Biopsy Countdown....GRRRR

[Chelsea]

Gillianne is set for her biopsy next Tuesday or so I think. I have received nothing confirming the day/time/surgeon/pre-op. Nothing! Due to the bizarre nature of her conditions, the general surgeon wanted us to meet with anesthesia pre-op yet nothing has been scheduled, no calls, again, nothing. I keep leaving messages but the return calls have been going to my voice mail where they won't leave any messages.

I had also asked my Biochem Dr to investigate the testing available in Japan, today was my 3rd phone call to the genetic counselor to follow-up and still nothing. Our Biochem Dr has always been fabulous but I know he also just got back from the Alaska clinics he runs every 3 months for 2 weeks, so he is very busy. But ARGH!!!!!

[kristen]

Oh Chelsea! I'm sorry you are having such trouble with these yahoos! I don't understand why Drs are like this sometimes! Don't they understand how behavior like this rocks our confidence in them...how do we then hand over our little ones to their care? JERKS!

I'm sure it all boils down to lack of professional skill/bedside manner, and perhaps even some miscommunications mixed up in there too...GRRRRR!

All I can do is suggest that you call & call & call until you connect.

Have you been able to talk to a live person at all? - even an admin any of the times you've called? If you have I would connect back with this person and unleash your frustrations on him/her...demand a call back from someone with an update, etc.

The other thing I've done in really frustrating times like this is page the Dr or page the covering Dr...

I would also put a call into the ped. Perhaps the peds office will have more success getting through....

As a last resort there is the patient advocate line at the Hospital, Crikey, I think you need someone to get back to you with some info before next week!!!!!

Good Luck, meantime [[[[[[HUGS]]]]]

KJ

[Chelsea]

Thanks Kristen!

After my tantrum yesterday I finally started to get phone calls returned and get some answers. We are meeting with anesthesia on Wednesday, assuming we go through with the biopsy.

The genetic counselor emailed and called yesterday with a follow-up on the tests in Japan. The Dr had a chance to review the literature (of which she forwarded me the entire article, as I had only the abstract). The Dr feels it is a viable option for us and they are looking into time frame and cost, as it would be out of pocket. Insurance won't cover testing such as this, especially being out of the country.

I hope to have more as soon as we hear back from Japan.

DH feels we need to move forward with the biopsy and just have our final answers, especially since it took us so long to schedule this surgery with all the coordinating of Drs. I think I just need all the information before I can agree to that but at this point am still planning on the biopsy.

[kristen]

As stressful as it's been, I too think it's best. I can completely sympathize with your fears & frustrations and do not want to minimize them in anyway...but I think in the end, the best thing will be to get a definative on what's going on with Gillianne's liver once & for all.

I think after you have a chance to rebuild your confidence in the Drs (when you meet with them) you'll feel better. Obviously you need to make sure that everything from everyone (from the kitchen staff to the nurses to the Drs) follows the rules to keep her healthy during this procedure. I think once you've had a chance to get that across, you will be more at ease.

Sending lots of positive vibes and thoughts for strength & courage! IM me anytime!

Good Luck & please keep us posted on both of you!
KJ

[Tammy]

Having been through it in the past, I too, agree that it's the best thing to do in the long run. Knowing for sure, and having some answers is soooooooooooo much better than just doing all the guessing and questions.

I still think about when Regina was in the hosp last year. The insurance co would NOT have paid for the more expensive kind (over $1000 a day) of feeding she needed if they didn't have that DX. The Drs didn't doubt me, and were very helpful, but I would have had to pay for it out of pocket.

Like Kristen mentioned, You'll feel a little better when you know that everyone is doing what they should be doing.

We'll be thinking of you
Tammy

[sonia]

It's so good to be able to throw a tantrum among friends! Whatever your final decision it is so important that you have all the information you need - if you need to throw a wobbly at people to get that, then so be it!
We'll also be thinking of you and Gillianne and pray for clarity and peace about what you should do.
Sonia.

[laurie]

Chelsea, just wanted to let you know you are in our thoughts and prayers as the biopsy approaches. Hopefully you will then have all of the answers you need!! As Kristen says.....crossing everything!!

Laurie

[kristen]

Yes, we too have you firmly in our thoughts, and hope that this brings ALL the answers and information you need to get that little sweety to 'normal'!!!!!

Please update us when you can! I assume results will take some time, but please let us know when you are all home and breathing easier!

[[[[HUGS]]]]

KJ

[Chelsea]

Thank you everyone for the well wishes. After spending several hours at the hospital this week I am finally prepared for tomorrow morning. During our pre-op I met with a ARNP that really helped organize things, including allowing me into the OR until she is asleep via mask since she cannot have the oral versed. She said she would be with us for our surgery as well. I feel better having someone on my team that stopped to listen to her story.

I will update you when we get home, which barring no complications will be Wednesday. Thank you again, for all the support over the past 10 months, you have all made a tremendous difference in her health and my mental well being.