[SuzBerg]

Welcome to the Medical Conditions Forum!

Being the parent of a child who is chronically ill, medically fragile, or other such syndroms presents a unique set of challenges and experiences. Doctors visits, Therapy, Hospital Stays, Medications and the endless worry can add a unique (and at times frustrating) perspective to parenting.

If your kiddo has ANY sort of medical condition including (but not limited to) Heart Defects, Prematurity, Neuro-Complications, Genetic Disorders, Cystic Fibrosis, Cerebral Palsey, Failure to Thrive, Cancer, Shaken Baby Syndrome, Pre-Natal Exposure, Feeding Tubes, etc. and you would like some support, have questions or just want to hang out with those that you may have something in common with this is the place for you!


Now that you are here, please introduce yourself. Tell us about your kiddo, yourself, your challenges, your victories, whatever it is you want to discuss about being the parent of a kiddo with a medical condition. Also please feel free to start your own threads for support, questions etc.

I am Suz! We have a wonderful 6 year old little girl (placed with us at 2 1/2), who was born with a complex congenital heart defect (Hypoplastic Left Heart Syndrome), she also has had reactive airway disease, failure to thrive, reflux, wears braces on her feet, etc. She has had 5 open heart surgeries (the last one in October which was very successful). Now that we have her heart issues under control (for the moment), she will be having surgery on her foot next month to straighten a curvature. We are also going this week to a neuro-surgeon for a consultation to make sure she has no underlying issues with her spine causing her feet to curve. We see lots of doctors and have lots of medicines etc.

I would love to have this forum become more active and supportive. That is my goal. Hope you will find this a helpful and supportive place to post.

Hugs - Suz

[tweetybirdus]

Hi, I have a 5 month little girl, Sabrina, who has Tetrology of Fallot which entails Vetricular Septal Defect (VSD) and mild Pulmonary Stenosis. She is due to have her first and hopefully last open heart surgery (OHS) in the next few months to repair the VSD.

Suz, how old was you little one at her first OHS. Any advice, suggestions, experience you would like to share? I'm getting a little anxious about it.

Thanks,

Kat

[SuzBerg]

Kat - Welcome, glad you posted here. Our daughter had her first OH at about a day old another at about a month old and then another at 11 months old. Her fourth surgyer, first with us was at 3.5 (she had been with us for about a year). Her fifth was last October just after she turned 6.

You daughter is so young that I don't know how much you can do to prepare her - but you can prepare yourself. Get lots of sleep before hand (I know not easy), have a support system in place (friends, relatives, etc). I would definatley take a tour of the hospital before hand - that way you will learn things as each hospital we have been to is different. For Em's first surgery (with us) the local children's hospital let's parents room in with kiddos in ICU, last fall we took her to a very specialized (top 5 in the country for cardiac kids) hospital about 3 hours away - there parents could not room in with the kiddo as there was NO bed (I'm glad I knew this in advance).

I would be glad to answer any questions you have - please pm me, start a new thread or just post here. I figure all this experience I've had should help someone else out!

[devildogwife]

Hi Kat. I think I can answers some questions too. My son the same CHD as Suz's daughter, HLHS. He also has a VSD, was born without a critical opening in his heart (resulting in the emergency open heart surgery when he was 10 hrs old), and he has a MSPI plus corn intolerance.

I'm glad your daughter may only have to have one surgery. Cameron was 10 hours old at his first OHS, 10 days old at the second, and 14 days old when they closed his heart. The chest cavity was left open for 4 days post Norwood. Yes, I actually saw his tiny little heart beating. His next surgery will be April most likely and he is getting his heart cathed in just a few weeks. It's normal (of course!) to be nervous. I was terrified. I'm getting very nervous again for his 4th surgery.

I agree with Suz. Get plenty of sleep. Have they said approximately how long she'll need to be in the hospital? Cameron was in for 32 days. If she is going to need to be in that long, can you arrange for someone to bring you meals? They really limited visitors while my son was in the PICU and the NICU, so you may want to find out their policies on that. We liked having such a restrictive policy as things are SO risky with heart babies. Will you need to monitor anything when she comes home? Any special equipment? Use your resources there. The chaplain would come visit us and pray with us during Cameron's surgery. The PICU social worker follows us through every hospital stay/visit and is just so helpful with everything. Do you know any other heart mom's in your area? I called one last night in a panic when my son's oxygen dropped really low. It's great to have the support.

Please post or PM me also. Suz was (and is!) a great support to me 3 and 1/2 months ago when we were in the hospital. I have been through it so recently and I really feel for you.

Originally Posted by tweetybirdus

Hi, I have a 5 month little girl, Sabrina, who has Tetrology of Fallot which entails Vetricular Septal Defect (VSD) and mild Pulmonary Stenosis. She is due to have her first and hopefully last open heart surgery (OHS) in the next few months to repair the VSD.

Suz, how old was you little one at her first OHS. Any advice, suggestions, experience you would like to share? I'm getting a little anxious about it.

Thanks,

Kat

[nikkianni]

Hi all. I have an 11 month old daughter who was diagnosed with mytopic synostosis, the early closure of the skull suture in the forehead, a month or so ago. We'll be heading back to the specialists in a month to determine when her surgery will be. In the meantime she'll have to undergo several tests including a genetic test, developmental assessment and a visit to the opthalmologist. They're already done a CT scan to check for pressure on her brain. Thnakfully there is none and her brain is growing normally.

[athikers]

Hey everyone. I'm a foster mommy to a little guy named "Teeter". He is almost 15 months old. He was a 25 week premie and was hospitalized for six months after his early arrival in the world. While in the NICU several surgeries - two open heart surgeries (his heart issues are now resolved, but he's hypertensive), nissen fundo surgery due to severe reflux and aspiration, a g-tube placed due to poor sucking, and two hernia surgeries. He also has severe bronchopulmonary dysplasia. So, fast forward to today... he is on many meds, his nissen is undone but we are managing his reflux with careful attention to food volume and fluid intake (and meds), he still needs his g-tube for supplemental calories and he is still oxygen dependent at night. He is a fighter and we believe as he gets bigger he will be able to overcome his feeding issues and hopefully his oxygen needs. But, if not, he's still our precious little boy.

[tweetybirdus]

Thanks ladies, we haven't had our surgical consult yet. They called today while we were at work so I'll call tomorrow to set up the appt. I guess we'll know a lot more then.

Questions to ask the Pediatric Card and Surgeon?