As you know, we were scheduled for Mikaela's CI implantation surgery yesterday. Our arrival time was 6:15 a.m. Oye! Kurt is definitely not a morning person and I am...but not THAT early! We managed to arrive at 6:30 to the check in desk. Not too bad...
We got called back to the prep area and the nurses took the vitals. The anesthesiologist (Dr. H.) walked by with a big Dunkin Donuts cup of coffee. Good! Let's have everyone awake and on their best! About 7:30, Dr. H. came in and said he wanted to repeat the EKG. That took about 7 minutes to have them come back, hook her up and take it. During that time, the surgeon came in, marked Mikaela's right ear with an "X", explained about post op expectations and stepped out. Then the anesthesiologist came back in at a moment that Kurt happened to step out to the men's room. He asked where Kurt was and then said he'd be back to talk to us when Kurt was back. I said, "Why? Is the surgery off?" He replied yes. When I asked why, he said...."I'll tell you when Kurt gets back." He then went off to the nurse's station to let them know the situation and to begin prepping the next patient.
By this time, Kurt returns and I say, "The surgery is off." First he said, "Are you serious?" To which I responded I was. He then was like, "What?? Why?" I said I didn't know and that the anesthesiologist would be back to tell us why when you return from the men's room. He was desperately searching my face for some kind of smile, thinking there must be a punchline in here somewhere....nope. I was serious.
The anesthesiologist returned. He regretted to inform us that he didn't like the EKG that was taken 1/31/08. He explained to us about a QTc reading. This occurs during the repolarization of the heart. He described it as such: The heart constricts to beat, then relaxes, then it resets itself electronically to zero to accept the next electrical impulse to cause the next beat. Mikaela's heart was taking a bit too long to reset to zero. The repeat EKG from surgery day 11/17/08 was better, but because of the first one, he wanted her to be seen by a cardiologist. I told him that Mikaela had surgery on 1/31 when the first EKG was taken. He was shocked. He said, "She had surgery with this EKG?? I explained that yes, it was a life-threatening situation and they had to operate to save her. He then noted that emergency and elective surgeries have different parameters. There was some conversation of regret that we were not notified earlier....(um....how about like maybe back in January/February when we were in the hospital for 3 or 4 days!!! - Could have been good!!) He referred us to a cardiologist that agreed to see us that day since they felt bad for the lack of earlier notification.
Our appointment was scheduled for 9 a.m. Of course it took this doctor about an hour to see us and Mikaela had luckily fallen asleep. (We'll call the Cardiologist Dr. F. because it is getting too confusing and takes too long to type when I refer to them by degree) He took background information from us since Mikaela had an empty Cardio file. Then he listened to her heart, looked at the two EKGs and shared with us his thoughts: He said he heard a "very, very slight murmur" and "some intermittent clicking." The clicking may or may not be a valve. It may be that due to her age and the walls around the heart not being as developed as they are in older children and adults, he may just be hearing more than typical. Dr. F. wanted to have a complete work up on Mikaela and managed to finagle the schedule for an immediate echo cardiogram.
We were in that office by 11 a.m. Mikaela did really well, considering it was a 40 minute test and she hadn't eaten since 7 p.m. the night before! Once the technician took the portion of the study from the lower part of the heart, she let us feed her while she took more pictures. That helped a bit, but we had to take a few burp breaks!
Back to wait for Dr. F. to give us the preliminary results. He said, there is a syndrome that is called Long QT Syndrome that can present with deaf individuals and Dr. F just wants to rule that out. He said that today's EKG was much more 'normal' but there was one measurement that was "borderline normal" and he wants to have a complete study done before he would okay a surgical procedure. Dr. F. said if a normal hearing child had the same EKG it probably wouldn't have raised a flag. But due to the hearing loss, he wants to be certain. I can appreciate that. To obtain confirmation, Dr. F. then gave us the name of another doctor who specializes in arrhythmia in children and noted on the paperwork to schedule a visit 'ASAP to the EP Clinic." Of course I had no idea what EP stood for and Kurt and I were making up all kinds of things! :-) Like....'Early Prevention' and 'Enlarged P***s'.... It actually means Electrophysiology.
