Referred to Dr. McQ in urology and she is out of town
July 24th - urology appointment, tentative surgery date because need to coordinate with Dr. S
Dr. S it out of town so more waiting to coordinate
Both urologist can do the 12th, but need to discuss approach, Dr. S out of town
August 30th - GI calls to change plan
Sept. 2nd - surgery cancelled
No new date yet.

She lost her front tooth!

This is ridiculous!  If she gets booked in December that is SIX months since the ordinal order was put in.  SIX MONTHS.  My daughter is in pain.  PAIN.  She is uncomfortable and only goes with a special enema that I have to constitute myself.  We can only give those enemas twice a week which is not enough to help her.  Her medications do nothing.  She spikes fevers because of this.  She had to have a urinary catheterization due to being unable to pee and screaming secondary to constipation.  This is unacceptable.  I will be rattling radiology's cage.  I will cry and beg for my daughter, but it isn't like I can personally create an opening in IR.  I will contact a patient advocate in hopes of filing a complaint.  Other than that, all I can do is scream and watch Ellie suffer for another 2.5 to 3 months while they all had their thumbs stuck up their *sses.  It seems they all forgot that a real human child is involved.

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  1. No help but I'll be thinking and praying for you. I hope the doctor's and the staff finally get their heads together and make things happen the way they should.

  2. I'm so frustrated on your behalf, and so sorry that your family is going through this. I had similar issues with doctors in the UK when my daughter was small, and can only sympathise. Make as many complaints as you can, go to the head of whatever department has let you down, speak to the CEO of the hospital system: the agreed plan has been abandoned without your permission.

  3. A friend found your blog and sent it me. I have been in the same boat with my son and still have no direction or help. Please please please contact me when you can. My email is We are in Lutz, FL and have traveled to almost every hospital in Florida. We did finally get the motility study in Orlando 2 years ago and have been using the Peristeen Irrigation Pump but not further action as been done. Urology blames everything on GI and won't even do tests or even prescribe anything for the retention. We live in constant pain and fight or flight mode. My sweet boy needs help and I will never stop fighting for him. Please contact me as soon as possible.

  4. I'm still furious for you even reading a week later... Sending hugs and loads of righteous mama anger.


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