Support Chat Thread

[Eccleston2011]

Oh sweetie, just reading that made my heartache for you. You will definitely keep you in my thoughts and prayers.

Post as much as you want here, Ill listen! But I'm afraid any advice I could give would be terribly difficult and not very helpful. But getting your feelings out can be really freeing and none of us will judge, I would bet we all have had days were we didn't want to get out of bed and face the world.

I recently posted a plea for prayers because we found out that my daughter isn't growing and it is probably a growth hormone deficient that will require daily shots and I sat and cried because I couldn't imagine putting her through that and daily therapy but I got reminded that our kids are true super heroes and will face anything with a smile on their face.

 

[Peanut78]

dearest Blue, I'm so sorry to read your news, you must be feeling quite overwhelmed right now - sending you massive hugs and thoughts

Are you seeing the specialists at Sunninghill? They are top notch, the Walter Sisulu centre has such an amazing global reputation. We saw one of the cardiologists there (trying to remember his name - will pm you). As you know when T was first found to have his issues at one point they weren't sure whether it was a progressive disease (i.e. de-mylinating condition), for 10 days we held our breaths while we waited for test results not knowing what we were potentially dealing with, but knowing there was a possibility it could have a very bad outcome. It is beyond overwhelming Stay close to your DH and talk to each other as much as possible. I pray your little boy has the best possible outcome

 

[Janers]

Oh Blue, I am very sorry to hear that, and I really hope you get the best news possible. I wish I had some words of advice, but all i can say is post as much as you like, and you'll have support from lots of other ladies including me.

I'll be thinking of you, your family, and your little boy.

 

[sun]

I'm so so sorry to hear what you're going through with your little boy
I agree with all the other ladies though - post here as much as you need to! We're here to support you as much as we can Thinking of you and your family - hugs xx

 

[BlueHadeda]

Thank you everyone. I knew posting here would make me feel better, because the people on here understand. Like Eccleston said, even when there's hope for treatment, the pain that that might cause our children can be overwhelming. It scares me to think what medications, treatments, prosedures, etc. might lie ahead for my son. But it helps to know we're not alone with these extra worries about our children.

 

[BlueHadeda]

Hi everyone! Just an update. We saw the ENT today, and my son most definitely has obstructive sleep apnea. x-rays shows very enlarged adenoids, and he has already facial structure defects due to not getting airpressure in the airway between nose and throat. It stunted the growth of his nose/upperjaw area (so he now has a severe underbite). It's fortunately easily fixed (hopefully) by scraping the adenoids to open the airway up. He's going in for the procedure in 2 week's time. It'll be quick and it's a day procedure. Then we'll need to wait 2 months before taking him back to the cardiologist, to see if his enlarged heart has shrank and if the pulmonary hypertension is better. So there's good hope!!

 

[Janers]

So glad to hear that! I am happy to hear its a day procedure as well!

Glad you updated!

 

[Tiff]

Excellent update hun, be sure to let us know how it goes!

 

[Peanut78]

Amazing news Blue!

Good luck with the op, let us know how you get on

 

[smileyfaces]

Great news Blue. Big hugs xx

 

[Eccleston2011]

Yay! Im so happy for you!

 

[BlueHadeda]

Hi everyone! Just another update on my son. He had his adenoids removed 2 days ago. It was almost completely blocking his upper airways. ENT believes he might be allergic to something and took some bloods.

What should've been a very quick and easy and almost risk-free operation turned a bit scary when the anaesthetyst told us that it's a big deal for a child with his heart-lung condition. Fortunately, everything went well and even though he had to stay a while to be monitored, his heartrate and oxygen levels recovered well. We had to let him sleep on the breathing monitor (his baby sister's!) because they were scared his body might go into shock. But he's been fine and slowly improving and recovering at home. I don't see any improvements on his other signs of the disease, but it's very early days. We have to see the ENT in a month's time, and the cardiologist in 2 month's time.

 

[sun]

That's excellent that he's doing well and I hope he continues to improve. Hugs to you both!! x

 

[Tiff]

Goodness, that must have been so scary and stressful. I'm glad that everything is okay for the here and now!

 

[AP]

I didnt even know this was here
Blue I've just caught up and its so good to hear there has been some positivity!

 

[Janers]

That does sound scary, but i'm so glad to hear it went well! I'm glad your LO is at home recovering!

I hope he continues to get better!!

 

[BlueHadeda]

OMW, I had to search for this thread!! No one else needs some support or just a vent session?

I've been extremely scarce on BnB, for various reasons. Missed this site!! Anyhoo, I thought I'll come and update a bit on here.

My son's pulmonary hypertension has resolved completely!!! Just a few tiny left-over signs that will dissapear with time. Even his enlarged heart is back to normal size! We're so very relieved and happy about this. We have really dodged such an awful bullet. Thank you for all the prayers and well wishes. I do believe in good karma and silent prayers from all over the world, so I'm really grateful to everyone.

Unfortunately, his symptoms of tiredness and even some heart palpitations hasn't resolved. So it's assumed that it was never caused by the PH. Thus, we're on the search for more answers. So far, he has been diagnosed with a thin heart wall, but it's still not the cause. There's also a little bit of doubt to what his one pulmonary/heart artery is up to. X-rays has been taken, and this coming week we have to send 3x of FMU for unialysis to the lab. Also, some more bloods. And a sleep study in a few weeks time. We just have to be patient and believe that whatever we'll find, won't be a big deal and easily fixable. My son is doing well despite all of it. He's happy, not as tired as he was shortly after the adenoidectomy, and definitely not "on death's doorstep", so I'm sure he'll be fine. We just want to sort this out before he starts (our country's version of) Kindergarten in 4 months' time. We have gathered a lovely group of specialists around us that's helping, so I'm sure it's just a matter of time until we know if/what is up with this strange tiredness.

 

[sun]

Wow BlueHadeda - that's such fantastic news to wake up to this morning! hugs:
To have something that could have been so serious resolve itself is simply amazing. I really hope you find out the reason for his fatigue and that he feels 100% soon. So glad to hear this great news!! xo

 

[Janers]

Great news! You must be breathing a huge sigh of relief!

I hope your LO's fatigue is sorted out quickly!

Thanks for updating us!

 

[Tiff]

Wonderful news BH! What a great thing to read!

We've been hit or miss here. Claire started school this week. Upside: She's got an EA that she only has to share with one other kiddo... so that's good. It was a stressful summer waiting to see if she would get one or not.

She seems to be adjusting well to school, her teacher and EA seem nice.

Just now waiting for ABA therapy to start. It just seems like its a never-ending waiting game these days!