On New Year’s Eve my son was diagnosed with ASD. Being a nurse I know the medical aspect of this condition, which I think is doing more harm than good at this point. We have our first appointment with the cardiologist on January 20th. I know I’m going to be a nervous wreck so I’m trying to get prepared ahead of time. I’ve written a list of his symptoms, questions for the doctor, and researched treatment options. Does anyone have other suggestions or advice to better prepare me for the appointment.
Thanks!!
Hi Mia!
and welcome to this forum, u Will not be alone in this journey…
I can imagine how you are feeling since my 27 year old sister was diagnosed with a fenestrated asd for 4 months ago and underwent oppen heart surgery for 2 months ago.the surgery went great but i am also a medical doctor so i know what you are going through and how your knowledge just adds stress than helps you.I wont lie to you it isnt finna be àn easy period of your life but trust me the worst period is now that you haven’t had the consultation. Once u know if your baby needs the correction and when (because maybe the doctor will want to wait and see if it closes depending on the size of the defect) you will calm down.The truth is that everything is worse in our imagination and blown out of proportion because of our medical knowledge.
This beeing said i can give you the questions i asked our surgent (of course many of the questions are for a patient that will be operated which might not be your babys case)
1.what examinations must be done before eventuell operation?laboratory,TEE,MR,EKO?
2.If oppen heart surgery Pericardial or Dacron patch closure?
3.Postoperative TEE or normal is it performed?
4.B blocker drugs?yes or no?initiation?duration?
5.Type of incision(under breast or middle?).Risk of conversion to a more invasive approach or inadequate repair?
6.Antibiotic profylaxis?
7.Can u have numbness in the area?
8.drugs?how long?dosage?
9.When does the pain subside?When do u feel normal again?type of pain killers?
10.How many days does one stay in hospital?in ICU?
11.Are any drains left?how long?
12.Follow up?
i know its very scary right now but it is important that it was discovered and it is a problem that can be solved!i wish you all the best and I hope I have helped…
Hi Mia,
I don't really have anything to add regarding questions but I did want to send you positive vibes. I had a ASD closure in 2011. All went well but I was a nervous wreck when I found out. I can't imagine the feeling when it concerns your child. The good thing I have learned through this website and other readings is that the care you can get nowadays is awesome. Stay strong and find ways to manage your stress. Your child will feed on your strength and get through this perfectly.
Hi Mia,
When my son was 11 months old he was diagnosed with ASD. As an infant, we noticed that he sweated a lot on his head and he was not gaining as much weight as he should when I was nursing. I was closely coached via the lactation nurse for three months with constant
weight checks and was told my the pediatrician that based on our genetics, Ethan would be a smaller baby. I was miffed cause Ethan is my second child and I kept on harping about the sweating and lack of weight gain until finally the pediatrician had heard a heart murmur. I was told that they are harder to detect when a child is sick. The cardiologist said Ethan’s was especially hard to listen for and that we were fortunate the pediatrician heard it. Ethan had a lot of the symptoms of ASD. Always tired, sat up late and walked late. Ethan also was on the medication, Lasix.
In May 2013 at 18 months, Ethan had open heart surgery. We attempted to fit him with the amplatzer device, but the team of doctors saw that he had no sustaining tissue along the bottom rim. Within a week in a half, OHS was performed cause we pushed for it…and the team of doctors who attempted the amplazter device supported us(Ethans cardiologist is part of this team).
Ethan has been sick a lot. He had pnemonia several times and had asthma too. Keeping him healthly was a challenge. Ethan had stopped gaining weight too. From August 2012 - May 2013, Ethan weighed in at 17 lbs.
We selected Children’s Hospital in Los Angeles for OHS. We met the surgeon on Monday, surgery was scheduled for Wednesday and Ethan was discharged on Saturday. I took off 12 weeks off work to care for Ethan.
Post surgery, no lifting the baby, along his underarms. Keep the stitches clean and dry until they are removed. Ethan is now 26 months old and weighs 23lbs. He is such a happier baby, eats more and has not been sick with pnemonia since the surgery. He’s gradually catching up.
I think you are doing the right thing by listing all of your son’s symptoms. Based on the severity of ASD symptoms, OHS and Amplatzer devices are done when children are around toddler age 3-5.
I hope this info helps you. You’re in my thoughts and prayers. Its a challenging journey…but the bright side is that ASD is a curable diagnosis.
Anne…
Hi everyone
I can totally relate to Mia and Anne. My son was diagnosed with ASD secundum at 8 months old. He was contantly ill, not gaining weight and now (at 14 months old), he is scheduled for OHS next month! He also had pneumonia a few weeks ago and based on that the cardiologist decided to do the operation ASAP as the right side of his heart seems enlarged.
Being a first time mother this has been a very scary journey for me. Sometimes I feel so alone because I dont have anyone around who truly understands how scary this is. Thanks for this group, it makes me feel better knowing there are people out there who know what I am going through.
Good luck to all of you and I hope that all of our loved ones will come out of this healthier and happier.
Natasha