Well, yesterday was interesting to say the least. The Dr. came in and asked, "Why am I seeing your daughter?" I was a bit taken back. I suppose because of all the scampering and rushing around to have this arrhythmia looked into, her file wasn't the most complete it could be. So after a brief exam, he said Mikaela was perfectly normal. Her adjusted QT was normal, as was every other reading in her EKG. Subsequently, he heard NO murmer whatsoever. Nor clicking for that matter. hmmm. All that was recommended was that we come back in 6 months for a repeat EKG. Sure. I'm happy to do that. (Appointment is scheduled for May 5th.)
I am curious how two people could look at the same EKG, listen to the same heart and have two varrying outcomes.
Anyway. My NEW pediatrician feels that because of all the precautionary steps they took, (an echo cardiogram, referring Mikaela to the EP Clinic) and since the Specialist cleared her for surgery, she feels confident that all is well. She, like Kurt, believe that they were just being extra cautious due to the hearing loss. I understand that and always a proponent of 'better safe than sorry'. Maybe I was looking for a better explanation of why one week ago there were red lights, sirens, and a mad rush to Cardiology. Last week no cardiologist would sign off on her EKG. One week later, with the same EKG, all is fine. I suppose the normal results from the echo cardiogram is what maybe made the difference this week.
The new surgery date is December 8th.
Tuesday, November 25, 2008
Wednesday, November 19, 2008
Appointment Update
I received a call about 3:00 p.m. this afternoon. I have an appointment in the EP Clinic at 1:30 p.m. Monday!!! YIPEE!
Ironically enough, I had just drafted an email to Dr. F. asking for intervention on our behalf. (The thought of waiting until March had me totally freaked out!) I was actually proofreading it and ready to press send when my cell phone rang. Kurt was working using the house line. Luckily my cell phone was in the files. In addition, I happened to have it nearby because I rarely answer it!
We'll keep you posted on what we learn! Have a wonderful weekend with your families.
Ironically enough, I had just drafted an email to Dr. F. asking for intervention on our behalf. (The thought of waiting until March had me totally freaked out!) I was actually proofreading it and ready to press send when my cell phone rang. Kurt was working using the house line. Luckily my cell phone was in the files. In addition, I happened to have it nearby because I rarely answer it!
We'll keep you posted on what we learn! Have a wonderful weekend with your families.
Tuesday, November 18, 2008
CI Surgery Day 11/17/08....um....not so much....
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???)
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???)
Tuesday, November 11, 2008
Hearing with a CI
I just read this post from a mom on one of the list serves to which I belong. It is very interesting and it may help us understand what Mikaela will and will not hear with the CI. Some of you have asked me how will her hearing be different than natural hearing. This does a good job of creating a visual picture what I understand hearing to be with the CI.
This is a quote from Dr. Patricia Spencer:
I'll try to make a visual picture that relates to the way sound is heard by a child with a cochlear implant. Suppose that you have to identify a four-legged animal, and you've not seen that animal before but you have to figure out what it is. Maybe you have to draw it. Maybe you have to learn the name for it. Now that animal is standing in back of a bunch of trees. To see that animal, you have to look through tree trunks that are hiding big parts of that animal.
Now, if you were looking through those trees with the equivalent of a hearing aid, you could probably only see the tail end of that animal because you could only hear the low frequencies with that hearing aid. With a cochlear implant, though, you can see pieces of that animal's head, pieces of its neck, its legs, its body, pieces of its tailend, but you still are missing pieces in between each of those that you see. The reason I'm bringing this up for you to think about is because it'simportant for us to realize that children who are using cochlear implants still don't see the whole animal. They see more of a range of that animal but they have to use their brains. They have to use what they already know about the world. They have to use their cognitive abilities to fill in those gaps to be able to put together a picture of that whole animal. That's the kind of task that a child is facing using a cochlear implant. -Dr. Patricia Spencer, Professor, Department of Social Work, Gallaudet University
The sounds Mikaela will hear are not as rich and full as normal hearing. I often describe it to be like a transister radio from 'back in the day'. I do understand that the brain can learn to fill in what the CI doesn't deliver and I am hopeful that as technology increases over the years that it will improve for her. I am very interested to hear what you think of this. Please feel free to comment.
This is a quote from Dr. Patricia Spencer:
I'll try to make a visual picture that relates to the way sound is heard by a child with a cochlear implant. Suppose that you have to identify a four-legged animal, and you've not seen that animal before but you have to figure out what it is. Maybe you have to draw it. Maybe you have to learn the name for it. Now that animal is standing in back of a bunch of trees. To see that animal, you have to look through tree trunks that are hiding big parts of that animal.
