Dear Doctors,
Maxime Petion is a 21 year old that was operated at OSF in 2002. He had a #27 CE pericardial valve put in his mitral position.
He has done well in Haiti until this year. He had a CVA on Oct. 5 which hit his speech center in his left cortex. He is much improved from a neuro standpoint. He talks and walks on his own. His strength is good in his right arm and leg 4/5. His speech is very good. Some motor aphasia but no receptive aphasia.
His exam today: 110/94 right arm. Bifid pulse at right brachial. Respiratory rate is 40 at rest. Able to lie flat without problem. Dyspnea on exertion but climbs steps well. Heart rate is regular about 80. Not in atrial fib. Neck--no JVD. Lungs diminished tones at right base. Chest xray in morning. Heart: 3/6 holosystolic murmur left sternal border about 6th ICS. PMI at 6th ICS midclavicular line. I think I hear a right sided S3. Could not hear a diastolic murmur.
Abdomen: liver not enlarged or tender. No ascites. No jaundice or icterus.
Echo today: Severe calcificed mitral stenosis with 31 mm gradient across mitral valve. Some MR. Moderate AI. Right ventricle and right atrium enlarged. Significant TR with RV pressure measured at 77 mm hg with PAP estimated at 87. Big left atrium. Normal size LV. LV has EF of 44%.
I have him on the usual stuff to try and keep him alive. Seems like mainly RV failure with high pulmonary pressures secondary to MS. No thrombus noted after stroke. I have him on ASA. No coumadin to give him now. He is alert and totally coherent. Good appetitie. My wife and I have him in our room with us.
I e mailed Sister Judith Ann and others several weeks ago about Maxime with no answer as usual. (Dr. McShane sent me an email a couple of months ago indicating he was blocking my e mails. So much for open and honest communication at OSF.)
Need your help. What should I do? Please ask Kramer and Steffen and Doug Marshall to come to their senses and accept these kids back that should not be denied care. (I know the Sisters have little say so.)
Thanks. His picture and quick video attached.
John
Dr. John,
ReplyDeleteI just read with horror the medical info. you posted about Max. My heart has been very burdened for Max and his family. I just feel such a responsibility for him. Ever since he left, I feel like have failed him. My desire was to be able to maintain connections and help him and his family. I feel like there is so much we could be doing for them, but keep coming up against walls everytime we try to work something out. Our connections always seem to fall through. About the only postive thing we've been able to do for Max is pray, and that will continue. Please tell him how much we love him. He is so much a part of our life, and it grieves us that things have to be the way they are. Recently,(totally unaware of Max's failing health) I have been sending out emails trying to get help to Max and his family. Trying to set something that would work up. I'm going to keep trying. Please tell me it is not to late for Max.
The Johnson family