ds and his lungs - just seen paed - feeling a bit nervous.

[hazeyjane]

Just been to see ds's paed after his hospital stay last week (pneumonia). He has urgently referred us to a chest specialist at John Radcliffe, and wants another colleague to see ds next week. He listened to his chest and said it still sounds very harsh, and when he heard him cough, he said, 'hmm, I don't like the sound of that...' He has prescribed a daily preventative antibiotic, said to continue with the chest physio, and wants him to have ventolin 3 x a day.

Looking through his previous chest xrays, there is a definite patch in the middle of the right lung, and in the last 2 there is also a patch at the bottom of the left.

Ds's paed is normally the calmest, most reassuring man I know, but not today. he wants to me to call him before the end of the week, to make sure things are moving along, and see ds again in 2 weeks.

I have no idea what could be going on with ds's lungs, but I am feeling a bit sick in the bottom of my stomach.

[moosemama]

Hazey, I don't know what to say. Obviously nothing is going to stop you worrying, but I am here to hold your hand. x

[TheNinjaGooseIsOnAMission]

hugs Hazey, he sounds like he's doing a good job of referring him on. Honk!

[SallyBear]

Hi Hazey. It sounds like its something called bronchiectasis. www.nhs.uk/conditions/Bronchiectasis/Pages/Introduction.aspx DD has it, and its one of those horrible conditions where the mucus gets stuck because the lungs can't move it out properly. We are on prophylactic antibiotic for it too, and lots of Physio.

Funnily enough I was chatting to one of the Respiratory Fellows at GOSH this morning about it, as DD has had about 5 chest infections last year. Not a huge amount, but the length of recovery time is getting longer. He will call me back this afternoon after he has spoken to the consultant about the next steps to help her.

I think what your paed has prescribed is good. How long per side are you spending on Physio. You may want to lengthen the time. Always important to do both sides as well. I would also ask for a Physio at the CDC to see him a couple of times a week at least if you can get that arranged.

Here for you if you need some more advice or support x

[Tootsandblanket]

Oh that sounds tough. We do a lot of chest physio on my DD to help her cope and clear out all the muck. My DD has bipap at night to prevent chest infections as she has weak muscles, but I'm not us of this would help mini hazey as I am not aware of all the details. She is also on daily preventative antibiotics which I think have helped enormously. We alos use ventolin when she struggles to great effect as well. Good luck with all the referrals. I will be thinking of you all.x

[hazeyjane]

Thankyou all, handholding is just what I need. Dh couldn't come to the appointment, so it was just me and ds (oh and an interested dr and the small army of medical students that seem to follow us around appointments these days!) At one point I turned round to get something out of my bag, and saw the 'extra' dr talking to the students about ds's face, I guess discussing his mildly dysmorphic features, and poor ds was sat there on my lap letting them all listen to his chest, and I just wanted to bundle him up, and get him out of there.

I hadn't really expected the appointment to be quite so 'urgent' and thought it was mainly to discuss the sleep study done in hospital, which barely got talked about, apart from a, ' it really wasn't good, we have to do another one soon.'

I had wondered about bronchiecstatis, a friend of mine had it very badly, and I asked on a thread about it before. Sallybear, is there a way they definitively diagnose it, like through a ct scan, or is it something they diagnose through chest x-rays? Clinical history?

Anyway, I found myself staring at a pile of washing that needed to be done, so went for a walk instead, and have somehow found myself in Caffe Nero, with a sleeping ds and a large cappuccino .

[SallyBear]

GOSH dx it with a CT scan with contrast. It all came about as her lung collapsed during surgery. We didn't know about the Bronchectasis for another couple of years. The Respiratory team at GOSH have been marvellous, easy to get hold of and genuinely helpful and concerned. The JR team has changed a lot since we were there, a lot of the old guard have moved on or retired so I couldn't be of any help other than to suggest the things they've done for DD at GOSH. They may have to consider CPAP at night for your munchkin to help keep his airway open. not a lot of kids tolerate it to start with but it does make a massive difference. Please don't forget that if you're not happy with the JR's dx or treatment plan that you can get a second opinion.

Enjoy your coffee Hazey

[TaggieCampbellBlack]

I know nothing of lungs but can offer a hand to squeeze. And a hug for little DS.

[hazeyjane]

Thankyou Toots, can I ask you and SallyBear how much chest physio you do?

All the physio in hospital showed us was - ds lying on his side, towel over, cupped hand tapping firmly his back in the lung area, and a kind of upwards motion towards. He told us to do it for 7 minutes each side morning and night.