Now, if you were looking through those trees with the equivalent of a hearing aid, you could probably only see the tail end of that animal because you could only hear the low frequencies with that hearing aid. With a cochlear implant, though, you can see pieces of that animal's head, pieces of its neck, its legs, its body, pieces of its tailend, but you still are missing pieces in between each of those that you see. The reason I'm bringing this up for you to think about is because it'simportant for us to realize that children who are using cochlear implants still don't see the whole animal. They see more of a range of that animal but they have to use their brains. They have to use what they already know about the world. They have to use their cognitive abilities to fill in those gaps to be able to put together a picture of that whole animal. That's the kind of task that a child is facing using a cochlear implant. -Dr. Patricia Spencer, Professor, Department of Social Work, Gallaudet University
The sounds Mikaela will hear are not as rich and full as normal hearing. I often describe it to be like a transister radio from 'back in the day'. I do understand that the brain can learn to fill in what the CI doesn't deliver and I am hopeful that as technology increases over the years that it will improve for her. I am very interested to hear what you think of this. Please feel free to comment.
Thursday, November 6, 2008
2 hour CI Info meeting
Today we had our two hour informational meeting about expections with getting a CI. Not so much about equipment or surgery, but more about parental support, learning to listen, setting our expections of performance after activation, advocating for her needs once Mikaela reaches school age, and the like. It was really good to know that CHOP has such an extensive support network in place for their hearing loss kiddos.
Because of the fact that I work part time from home, I have more time than others may to research all this stuff. Most of what was shared I already knew, but it is good to hear it again. The content that I do not yet know is what the law says about her rights and entitlements in the school setting. I am aware of which services Mikaela is eligible to receive from 0-3 through Early Intervention. Since I have a few other things to work through with her presently, I am just enjoying the moment now. I don't plan to concern myself with those details just yet. She just turned ONE...for Pete's sake!! CHOP made it clear that they have classes and information on this topic that we can attend/receive as time goes by.
We did go over quite a bit of things to do at home for habilitation. That part was kind of fun and actually got me more excited about this whole process. There were video clips of some CI kids in their therapy sessions and it was very emotional for me to see the progress they were making.
We spent a bit of time dicussing Deaf culture, ASL, NTID, Gallaudet and how the CI fits in today. Then we speculated a bit about how the CI may play a role there in the years to come. This part was valuable to me as you know, this is where my struggle lies. Our presentor had her views based on 41 years in the field. She was strong in her conviction. Some of the things she said made perfect sense and other things were said of which I did not agree.
I also want to share that yesterday, I did go to another pediatrician for a second opinion on Mikaela's GI and developement issues. I loved her!! We will be switching in December - after surgery. No need to switch now and cause any snafus with billing or whatever!! Plus the girls are due for part two of the flu shot at the end of the month. We'll finish that where we are and start new next month. I look forward to keeping you all updated with that!
Well, this has been on heck of a week. I am spent. I have some preparation to do for a call I have in the morning. Good night to all of you and 'talk' to you soon!
Because of the fact that I work part time from home, I have more time than others may to research all this stuff. Most of what was shared I already knew, but it is good to hear it again. The content that I do not yet know is what the law says about her rights and entitlements in the school setting. I am aware of which services Mikaela is eligible to receive from 0-3 through Early Intervention. Since I have a few other things to work through with her presently, I am just enjoying the moment now. I don't plan to concern myself with those details just yet. She just turned ONE...for Pete's sake!! CHOP made it clear that they have classes and information on this topic that we can attend/receive as time goes by.
We did go over quite a bit of things to do at home for habilitation. That part was kind of fun and actually got me more excited about this whole process. There were video clips of some CI kids in their therapy sessions and it was very emotional for me to see the progress they were making.
We spent a bit of time dicussing Deaf culture, ASL, NTID, Gallaudet and how the CI fits in today. Then we speculated a bit about how the CI may play a role there in the years to come. This part was valuable to me as you know, this is where my struggle lies. Our presentor had her views based on 41 years in the field. She was strong in her conviction. Some of the things she said made perfect sense and other things were said of which I did not agree.
I also want to share that yesterday, I did go to another pediatrician for a second opinion on Mikaela's GI and developement issues. I loved her!! We will be switching in December - after surgery. No need to switch now and cause any snafus with billing or whatever!! Plus the girls are due for part two of the flu shot at the end of the month. We'll finish that where we are and start new next month. I look forward to keeping you all updated with that!
Well, this has been on heck of a week. I am spent. I have some preparation to do for a call I have in the morning. Good night to all of you and 'talk' to you soon!
Tuesday, November 4, 2008
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