Does anyone here have experience with these hospitals? I’ve talked to doctors at both (Dr. Puder in Boston and Dr. Mercer in Omaha), and a transfer to one or the other from Denver is fairly likely at this point, but I don’t know how to decide which one to go to. Could anyone who has experience with either of these hospitals (or both of them) give me some insight?
Good luck and I hope everything works out. If you all come out to Boston please let me know I would love to meet you! I actually grew up in Colorado and go back to visit my mom about once a year. Good luck and please feel free to contact me if you have any other questions.
We went to Boston for the CAIR (center for Advanced Intestinal rehab) when our daughter was 1 month old. We met Dr. Puder and it saved our daughter’s life. She was on TPN for the first 2.5 years of her life and her liver never got worse. She is a strong and pretty much normal almost 3 year old now. She is in the 75% for height and weight and has no developmental delays. All things that we were told to expect with a child with short gut. Dr. Puder is awesome and and great surgeon. Please feel free to call us if you want any more info. I have heard that Omaha has been in the process of starting their omegaven trial for a while now. But it is fully up and running in Boston. Also if you have problems with insurance paying for Omegaven Boston will help with that.
Wow, I can’t believe I got a response from you! I’ve read pretty much your whole blog, and I read about you guys on Max’s blog…
My gut is telling me we should go to Boston, I’ve talked to Dr. Puder a few times now and I definitely agree he is awesome, he always responds to me within an hour and she’s not even his patient. The Omaha trial was supposed to start last month, but the doctor there told me they’re still in the middle of the application process to start the trial. He did say that if the timing of the trial didn’t work for us, he would apply to get it as compassionate use for her, but from my understanding that can take quite awhile, and Dr. Puder has said we could get on it right away out there (and that our insurance has paid for it for other families).
I’m going to weigh the pro’s and con’s of each hospital that I can think of so far, and discuss it with my husband… and I’m going to talk to our case manager here tomorrow and see if our insurance will cover both options, or which would be better from that standpoint. We have a care conference with our team here tomorrow, and we plan to tell them that if she’s not to 75% of her goal feeds by next Wed. we want to transfer.
Just wanted to update and say that we have decided to go to Boston, pretty much against the advice of our doctors here (they want us to go to Pittsburgh for a transplant eval). I’ve talked to the social worker and NP out there to get the process started… meanwhile DD is “tolerating” higher feeds than she has since before her tapering surgery (although she is coughing and refluxing a ton, and threw up 3x between yesterday and the night before). I have a sneaking suspicion that I’ll go through all the trouble of getting a transfer arranged, upsetting our docs here, etc, and then she’ll get up to full feeds and not need to go to Boston at all!
Hey if that’s what it takes to get her on full feeds I say go for it!! Keep us updated.