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]

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]

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]

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

[steelev48]

Good luck with the overnight study

[steelev48]

Whoops! Just seen your update.

[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.

[SallyBear]

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