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.

[SallyBear]

That's what we are here for ((hugs)) x

[hazeyjane]

Saw chest dr - ds has to have another 3 weeks of augmentin, his left lung is still very noisy and he has a temperature again, so likely he has a secondary infection. The dr wants to get this infection sorted, then have another listen and do an xray, to see whether he still has a noisy lung (I think we know it will be, as his regular paed always hears crackles in this lung). If this is the case he will go up to JR to see Jeremy Hull, and have a ct scan.

He said likely causes are either aspiration or scarring, I asked about bronchiectasis, but he said it would be unusual but not impossible.

He said that wrt to the sleep study, if the community nurses think he should have oxygen based on last nights results, that he should because of the infectionn. But he thinks that we should review in 3 weeks, and probably have a full study done at JR, because he thinks it is likely that ds has obstructive sleep apnea, in which case (as you say, Sallybear) he will need cpap.

Thankyou for listening to me waffling on about ds's poor lungs, it really helps.

[steelev48]

Whoops! Just seen your update.

[steelev48]

Good luck with the overnight study

[SallyBear]

Good news about the appointment. They're taking it all very seriously, especially with the added heart complaint. Mention the change of colour as well. The machine must have been alarming a lot if they were dropping below 80. You must be knackered. X

[hazeyjane]

He has had blood gases done before, about a year ago, is it something that can change?

Just had a call to say we have an emergency appointment this afternoon with a dr from GWH who is a chest specialist.

I will as him about cpap, and see what he says. The nurse isn't picking up the monitor until tomorrow, so we won't have the full report back until next week, but I slept in with ds and watched the bloody numbers flashing away half the night.

Ds is just so tired all the time, I feel as though something has happened recently, because he goes from very pale to very flushed (but freezing), and then takes ages to lose the colour, IYSWIM, it is as though his circulation is completely out of whack. He is not floppy or seeming really ill, but he is obviously strugging and his chest sounds rattly.

I'm so worried about him.

[SallyBear]

Not great. The thing that I suppose I'm trying to understand is why suggest oxygen over CPAP. The snoring would suggest Obstructive Sleep Apnoea, and the CPAP would help keep the airway open. They could also suggest a nasopharyngeal tube to keep his airway open, but tbh they're very unpleasant. No wonder DS has been so out of sorts and cranky. When he was in hospital did they do any blood gas test measurements? This would show if he had an abnormal oxygen and co2 balance in his blood stream. ((Hugs))

[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.

[TheNinjaGooseIsOnAMission]

good luck

[Bluebirdonmyshoulder]

Good luck hazey and minihazey, hope it goes well.

Sleep tight minihazey.

[hazeyjane]

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

[moosemama]

Good luck hazey and minihazey. Honking for you.

[SallyBear]

Good luck and a honk for luck!

[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!

[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!

[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.

[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]

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]

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.

[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.

[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]

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

[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!

[TaggieCampbellBlack]

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

[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