Heart Defects

Someone sent this link to me about a boy with a heart defect who had H1N1.  He had to receive an experimental valve because the H1N1 affected his heart.  He was too ill to have OH but had to have a valve replacement.  He had a cath procedure to have the new valve implanted.  This article really underlies the need for heart kids to have the H1N1 vaccine.

http://online.wsj.com/article/SB10001424052748703932904574511950460773832.html

                                  Cheri

                    go to Heart Defect Information   

                           go to Nicholas' Website

                      contact me - cherir1@peoplepc.com      

   

                                  

            

               

            

                               

 

                                                

This made my morning task very difficult. I called the ped to see if they had the vaccine in, and was told it was only being given to kids w/ chronic conditions due to the fact they received so few. I said "My son has a heard condition" and was told that he would get put on the list for the SECOND round! What? I said "he has mild asthma", and she said "he's on the list for the second round. Seriously? I was so upset I called the health dept, who only had the mist and would get the vaccine soon and be giving it to all people under aget 24. So the ped can't wouldn't and I'd have to chance getting it from the health dept. DH called the ped and they said it was b/c Gabe's heart has been "fixed". Doug told them if it has had to be fixed twice and he needs more surgeries is it really considered fixed? His heart is structurally nowhere near normal, and sounds like a washing machine. He is not "fixed". Doug left message w/ nurse asking the ped to review the chart, and 10 mins. later they call back and Gabe has an appt for Thursday. I'm glad he's getting one but I didn't even think that it would be a fight at all. Healthy people, adults and kids, all over are getting these shots and it is very messed up that child w/ a rare and complex defect had a hard time. Any heart problem can turn deadly fast. Ugh. Vent for the day!~

Becca

I called the ped on friday to find out about the vacc - I was told they were getting them in this week and to start calling first thing on monday. I called at 8am monday - got put on hold for 13 minutes. hung up. called again the girl says we are swamped with calls please don't hang up. Got put on hold for 9 minutes then she answers and says I have to call back at 10 to schedule an appt because they are figuring out how many they have right now. I called at EXACTLY 10 am and got put on hold. She picked back up at 10:09 and told me they were only scheduling appts for the next day and all the slots had been taken. Then she says well you can try tomorrow.

This morning I dropped Hunter off at school and went to the ped's office. The girl at the front desk tells me she is not scheduling the shots and that I have to call - they are on a first come first serve basis. I explained (for the millionth time) about Dylan's heart problems. She says yes - we have lots of high risk patients. I KNOW Dylan is one of the only (if not the only) in their practice with this complex of an issue because whenever I call and speak to the nurse I explain to her who I am and she says oh yea - you're Dylan's mom. I asked her why they don't have a priority list and she once again tells me it is a first come first serve basis - I was PI$$ED. So I go outside and call - at 8:36 after the phone rang for about 10 minutes they FINALLY answer and tell me all the appts are gone and that I need to call back tomorrow to try to get in the following day. I yelled at her for a minute and then tried the health dept. I was only on hold for about 2 minutes total - they were super nice to me and I got both boys appts for tomorrow 8:30am to get the shot for FREE! I'm sorry I wasted so much time on his dr's office.

  

Aw man Becca, what a pain! I received a call from Reece's Ped's office the morning they received the first round of vaccines. My son got it the next day, and will have his second shot in 2 weeks. I think it's B.S. that they think your son's heart condition doesn't put him as one of the first people to get the shot! Maybe try calling another doctor's office? A lot of people here are getting H1N1 and it sounds horrible!

Good Luck!

Cathy, he got it this afternoon! I think the ped's office saw that he had surgery and assumed that was it, but it's not so simple w/ truncus! So I took him today. He HATES shots, we had to pull his pants down, lift him on the table, he was screaming like we were cutting off his arm but he got it. Not looking forward to the next surgery, he was 18 mos. last time and had no idea. Now he'll know about needles and pre op day should be fun. hopefully we have a couple years before we have to face that!

Becca