|
I am new here and just want to introduce myself. I am 23 years old, and a stay-at-home mom of 2 boys. My oldest child (2 yrs.) was born perfectly "normal", and remains that way. My second son (6 months) was diagnosed at birth as having hypospadias (his peepee hold opens below the penis, not tip). He had surgery to have it repaired almost 2 weeks ago. Outcome is still unknown. We should know in about 2 more weeks. He was also diagnosed at 2 months as having shones complex (multiple heart problems). He had open heart surgery at 3 months to have coarctation of aorta, and supravalve stenosis repaired. The outcome for that has been great. He still has aortic, and mitral valve stenosis. If there are any parents out there who have a child with either of these things, and want to chat with a mom who is going through it too e-mail me at [email protected] or [email protected]. ↓
|
|
| Name: momo | Date: Nov 22nd, 2006 5:41 PM |
| Hi...I have a a 4year old born with critical pulmonary stenosis...Epstiens anomoly and ASD of the heart...He has had about 4 surgeries ..but 2 main open heart..the last one in August for a valve replacement...He finnally runs around like a little boy now..though I know its just a matter of time before we have to replace the valve...I am always looking for someone to chat with...its hard talking to family sometimes...My email is [email protected] ↑ |
| Name: mom_two_lil_boys | Date: Nov 23rd, 2006 2:42 AM |
| Hello momo! Was your son showing symptoms before they did any of his surgeries, esp. the first one? My son went for his 2 month check up and the doctor heard a murmur. They did a ECHO just to be on the safe side, and that is when they found all the heart defects. They didn't want to wait until his heart started failing to do the surgery. He wasn't showing any signs that there was something wrong. What was your sons first surgery? What did they repair/replace? Do you have a carepage at www.carepages.com? How is your son doing now? My son seems to be doing well, but the doctors think that as he gets older his valve will need to be replaced. You said your son had a valve replacement in Aug., but it is a matter of time before you have to relace his valve. Will you have to replace the same valve, or a diff. one? ↑ |
| Name: momo | Date: Nov 27th, 2006 11:52 PM |
I have emailed you this...but here it is again if you come on here...
Sorry it has tooken so long to reply...I don't get on much...But to anser your questions...When I was pregnant with my son I never knew he had any problems. I was a week and a half over due and they were talkin bout inducing me...but then they discovered he turnd breech at the last moment so they did a c-section..good thing they did...When he was born he turned blue right away and had a huge murmur...so they airvaced him to a better hospital three hours away...I didn't see him for three days...
There we discovered he was very sick....He had a cath surgery at about 12 days but it didn't work so he had open heart a couple weeks later to just repair the pulmonary valve...and see what else was wrong...they preatty much said it was temorary till he got older...So in April of this year they thought he was big enough to do another surgery...they did the cath again just to see what they where working with...and in August 9th they did open heart surgery...this time they replaced the pulomanry valve with a cadaver...repaired a hole betwwen the artiums and helped make his tricuspi valve function more normal...Though they did have complications and he had to be resesitated he made it through...
now he is amazing...I just think whenever we go to that park and he can now keep up with the kids howmuch i am so thankfull...He has also grown so much more now..and eats so much...its amazing what they did for him...Again though now having a valve replacement he will have to have one every couple years as the body natrually rejects valves...So i have to go through this for the rest of his life... though its been hard at times and finnacially exhausting...I feel like he was supposed to be this way...his spirit is different than most kids...I think you will see as time goes by that some how your child seems like an old soul....there is just something about them...
