Dee
09-24-2004, 10:58 AM
It's been 5 months since Dylan's heart surgery and he's doing very well. I apologize for not being very active on the board lately - I think I've been kind of decompressing and adjusting, etc. I do check in every couple weeks though and hope to be more active again now. This board has been such a great source of information and support, I hope to be able to give back some of what I've received! I don't know if I ever gave Dylan's entire history, so...if you're not in the mood to read a novel - run away while you can!
Dylan was diagnosed with Hypertrophic Cardiomyopathy (HCM) at his 6 week checkup in 1999. After a very long weekend of worrying and reading very frightful things on the internet, we had his first echo and ekg and began treatment on beta-blockers.
His growth and development was normal up until January 2001 when he come down with endocarditis and suffered a major stroke. After a couple of weeks in the hospital, his recovery was nothing short of miraculous and he shows very little outward effects from this now other than being left-handed. To the untrained eye it probably is not noticeable, but his doctor has noticed slight weakness on his right side, however nothing that requires therapy. He relearned walking and his large motor skills rather quickly. His fine motor skills are a little behind and require encouragement to practice.
Spending several days in the PICU not knowing whether he was going to make it or not was an experience I can't put into words, however it really strengthened my resolve to be his advocate. His regular pediatrician had not recognize the petichae that along with his very high sudden fever were the tell-tale signs of a bacterial infection which led to his stroke. If I hadn't gone with my gut and kept a very close eye on him during the night to discover that he was unresponsive, we would have lost him.
We continued his treatment of just beta-blockers. In April of 2002 he had eye surgery to correct both of his eyes from turning in. His previous PC did an echo at that time while he was sedated for eye surgery and decided that he was suddenly NOT obstructed - failing to take into consideration that he was under anesthesia. After watching Dylan's symptoms worsen and not understanding why his PC didn't seem as concerned as I was, I requested his medical records. This is when I discovered that his PC had changed his diagnosis to non-obstructed HCM!
We took Dylan to see Dr. Towbin at Texas Children's and switched PC's to one he recommended. In April of this year his symptoms from HCM had progressed to the point where he required open heart surgery. His surgery was a myectomy and a mitral valve repair. At his last check-up in the beginning of September his echo showed a gradient of a whopping 13. :-)
So that's where we're at now. Dylan started school at Montessori a few weeks ago and absolutely LOVES it. I love it as well and the teachers have been very helpful and involved with learning about his condition and what to watch for, etc. It's a heckuva strain on us financially to be able to send him there but so worth it to have the peace of mind that he is in a calm learning environment with tons of one-on-one contact and watching caring eyes.
This site and message board have been life-saving for us and I'm grateful.
Dylan was diagnosed with Hypertrophic Cardiomyopathy (HCM) at his 6 week checkup in 1999. After a very long weekend of worrying and reading very frightful things on the internet, we had his first echo and ekg and began treatment on beta-blockers.
His growth and development was normal up until January 2001 when he come down with endocarditis and suffered a major stroke. After a couple of weeks in the hospital, his recovery was nothing short of miraculous and he shows very little outward effects from this now other than being left-handed. To the untrained eye it probably is not noticeable, but his doctor has noticed slight weakness on his right side, however nothing that requires therapy. He relearned walking and his large motor skills rather quickly. His fine motor skills are a little behind and require encouragement to practice.
Spending several days in the PICU not knowing whether he was going to make it or not was an experience I can't put into words, however it really strengthened my resolve to be his advocate. His regular pediatrician had not recognize the petichae that along with his very high sudden fever were the tell-tale signs of a bacterial infection which led to his stroke. If I hadn't gone with my gut and kept a very close eye on him during the night to discover that he was unresponsive, we would have lost him.
We continued his treatment of just beta-blockers. In April of 2002 he had eye surgery to correct both of his eyes from turning in. His previous PC did an echo at that time while he was sedated for eye surgery and decided that he was suddenly NOT obstructed - failing to take into consideration that he was under anesthesia. After watching Dylan's symptoms worsen and not understanding why his PC didn't seem as concerned as I was, I requested his medical records. This is when I discovered that his PC had changed his diagnosis to non-obstructed HCM!
We took Dylan to see Dr. Towbin at Texas Children's and switched PC's to one he recommended. In April of this year his symptoms from HCM had progressed to the point where he required open heart surgery. His surgery was a myectomy and a mitral valve repair. At his last check-up in the beginning of September his echo showed a gradient of a whopping 13. :-)
So that's where we're at now. Dylan started school at Montessori a few weeks ago and absolutely LOVES it. I love it as well and the teachers have been very helpful and involved with learning about his condition and what to watch for, etc. It's a heckuva strain on us financially to be able to send him there but so worth it to have the peace of mind that he is in a calm learning environment with tons of one-on-one contact and watching caring eyes.
This site and message board have been life-saving for us and I'm grateful.