Tue 22 May 2007
Doctor Luck
Posted by Jane under Updates
[20] Comments
I am not a doctor basher. I have been thrilled with the level of care that Ramona has received, the folks at Children’s Memorial saved her life. But yesterday I had my first really disappointing experience with a new specialist. We met with Dr. Luck, a pediatric surgeon, about doing Ramona’s G tube surgery. I kept thinking during the appointment that she should have kept her maiden name, which I can only assume was Downer. Or Tough, in which case she should have hyphenated.
She said a few things that bothered me. She said that this surgery runs a high risk of a complicated recovery. That didn’t bother me because I realize it is her job to inform me of the risks of surgery. What did bother me was her insistence on doing a barium GI study to check for “abnormalities of the stomach and intestine”. I told her that as far as I knew there were about 185 things associated with 22q, but that wasn’t one of them. Also she insisted that she would need to be cleared by the geneticist to go without food for the few hours before the surgery. I still cannot figure out what the geneticist has to do with that.
But most of all she kept referring to Ramona as “these children”. As in, “These children have a lot of problems” and “With these children if you see one problem you look for two and if you see two problems you look for 4 or 5”. I see a problem lady. A big one.
So we’re back to square one. She will likely not consent to the surgery without the GI study and I will not consent to the GI study until someone can convince me she needs it. So I’m back in line to wait for a consult with the first super-busy surgeon. Her first available is in July, I’m hoping she will see Ramona before that.
Ugh. The chinese food we got last week came with an extra fortune cookie, so I opened it for Ramona. It said, “You will make many changes before settling satisfactorily”. So, we’re making many changes. But we’re only settling if it’s “satisfactorily”.
Here’s a pic of Simon, looking as astounded as I felt during yesterday’s appointment.
Dear Ones,
I’m sorry to learn that the surgical consult was unproductive. Or was it? Maybe something wonderful will come of it, in time.
I hate to sound like a broken record, but you do have great instincts for parenting your children. They are in good hands: yours & God’s!
Another great picture of Simon!
I join my prayers to yours for Ramona’s healing & for the next best step forward toward that end.
I am not sure how a barium GI helps understand abnormalities of the stomach and intestines. We have only heard of a barium test referred to as a MBS (modified barium swallow). It is used:
“To evaluate the swallowing process for people who are having problems speaking or swallowing food without aspirating it into the windpipe”
With Caden it has been a great measurement of whether he is getting anything to his stomach. Since he has continued to have trouble swallowing even the smallest amounts of liquids, including saliva, we are now at a full 2.5 years with a g-tube and not even a drink of water by mouth. He seems to have written a new chapter in the medical journals on the swallowing difficulties so don’t base your expectations on how long the g-tube will be needed as a result of his case. Caden will get another MBS this Friday to see if his swallowing status has changed before his scheduled palette surgery at the end of June. Given the amount of suctioning we have done in recent weeks, I can guess the results.
The need for the GI study is supported by the list of 186 things. Number 112 “Feeding difficulty, Failure-to-thrive” and 123 “Velopharyngeal insufficiency” are related to the swallowing issues. The VCFSEF.org web site contains the fact sheet (186 things list). Here is a link to the PDF file if you have not seen it yet:
http://www.vcfsef.org/articles/en/pdf/factsheet.PDF
I would encourage you to go forward with the MBS to get a baseline of where Romona is from a swallowing perspective. The results will prove to be very helpful information for determining how much her swallowing has improved in the future as a result of any procedures you might get done to address swallowing functionality.
I say it again…Ramona and Simon are so incredibly fortunate to have such intentional and loving parents…keep up the fight, guys! do not give in to the “system!”
Jane, good for you. Not the outcome you were hoping for, but you are sticking with your principles and following your gut. No one who calls your baby “these children” should be allowed anywhere near Ramona with a knife.
BTW…I am a firm believer that all hospitals have there strengths and weaknesses. We have found our local medical university of SC to be weak in genetics and pediatric GI. They are very strong in pediatric heart surgery, ENT, immunology, and endocrinology. The other things like orthopedics, general surgery, and inpatient services fall within the average ratings for us. The thing that MUSC does the worst at is the overall coordination between departments. We are our child’s best advocates. Stick with that gut instinct. It can save your child’s life when the left hand of the hospital is not talking to the right.
Thanks Hank for the clarification about the barium study.
I may rethink that. I’m not sure why I had such a hard time communicating with this doctor. But if the next doc recommends it too, we’d probably go for it.
One phone call at a time 😉
I’d like to smack Dr. Luck on the back of the head. Sounds like she’s only looking at people as a condition. What happened to her soul? Maybe it’s a pit of darkness! 😉 Just kidding. Seriously, though… Sorry the visit didn’t go well. I guess you’ll just have to stick it out and hope that all of this happened for a good reason.
I had a great dream last night that Ramona was crawling around with no tubes chasing Simon outside and you and I were laughing. I woke up smiling because no matter what happens, Ramona is a happy girl who is full of life, and I’m thrilled and honored to be able to hang with her.. and you guys of course!
Love you!