What are the outlooks for your child? do they expect him to lead a normal life? Did you go to a specialized childrens hospital? Hope to hear from you? ↑ |
| Name: mom_two_lil_boys | Date: Dec 2nd, 2006 3:17 PM |
| momo...My heart goes out to you and your son. My son just went in yesterday for his monthly cardiologist check-up, and his doc. said his valve has progressively gotten worse. We knew he was going to have to have another surgery as he got older, but we didn't think so soon. They are making an apointment to have an ECKO done while he is on meds. to make him sleep. That will determine if they can do the balloon cath. or if they will have to do the valve replacement. Regardless they think they will have to do the valve replacement sooner or later. I didn't know the valve is something that had to keep being replaced b/c of rejection. I like to have control over how things go, or at least know what is going to happen. It is so hard just waiting for the next surgery. It is really hard on me knowing his heart is going to get so bad that he needs surgery, and not being able to do anything to stop it. He should ive a "normal" life. He might not be able to keep up with a football team, and will need heart surgery(s) as he gets older. Other then that he should be fine. To answer your question about the hospital he had his surgery at, it was MUSC. (Medical University of South Carolina). It is the best children's hospital in SC. Luckily it is only 2 1/2 hrs from where I live. We have a friend of the family who is a retired surgeon, and his son is a surgeon now. His son did his residency at MUSC and he said it if his child was in the same position, he would take his son to MUSC. It was great They had a bed, shower, TV, internet, couch, and anything else I could have needed right in my son's recovery room. I stayed with him in his room the whole time. The even had a huge playroom for my 2 yr. old to play in. My 2 yr. old was there 8 days, and never had to play with the same toy 2 times. ↑ |
| Name: JJJWKT | Date: Dec 3rd, 2006 4:00 AM |
| My three year daughter had heart surgey when she was one year old for aorta valve stenosis. We finally made it to a year with out having to be at the cardlogists every three months. She is happy and loveing and acts like a three year old. I have yet to find anybody who else has to deal with these porblems. It's hard to believe this problem could kill her if we are not careful. I'm very thankful for the trust I have with our cardlogist. ↑ |
| Name: momo | Date: Dec 4th, 2006 8:31 PM |
I agree. I am so happy with our caridologists....and his surgeons also were so great..they were honest...and explained everything in lamens terms....
His last 3 surgeries were done at Phoenix Childrens Hospital in Phoenix, AZ...I love that place...They too had showers..a family room...Playgrounds...and plays station...He walked out of there with so many toys...The nurses were just awesome...they love there job you could tell....I Stayed at the Ronald MCdonald house..THey are also amazing...They were a life saver...As the firt round my hotel bills were $1800.00 till I moved in to the Ronald House...i stayed there the first time for about 5 weeks and it was only 300... ↑ |
| Name: mom_two_lil_boys | Date: Dec 6th, 2006 2:46 AM |
| My mom, 2 yr old, and I stayed at ronald mc D house too. Once my son was out of ICU I stayed w/ him and my mom n son stayed at RMD house. They were great. They had dinners and lunch donated. It was great food, and we sat and ate with other families going through similar things. At it help financially. We stayed in a hotel the first 2 nights and it was so expensive. We just found out today he is going in on Dec 19th for ECHO and 20th for balloon procedure (as long as that is what the doctors at MUSC agree is the best thing). He will only have to stay in the hospital 1 night. ↑ |
| Name: durgesh73 | Date: Dec 27th, 2006 6:04 AM |
Hi,
I am father of a 2 year 4 month old son. My son is also suffering from hypospadias. He was operated for the 1st stage in March-06. He is due for the 2nd stage of the surger.We are new in Phoenix (we moved from INDIA to Phoenix 3 months back only). Can you please refer a good doctor (if you live in Phoenix) ? I am not sure about your location. I would appreciate your comments that can help me when my son undergoes for the 2nd stage. Many thanks in Advance. Thanks and Regards, Durgesh ↑ |
| Name: mom_two_lil_boys | Date: Jan 11th, 2007 2:52 AM |
durgesh73,
I am not sure what the 2 stange hypo repair process is. My son only had one surgery. His doctor said everything looks good, but if he gets a fistula (2nd hole) then call him, because they would have to do another surgery. Is that what you are talking about? I wish I could help you with a doctor, but I live in South Carolina. Sorry I am not much help. My thoughts and prayers are with you and your son. ↑ |
|
|