At the desk as we were leaving, the clerk tried to schedule an appointment for us, but they were too full. I called when I got home and the secretary at the EP Clinic wanted to get the scoop on Mikaela's file, talk to the two docs and get back to me. She didn't get back to me by 4:30 p.m. so I tried again. They were already gone for the day. So guess who called at 8:04 a.m. this morning....yours truly!
The secretary was really nice. But at this time, the doctor to which we were referred (Dr. S.) doesn't have an availability until March. The partner (Dr. V.) may be able to reschedule something and get us in there in December. The secretary will check with them and get back to us. Sure....I suppose I'll check back in on Friday to see if we can at least pencil something in!!
I am wondering if I should find another pediatric EP specialist and see if I can get something done sooner. CHOP can send over Mikaela's chart...they can do their thing....send results back over to CHOP. Or...will this just muddy the waters? I can be a little patient, but not for long. Kurt thinks we need to just 'let the system work'. I am not feeling so confident in the system at this time considering Mikaela's EKG sat in her file since January 31. Maybe the system needs some oversight by ME!
Sidebar: I am transferring to a new Pediatrician today. I figure surgery isn't going to take place before the records get over to the new Ped. I'll update the insurance company and there shouldn't be any problems. (Like that positive intention, there???)
7 comments:
How frustrating! Hope you can get everything worked out soon!
Please get an appointment as soon as possible with Dr. S. My niece was diagnosed by her at age 13 months with long QT. This condition is potentially life threatening and should be treated ASAP. Dr. S has done alot of the research and has written the books on long QT. She is one of the top EPS in the country. If you have to, get the appt with Dr. V and then schedule your follow-up with Dr. S. Read more about long-QT on sads website. Just search "sads". Do not delay. My sister ( niece's mom) can give you alot of useful info about this. I can give you her email address.
I wonder if this guy is talking about Mikaela?
http://medschoolwilldo.wordpress.com/
I access this on the "google alert" for Long QT. You have to subscribe to it through google.
Thanks for all your support!
Hey, Sweet tarts...any tips on how to get Dr. S to schedule with me before March???? :-) I will call Dr. F. back tomorrow and see if he can pull some strings and bump her up....afterall, they were the ones who didn't catch this in January.
You can try to get Dr. F to help with the scheduling, but I don't think it will help much. We had an appt with Dr. S as a second opinion and she immediatley admitted our baby (Weesie) to CHOP to start beta blocker medication. Our experience with Dr. V is that he does not respect the long qt diagnosis as much as Dr. S does. By that I mean that we wanted to take NO CHANCES with this diagnosis and he tended to really we thought UNDER-ESTIMATE the risk. When it is a child, how do you do that??? So we got our follow-up appt from the hospital with Dr. V in the interest of having Weeise seen quickly ( she was having blood pressure problems with the medication), but then scheduled with Dr. S again and we will continue with her. I think with the deafness and the long QT, she should be put immediately on the beta blocker, and then proceed with the genetic testing. There is a connection between long QT with congenital deafness. Good luck to you. She is a sweet baby.
I'm so sorry to hear that! How frustrating! I hope everything gets worked out soon!
Hi Faith,
You are quite astute...yes, I had referenced Mikaela. I've tried not to mention anything identifying about patients or doctors, but if there's something that's too specific, just let me know, and I'll remove it. I know how important confidentiality is.
The study that's coming up, it's all preliminary so far, so I probably don't know more about Long QT than Wikipedia does at this point!
One thing I wanted to comment on is how right you are that CHOP has a wonderful support program for CI kids. CHOP is really a wonderful place to be, and I know that everyone takes great pride in taking care of the patients.
All the best,
M
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