One day last May I was visiting Sara at the hospital. Following an afternoon of conflicting diagnoses and bad news, she tearfully shared with her surgeon her profound dismay and disappointment about “the left hand not knowing what the right hand was doing.” Her doctor apologized and said, “I’m sorry, but unfortunately, you have to be your own best advocate.”
Keeping you and Ramona Mae in prayer.
Withlove,
Jackie
Jane
Listen to you instincts and get a second oppinion. Doctors don’t know everything. If your “gut” is telling you something, go with it.. believe me Mothers do know best sometimes. You have saved you daughters life, and I think your instincts are right on.
Love
aunt Ro
Hi Jane,
I am sorry that Dr. Luck had such poor communication skills. There is a prevalent defensive stance of many heatlhcare providers, and it unfortunately translates into to losing sight of sensitive communication with patients and their families.
Nathan had a barium study when he was nine mos. old to rule out a condition called Hirschsprung’s which can result in constriction of the intestines. It was a brief procedure, and he quickly let loose all of the barium medium in his diaper afterwards. I don’t know if that is what they would be wanting to do… Did the doctor want to observe Ramona’s swallow ability or look for intestinal abnormalities?
As always, we think of you often. Stay strong.
Love, Tina
Oh, Jane, how frustrating! I’m sorry.
Hope you get in to see the other Doc sooner than later. Praying for you all. With love.
Hello,
My name is Ramona also and I am Rachel’s Mom who sits with your children some nights. I am praying for “little” Ramona and think she is so precious. Your web-site is wonderful and prompts me to remember you in prayer. My heart goes out to you and your husband. Your faith and trust in God is such a blessing to see. May He help you in this new Dr. search for the right one who will see you in a timely manner. May God bless Ramona tonight and give you rest! Love ya, Ramona C.
Hi Jane,
Sounds like you got one of those doctors that has a poor bedside manner. I hate those. They treat you like a thing and not like a mother with a sick child who happens to be a real person. They should have a class in medical school to teach these ‘doctors’ how to talk to patients.
Hang in there and we’ll pray that Ramona gets seen by the Super Doc soon.
Judy
I should add that I’m not feeling nearly as snarky today but do still feel that I’d like Ramona to see another surgeon…Sorry Dr. Luck, I think we were both having a bad day 😉
I am usually a great believer in people having appropriate names (like a great doctor I had named, Dr. Smart. And she was). Dr. Luck ruins my theory (which was weak to begin with, but still, bummer).
I agree with everyone’s comments that you have been, and are, a wonderful advocate for Ramona. Maybe you have more questions? Maybe you need the other doc’s opinion? I know it’s frustrating when your nice little plan gets a fat hole poked in it. Keep on keeping on Jane – there is a “satisfactorily” answer out there.
love,
molly
PS – glad the poncho survived!
I am sorry you did not get what you wanted from the doctor, I agree if you don’t feel right with that doctor to seek out another because you want what is best for your child always. I read Ramona’s story and find that we have some simulaer storys with our girls, Izzy was dx at 6 weeks in the ER with IAA after doctors ignoreing my worries about her. She was admitted at the er and sorronded by the team that worked for over 12 hrs tring to stabilize her. I was a mess still am sometimes Izzy is now 14 mths old:) after her heart surgery they did not know if she would make it, she had echmo next to bed. She did make it and with out the assistance of ECHMO and she hass been gaining ground every day. she was sent home with poor heart function and we waited for her heart to heal and get stronger. she had another emergency cath because she had narrowing at her repair site and then she was dx with PHACES syndrome and has many more surgeries to help keep her airway open. it is hard to see her have surgery’s even if they are not as sever as the heart one it is still frightening ever time and she always amazes up with her smiles right after waking up! her story is at http://www.phacesassociation.com/
Jane,
Get a second opinion, if you can. There are tons of pediatric GI’s in the Chicago area…the G-Tube surgery was well worth it for our daughter-one less tube. Check around the area and see if you couldn’t get another GI consult for Ramona. We go to Lutheran General. There is a doctor there that people seem to like- Dr. Garcia.
Jenni Belmonte
Jane,
Email me privately and I’ll give you Dr. Shpritzen’s email. He’d be the first person I’d go to with these questions.
Trish
How frustrating! It’s amazing that as parents of “these children” we are able to put up with “these doctors.” I don’t like her, not one bit. I was trying to remember if Drew had that done before his g-tube but I can’t be sure. I know he did have a swallow study, but that was to make sure he could take food by mouth without aspirating. Great job advocating for your child! I am proud of you!
I’m still lurking and praying sporadically and wanted to give my 2 cents worth from a pharmacist’s viewpoint. A barium GI is very similar to the barium swallow. They just watch the barium via x-ray longer to see it make it through the stomach and upper intestines. I agree it was bad manner to call your precious Ramona just “one of these children” and to just assume the worst, but this test would be to make sure there are no surprises before they go in to do the actual surgery. But it’s always best to pick the surgeon you’re most comfortable with & trust those instincts!
Sorry for the delay in the reply, I read your entry the 24th & debated whether to reply or not.
Blessings and prayers! Heather