Thursday, April 16, 2009

Cardiology...A love--hate relationship

I have been meaning to post an update on how we are doing at home, but have had no time, that post will come within the next few days. But for those of you who may need a Gracie fix until then enjoy this little video.

I don't think she is enjoying it as much as I am, but she did try to laugh, hence the hiccups.

As many of you other heart families may know, these little ones get addicted to some major narcotics and as a result must experience detox and to help them wean off of the narcotics they are given other controlled substances to help ease withdrawal. Anyways, Gracie again came home on an ativan/methadone wean, slower than they typically try to wean, but faster than I think is really necessary... Well Gracie has been struggling with the wean, so I have slowed it down with the advice of our family doctor, as a result we have run out of the liquid life saver since the docs only prescribe the exact amount with no refills.

Wednesday I realized that we were very close to being out of methadone and didn't know what to do. Our doctor is out of town, so I couldn't call her office, so I called Cardiology up at Primary's, I left a message and waited. No return call, so first thing this morning (8am) I called again and spoke to the receptionist. I explained that we HAD to slow down the wean because Gracie was having severe withdrawals--increased vomiting, diarrhea, and fevers once we went from three times a day to twice a day. I told her that this morning I used every last drop and it still wasn't enough to equal the does she was getting. The receptionist told me she would mark the message as priority and that I should hear back within an hour or two from the nurse, once she got in. I asked if she wanted to know where we were on the wean process, but she assured me that the nurse would find all that out.

So I waited and waited, finally around 3pm I called again, I spoke to another receptionist that wasn't too helpful. She checked the notes and I guess the nurse was waiting to hear back from the cardiologist to know what dose to prescribe. I asked why I never got a phone call and the receptionist said that the nurse must have been waiting to hear from the cardiologist. I explained that it didn't make sense because how was he to know where we were on the weaning process, especially since we slowed down and deviated from what was prescribed. The receptionist assured me that the cardiologist would know since he could look back at Grace's discharge orders---stupidity if you ever asked me---unless the cardiologist is psychic too---he isn't going to know. So I explained again that Grace had no more methadone, that she is highly addicted and extremely aware of when she is late with doses (ask any nurse who has ever worked with Grace). All the receptionist could do was tell me that hopefully I would hear from someone today.

Well 5:30pm rolls around and nothing, so now I'm freaking out, I have 2 1/2 hours to figure out what I'm going to do. I thought, well I could increase her ativan dose, try to knock her out with Benadryl all night and get through till morning. I called our home health nurse for advice and suggestions, because she is wonderful and knows so much and she said I could increase her ativan dose if I had to but that I should try calling again and ask to speak to the cardiologist on call. What brilliancy, because, within 5 minutes I was talking to a cardiologist, who understood the urgency of our situation. He wrote the prescription and was even going to fax it down to the pharmacy, but because it is a controlled substance I had to go up to get it. It now being 7pm I had to get the prescription and fill it all as close to 8pm as I could. So I left home rushed up to the hospital (about 45 minutes away), waited about 10-15 minutes for the cardiologist to meet up with me and rushed back down to the pharmacy to fill the prescription which took 30 minutes.

I am pleased to announce that I went to Primary's and back in 1 hour and 15 minutes, got the prescription filled and had it in my little Gracie's stomach by 8:30pm, only a half an hour late! I'm super mom! So I love the cardiologist that we get to work with, but absolutely despise working with the clinic over the phone, they need to learn how to better assist and help their clients....lesson learned--if you need to speak to a cardiologist, just wait till after hours!


The Simmons Family said...

Good for you!! You'll figure it out pretty quick to always go straight to the cardiologist on call. I never speak with receptionists and only nurses that KNOW Owen. Now that we're in transplant mode.. the crazed mom becomes a little more crazed. Now, I have my cardiologists person cell number to call for anything. :)

Seriously, if I have learned anything... it's that we are the ONLY ones that are going to get what our kid needs.

Way to go!!


Ryan & Brytten Pettit said...

I'm totally with you...I always wait till after hours...during the day you just get the run around.

Glad you are all hanging in there!

Christina said...

Good job super mom! It is funny how we figure out how to best help our little ones. I hope the wean goes more smoothly.

Hugs & Prayers,
Jacob's Momma

heidi said...

You are such an example to us all. Hoping the methadone takes the edge off. Thanks for the Gracie fix! Hope the methadone works. It was so helpful for Tyler.

Douglas Lai said...

Oh my goodness how frustrating. Glad you were finally able to get her drugs though. Way to go super mom!

Amber Lancaster said... picky computer finally allowed me to leave a post!! I am so happy to see that Grace is making progress. I am glad that you got the medicine situation under control...hopefully that will do'the trick' for her. You really are a supermom. I think of you everytime I have little issues and remind myself of the strength and endurance that you have, and I know that if you can handle all of the challenges that have came your way, I too can manage mine. I check in often for my "Gracie fix."

The Taylors said...

Go super Mommy! That is crazy, the darn cardiology department is CRAZY to get a call back. Even if it is an emergency. Glad you got her medicine for her. The pharmacy is usually no help either. Glad you guys are home and doing well. Kylie was so used to the pain meds that after her Glenn I made them knock her out cold for the night. It is such a frusterating process to see your little one hurt so bad and not be able to help.

emily and kevin griffin said...

that is amazing to get there and back so fast! wahoo! i'm sure that's very tough on grace, and I'm glad you were able to find a doctor who was understanding of her situation, that's so good!

Gina and the Gang said...

Way to go! You are a fast learner....many times when a situation with Casey has not been resolved by 4pm...we wait until after 5pm so that we go straight to the on-call doctor!

Nic and Ashley Haws said...

oh my heck! Those idiots up there!!! Seriously!

I'm so glad you were able to figure it all out and get Grace her meds. Sometimes you just gotta know HOW to get through the loops. I'm glad Moira helped you. She's wonderful, isn't she?

You are DEFINITELY super mom!!! I'm cheering for you and Grace!