Our plans to get Whitney's ears and sinuses feeling healthy again have hit a major snag. The ENT and the hospital have been working with us since Friday because the anesthesiologist refuses to work on Whitney.Once the anesthesiologist caught wind of Whit having 1p36 Deletion Syndrome, he said he was not willing to intubate her for the part of the procedure to remove her Adenoids. He felt she was too high of a risk.
Melanie and I are not happy about it and have tried to get records from her previous surgeries sent to this doctor's office to prove she does just fine. She's even been intubated before during her eye surgery. Everything went great. But Whit's records from those surgeries are boxed up in the local children's hospital archives and couldn't be sent in time to convince the anesthesiologist.
The hospital won't release this uncooperative doctor's name so we can contact his office. And when we suggested rescheduling during a different anesthesiologist's shift, the nurse said it wasn't worth it. They talk amongst themselves and would take a united front not to treat Whitney.
The claim is that they do not have the equipment necessary if something went wrong. I'm no doctor but I can understand their concern. Anesthesiologists are some of the most sued doctors around, so they play it safe. But we're talking about a hospital that was just opened a year ago. It's the largest and most modern facility in our state. Their claim of not having equipment just doesn't seem to hold much water.
But no matter. We're back to square one. We'll need to find a new ENT (again) with rights perform the surgery at a different hospital. Then we'll go through the checkup process again and hopefully the ENT will agree to the same course of treatment. Then we'll reschedule the surgery. This will consume additional time and money, which doesn't excite me. But the worst aspect of all this is that my little girl will continue to suffer from sore, plugged ears and possible sinus infections while we navigate the red tape.
Anyone out there have any suggestions? Sorry for the rant. It's tough for me to sit there and take it when another person's decisions take a toll on my child's well being.
7 comments:
Nate,
I'm so sorry that your family has go through this ordeal. It just doesn't make much sense considering Whitney doesn't have a past history of intubation or anesthesia issues. I would try to talk with the chief of anesthesia or check to see if there is another group that may cover her anesthesia. I can't imagine they don't have the proper equipment..they have PICU right? I think once they get the old records it will ease their minds. Also I would definitely educate them on 1p36..provide their group with handouts. I use to work in the O.R. as a circulating RN in an adult hospital. I know at a children's hospital things are a lot different..everyone more cautious. I would keep trying until someone feels confident enough to pick up her case. Everyone has their own opinion and their own confort levels. I would definitely keep trying and ask around. You can always request a certain anesthesiologist as well..maybe the last one who performed Whitney's last surgery. Hope everything works out.
Good luck,
Sherry Culvahouse (mom of Kaylee almost 10 mo/1p36 & Allison 5 yrs)
Nate,
I am in shock that a hospital would refuse to do surgery for Whitney! If every hospital took a similar stance, no one with special needs would ever have their medical needs met.
I guess all you can do is try with another hospital and hope they take your insurance. Or... have a friendly attorney give the chief of staff at the hospital a call. We have to choose our battles though and the most important thing is that Whitney gets her surgery.
Good luck and keep us posted. Give Whitney a hug for us!
p.s. we will be in Utah for 2 weeks in late July/early August and would love to get together again if you are all in town (it is around the same time as the 1P36 conference). I'll email you when we get closer to the dates.
sorry to hear about your setback. sophie has had tubes put in 4 times and tonsils and adnoids out. she was intubated twice and has had several sedated mris, abrs and other under sedation procedures. if one doc wont do what you want/need, there are others. i hate to say this, but some docs have that God complex. if they only know how great Heavenly Father was, they would back down and humble themselves to a more human form. good luck and our prayers and best wishes will be with your family and mostly with your precious little perfect beautiful Whitney.
kim and sophie
That's gotta be frustrating. It ticks me off just reading about it. Grrr! Options that came into my head:
1. Become a nuisance to the hospital administration until they get the uncooperative ninny to re-review Whitney's info showing that she is fine. The lack of equipment sounds like a really flimsy cop out.
2. Go somewhere else, like Primary Childrens, or UVRMC.
3. Complain to the media.
It's a sad thing that a lot of health professionals these days only follow a modified Hippocratic oath: Do no (potential) harm (to myself).
Hey, when Kajsa and Brady come to UT, give us a call. That would be great to have a mini 1p36 get together.
Thanks everybody! We're just going to start over with a new doctor and a new hospital. Things should work out.
Let's have a get together for local 1p36 families sometime in July for sure. Kajsa, if you guys don't mind, email me when you'd like to get together and I'll see if Josh's family and Tressa's family and any other locals can join us.
Nate,
So sorry you all have to go through this again. As if it isn't bad enough that you have to prepare for a surgery..
Sammies never had any problems with anesthesia either. I do know they are very cautious and tend to do what the last anesthesiologist did =)
I hope this works out for you guys. Take care
nate, we just found your site and have a son ( 8 months old) with
1p36 - diagnosed at 1 month. We would love to be included in the get together and meet other families with this syndrome. We live in Layton Utah. Please e-mail us at sunshineinut@yahoo.com thanks amy & jared montoya
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