Thursday, November 15, 2012

16 Hours!

Another CaringBridge post (the last one was too... I just forgot to label it)

16 Hours!
Practicing sitting up

We did it!!  Well, Ella did it!!  She's doing so well going up on her feeds and with her labs that her TPN infusion has been reduced from 20hrs/day to 16hrs/day! They are also decreasing the calories/protein in the fluid by 25% (but not reducing the volume).  

This change means that she'll be off her fluids/unattached to her backpack from 10am - 6pm daily!  Freedom!

This will make it easier for the Nanny and also the Au Pair when she arrives, not having to worry about her line/the backpack for most of the day.  Of course, Grandma Carol and I are pretty excited about it too!

The return to work has been pretty good.  I'm not too busy yet, but I expect that to change quickly.  While it's hard, I'm doing better than I expected NOT intervening when I hear Ella screaming (because she wants her mommy, not the new nanny who is a stranger still).  I was sitting in my office today wondering how long I should let it go on... but then the crying subsided (a bit).  

I am (again) super-frustrated with the GI doctors office.  

Monday - 10am - I called and left a message requesting a Rx for Ella due to increased gassiness/fussiness/symptoms of Bacterial Overgrowth

No response

Tuesday - 1pm - I called again and left a message

No response

Wednesday 7:30am - I called the on-call doctor.  While the doctor didn't call me back, I did get a call back telling me that a new antibiotic was called to the CVS pharmacy down the street.  I questioned the nurse whether it should have gone to the compounding pharmacy (as her previous antibiotics all did) and she didn't really know.  She said it could be transferred if that was the case.

Wednesday 9am - I called CVS pharmacy to confirm whether they could fulfill the Rx.  They can, but only in tablet form.  My 7 month old can't take tablets...  CVS advised that the compounding pharmacy can call them to initiate a transfer of the Rx.

I called the compounding pharmacy and gave them the information so they could initiate the transfer.

Wednesday 1pm - I called the compounding pharmacy again to confirm they had what they needed and could fill the Rx.  They said that they called the doctors office due to clarifications they needed before they could fulfill the Rx.

Wednesday 2:30pm - I run down the street to the doctors office, unannounced and ask to speak to the doctor, nurse or office manager.  The Practice Manager took me back to her office.  This is where I can see why they have such a broken process/communication loop in the office as she proceeds to tell me that she & the nurses are only message takers, they can't do anything more than pass the messages on to the doctors.  She said that they always let the patients know that the message has been passed on... I told her that I have NEVER been called back with a status.  ...remember, this is not the first time I've had trouble communicating with this office.

Bottom line, she told me, the doctor would see the message to contact the pharmacy once she got out of clinicals around 4:30pm.  So for Ella that means that she would go yet another day without the start of relief.

By Wednesday night, Ella is waking from a deep sleep screaming & crying due to gas pain (rather than the "simple" discomfort she had when I started this process Monday).

Thursday 8:45am - The RN from the doctors office calls (I think my visit helped - I got a call), she informed me that the doctor approved the proposed TPN changes (this was something else I mentioned when talking to the Practice Manager, since the last time changes were proposed it took a week for the approval to be communicated back to the infusion company).

I asked about Ella's Rx and the RN didn't know anything about it... she couldn't find anything in the computer about it...  I know it exists because the pharmacy has the Rx and the Practice Manager said the doctor would get the message to call the pharmacy yesterday...  Long story slightly shorter, RN assures me she is sending a High Priority message to the doctor AND to the assistant with the doctor today to have her call the pharmacy.

Thursday - 2pm - Talked to pharmacist, he still hadn't heard from doctor

Thursday 4pm - I decided to give Ella left over Flagyl from her last antibiotic Rx, even though that's not the antibiotic the doc was trying to prescribe this week... it is for the same purpose, she was just planning to 'cycle' different types of antibiotics.  I left the RN a message letting her know I made this decision because SOMETHING is better than nothing for Ella at this point.  The doctor can decide what she wants to do about that because we don't have enough of the left over antibiotic to get us through the weekend... so we're not done with this.

Thursday 5:15pm - Pharmacist calls me to let me know he left another message for doctor.  I told him what I did, he seemed to think it was a prudent move.

Friday 7:30am - I will call the doctor on-call AGAIN and tell them I need to speak with the DOCTOR about Ella's Bacterial Overgrowth - it has to be resolved before the weekend (the compounding pharmacy is open 9 - 5, M - F)


I'm at a bit of a loss.  I REALLY like the doctor but obviously have issues with the overall practice.  But it's not like Pediatric GI Specialists is a competitive industry in town where I can shop around for the best customer service...


  1. OMG! this is horrible! unconscionable!

    is there ANY way you can switch doctors??? this is totally unacceptable.

    in other news... congrats on a relatively smooth return to work! and good job on staying in your office! it will get easier.

    also good job for staying on top of the doctors.

  2. Your daugther is beautiful! Congrats on the reduction in TPN hours!! That is great progress and the freedom from the lines is great. Sorry to hear you are having trouble with the prescriptions. My 20 month old son has SBS and currently cycles between Flagyl and Rifaximin. One thing we have learned about Flagyl that I will share is that there are two ways of compounding it. One involves crushing the pills (the most common way) and it tastes very bitter. The second way is to compound using a powder form. You need to request this special from the Pharmacy but it is much less bitter. Not sure if Ella is taking the meds orally, but if she is request the powder for compounding. My son has a much easier time with the Flagyl now. I also want to mention a homeopathic product we have used with our son that helps with his gas and bloating. Obviously get your GI doc's approval first but it is a product by Boiron called Cocyntal. Here is a link: We buy it at Whole Foods. The website can let you know where to find it near you. Sometimes has it as well. It's a liquid and it is tasteless. It really seems to calm him when nothing else works. We went through three months of very bad bacterial overgrowth this summer (6 hospitalizations), but it is finally under control. Good luck with everything. We are keeping Ella in our prayers.
    Chitown mom of 2

  3. How horrible to have to wait this long!


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