Hi there, my name is Carol and I need support so I can help my little boy Joel who is ten.
Joel was born with Downs Syndrome, and I kind of thought this is ok I can deal with this.... well I thought it so it has to be right, wrong. I greived for a long time Joel was checked over aftr his birth and then checked for other condition Joel had hole in two chambers of his heart and a floppy valve. The heart consultant repaired this with open heart surgery, Joel then developed a chylothorax not sure whether this is the right spelling, they drained the fluid from around his left lung.
After 11 long days we went home after being trained to feed Joel through a naso gastric feed tube, but hey we were home cool. We carried on quite normally and Joel had repeated chest infections, then one day when he was seven he deveoped pneaumonia and we were in hospital for two weeks Joels saturation levels were low. We were discharged home with a concentrater and long term anti biotics. Hooray. The question I would like to know is if Joel continues with low oxygen levels how will this affect his body he now has bi-lateral Bronchiostasis. He has a viral infection at the moment. Many Thanks.
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Carolvhatton
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What a beautiful child, and what a poor hand he was dealt. I am an oxygen user but do not have the same condition so I will leave it to others to advise you. Good luck to you both.
Awww bless you carol hope you get some answers xx always here if you need a chat hun xx Joel is such a gorgeous boy always has a smile on his little face xxx
What a lovely smile, he looks adorable I also have bilateral bronchiectasis, with a history of chest infections & pneumonia (I'm 64 now, though). However I don't need O2 so I know nothing about that. I think we have some members with bronchiectasis who are on oxygen, so hopefully someone will be along soon. Why are Joel's sats low if he's on it?
He is beautiful what a lovely smile. I love the name its my nephews. Poor love what complex health issues, I use oxygen but for Emphysema, I'm not an expert but you could try calling the helpline, they will be able to answer your questions. But we can support you someone is normally online.
Hi there, what a gorgeous boy you have! I am very sorry to hear of his on-going medical issues. Bronchiectasis needs aggressive management and you need to advocate for him. Does he get physio for the bronoch specifically? Also, if he has infections you need to get the mucous out the lungs by using things like bubble PEP etc.
You need to get into contact with a good respiratory nurse or dr to get adequate help. Putting him on long-term antibiotics is a good start but there is more that can be done to help him. For example, elimination of certain mucous producing foods may be another thing to look at. Best wishes to you both and a big hug to Joelxxx
You could ring the nurses on on the blf response line their telephone number is on the front page of this site they will be able to help you. Their tel. Lines are open from 9 to 5.
I have bronchiectasis and have oxygen when being active or walking about. But as your beautiful boy is young I'm not sure that my daily routine would be suitable.
Keep in touch with us it's good to be able to have somewhere to come to for a chat or a rant.
Hello Carol. Joel is an amazing little boy. He has gone through so much as have you. Three cheers for you mummy! I do not have the same condition as Joel. But I am sure someone who does will be along shortly. Sending you both a big hug.
I'm no expert but do use oxygen. I would think that if Joel is using oxygen, his oxygen levels should be raised. If they're aren't, then he might need a higher concentration of oxygen pumped out - known as litres per minute. The aim is to "saturate" to normal levels, and you should get support and help from the oxygen nurse/physio for your area
I do hope all goes well for you and Joel...he looks a really cheeky little boy
What a marvellous smile - that picture has made my day, you can't help but smile back! You are having a very difficult time and I am afraid I cannot offer any advise but wonder if the helpline might be able to ........03000 030 555. Take care and lots of love to you and your beautiful son xxx
Hello Carol, that is indeed the best smile! - but what a very hard time you're both having. I do hope that following up some of the suggestions helps. I can't add anything except have you been told about measuring Joel's O2 levels with an Oximeter? It's very simple to use and would reassure you about what his levels are. (You can buy them on Amazon).
I can't add anything useful to the replies you have already had, Carol, but just wanted to thank Joel and his glorious smile for improving my morning no end.
Hello Carol, Joel has made me smile with his cheerful grin! I had a look to see what was considered a normal oxygen saturation level for a child and found ' mums net' I'll try posting the link as I thought it was a good site, though I am still uncertain as to what is normal for a child....anyways it's nice to meet you and Joel and I hope you can find some answers, huff xxx
Welcome to you and Joel Carol (he is gorgeous); such a shame he's had so much to contend with, as well as yourself. I'm afraid I can't help with your question but I can see you've had some good input from others on the site. Big hugs and all best wishes to you both x
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I also have bilateral bronchiectasis, with a history of chest infections & pneumonia (I'm 64 now, though). However I don't need O2 so I know nothing about that. I think we have some members with bronchiectasis who are on oxygen, so hopefully someone will be along soon. Why are Joel's sats low if he's on it?
Tiredness that is draining
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