Ds has low muscle tone, so he has great trouble coughing anything up.

I think ds will probably need oxygen at night, but have no idea how we will do it, because we couldn't get him to wear a nasal cannula in hospital, and he ripped the oxygen mask off. We managed in the end by having him sleep upright leaning into me, and draping the mask over my shoulder, with the oxygen cranked up to the max! I can't see this being a long term solution though!

[Tootsandblanket]

Yes I second that, enjoy the coffee. Have a muffin too!

[SallyBear]

15 minutes when she's healthy, 20 minutes when she's unwell. We've never needed oxygen at home, just post anaesthetic recovery from surgery. It is all about de sensitising the mask for him. It's not great trying these things when they're so ill, better to introduce it when they're healthier so its not so scary. Also hospital can be a scary place when you're small and don't understand why people keep prodding you. It might be a good idea to ask if you can see a clinical psychologist for ideas to help little Hazey learn to accept wearing a mask.

[Tootsandblanket]

We have become a bit lax and dont time the chest physio any more- it's roughly 5 mins morning and night. But if I think she sounds crappy in the day I will do some too. The actions you describe sound the same as we do, we call it " percussioning". DD has no swallow so we need to suction all the secretions, it's strangely satisfying after the physio to see the gunk come up!
Bipap was brilliant for DD - at first she tolerated the mask but we are currently at battle stations every night trying to keep it on her.
We are under the respiratory team at the Evelina children's hospital. There was talk of using a cough assist device to aid her but currently they feel she does not need it.
Dd has dysmorphic features too, I find it hard to see anymore - I just see her, but I feel the same protective streak when I hear people refer to them.
Anyway sending positive thoughts to you and the mini one.

[bigbluebus]

Hazey hope you get some answers (and solutions) soon.
I know that feeling about the Dr and Medical Students very well. The 1st time DD was admitted to hospital by our GP with a Chest Infection, the Consultant came in with a group of students and spent 5 minutes talking about the Coloboma in DDs eyes. They all but ignored her chest and discharged us. We went back to GP the next day who was furious that we had been sent home and re-adimitted us. If I had known then what I know now, I would have spoken up - but it was our 1st trip to hospital and I was terrified.
Have been interviewed many times since by medical students - I think the consultants send the students to me now to scare them!!!! I have definitely grown a backbone over the last 18 yrs.

[SallyBear]

If I don't want the students there I ask them to leave. The Consultant should always ask your permission first for them to be present. Different when its a multi disciplinary team approach as doctors these days, all seem to look so young!
DD and DS have got colobomas too BigBlueBus!

[bigbluebus]

sally I don't mind the students being there as long as the Doctor prioritises what we are there for first, rather than zooming in on some of DDs more unusual features!!!
Probably wouldn't be interested in Coloboma these days - everyone knows what they are since Madeline McCann went missing!!!!!
know what you mean about doctors getting younger too, sometimes wonder if they are old enough to have left school

[SallyBear]

My two have coloboma of the eyelid. It looks like a little notch along the bottom lid. Doesn't affect the iris or the retina etc. all very syndromic. A friend had a baby under a month ago, and I noticed that he has pre-auricular pits in front of his ears and that he had mild positional talipes that hadn't been picked up by the paed SHO when she was allowed home. I didn't say anything as this was a much longed for baby, I just hope that the HV and the GP are a bit more on the ball.

[hazeyjane]

I don't actually mind about the medical students, I know how important it is, and if I think ds is upset, I ask them to stop (medical student who couldn't hear ds's heart murmur because of the screaming, I am thinking of you!!) I think it was one of those moments when you just want everyone to stop prodding and poking and treating your gorgeous child as a thing of medical interest.

I remember pointing out ds's ear pit to people, before we knew there were any problems, everyone thought I was mad!

[hazeyjane]

just had sats monitor delivered for at home sleep study. community nurse said that they would make a decision about home oxygen based on this reading, and would want to do a more indepth study depending on reading.

wish us luck tonight!

[SallyBear]

Good luck and a honk for luck!

[moosemama]

Good luck hazey and minihazey. Honking for you.

[hazeyjane]

thankyou, just need ds to actually go to sleep now!

[Bluebirdonmyshoulder]

Good luck hazey and minihazey, hope it goes well.

Sleep tight minihazey.

[TheNinjaGooseIsOnAMission]

good luck

[hazeyjane]

well that was an interesting night, ds snored like a train, the readings were 94 at highest, 74 at lowest.

And this morning he has woken up with his chest sounding dreadful, back to the dr today.

he finished a 10 day course of augmentin yesterday, it shouldn't sound this bad.