Posted by windsong on June 04, 2004 at 15:00:40:

Hi,
This is my first post to this forum although I have been reading here for a while...........I am posting to ask some advise.

My son , aged 8, uses Cpap for OSA since Oct last year. He is on the maximum pressures for a child and finds it very difficult to breathe out against the force of air coming in. He was admitted for a week a few weeks back to put him on Bi-Pap but then they changed their minds between Bi-Pap / Cpap several times each day we were there. End result was Cpap with a new mask that got rid of the leaks so the pressure was enough to keep his c02 levels acceptable,but the trouble breathing out was still there and even worse since there are now no leaks.

Then over the bank holiday weekend he began to snore with the Cpap on , we upped the pressure 2cm above the maximum like we had been told and of course he couldn't tolerate it.So another admission was arranged which they took all day to organise leaving us having to take him on a 2 1/2 hour journey late at night. On this admission he had a sleep study showing his co2 was 6-6.5 which they say is acceptable although normal is 5 and under I believe. Does anyone know about this ? The drs say that 7 and above is not acceptable.
So having established that his pressure is at the right level for keeping his co2 within acceptable limits we then moved onto the problem of him finding it hard to breathe out against th eair coming in. Now they say this isn't good enough and can't go on. Instead of putting him on Bi-Pap they wanted to lower his pressure to make it easier to breathe out. They put him on the same pressure that he was on before and was changed in Feb to the one he is on now as it wasn't keeping his c02 below 7 and was giving him headaches. I said to them why are you putting his pressure lower when you already know from previous studies it isnt good enough?
They said they would do another sleep study with the lower pressure and if c02 went above 7 then obviously that pressure wasn't good enough and any higher pressure is too difficult to breathe against so they would have to go to Bi-pap. They messed up the study and it stopped at 2 am. The c02 was steadily rising on the trace and had gone above 7. Who knows where it would have gone up to as the night progressed.
On seeing this they moved the goalposts and said c02 above 7 is acceptable so stay on the lower pressure and no need to go to Bi-pap.

We argued against this saying to them that a co2 above 7 is not good enough and we know this pressure isn't enough that is why it was upped before. We asked why they will not go to Bi-pap is it finances , they said no nothing to do with that it is because it is complex. We asked complex for who, us at home or you. He said that it was complex for them to get it set up to the right pressures, taking a week or two to get it set up. We pointed out it would be more economical for them to take a week to set it up than to keep having us admitted because of problems. This is the 7th sleep study and is the 5th admission this year and we could be up there many more times but only go when we really really have to.

So , we are home with Cpap at a pressure that isn't good enough to keep his c02 within acceptable range and he is snoring even worse continously all night long. Loud enough to hear clearly above the sound of the air vent which is quite noisy in itself.
They say that we need to call them if he has headaches with this lower pressure and they will re-think the Bi-pap, I think that no matter what they will just move the goalposts to whatever suits them so they don't have to go to Bi-pap. If his c02 was 8 they would say that 8 is ok, if it was 9 then suddenly that would be ok too and so on.

It seems that they would rather he had inadequate ventilation than go to the bother and hassle of setting him up on Bi-Pap. The Dr told me that Cpap is like a Mini, and Bi-Pap like a Ferrari...........more complex and more things to go wrong.

To make things worse, whilst in the hospital another complication developed. He coughed up a fairly large amount of bright red fresh blood. He has done this on a large scale on two previous occasions over the past 4 years, the last time being nearly 2 years ago. The first time he was taken to theatre and had a gastroscope done (camera in oesphagus) that didn't reveal where bleeding was coming from. The last time he coughed up bowlfuls more than a dozen times on one day and it carried on for 4-5 days then it suddenly stopped as was the case the previous time .His surgeon happened to be away and by the time he got back it had stopped and they decided to leave it and not disturb anything. Over the following year and half he was referred here there and everywhere to find out the cause of this bleeding and no-one had a clue. It is not coming from his stomach since he had a Nissens Fundoplication ( a surgery which wraps the stomach 360 degrees round the oesphagus creating a new valve and meaning that nothing can come up from the stomach ) This is comfimed by the fact that none of his feed (he is fed by a gastrostomy - a tube in his stomach) was in the blood and that drawing out stomach contents does not reveal bright red blood.

In the course of these referrals it was discovered he had large tonsils and high blood pressure. The high BP was a concern as it is not normal for a child to have high BP and it means that something is wrong. More referrals followed with again no-one knowing why his BP was high. Everyone we were referred to referred us back to his original surgeon who is a really lovely man who goes well beyond the call of duty for our little boy, but this poor man did not know why he had high BP and where on earth the blood was coming from.
We were referred to a ENT surgeon about his large tonsils in the course of all this who wanted to send him for sleep study which I though a waste of time since although he did have apnea as a baby he stopped at about age 2 (or so i thought) So I was shocked when the results showed OSA with high c02 retention (up to 10). The high BP and headaches was explained as being caused by high c02 but we still didn't have an explanation for the blood. Now of course no-one would contemplate giving him an anesthetic to put a camera down into his lungs.

The ENT surgeon told us that there was no way he was going to consider taking his tonsils out as because of combined factors he is at very high risk of having massive hemorrage post surgery and it's too risky. In fact he would rather do a tracheotomy if it came to it. So Cpap became our only option and for some reason he needs to be on maximum pressure.
Anyway, by the time he was adequately ventilated for them to consider it safe to anethetise him to have a look, over a year and half had gone past so I said lets not do it because its so unlikely you will see anything after such a long period has elapsed and we came to the plan that if it happened again we would get him into theatre for gastroscope and bronchoscope whilst he was coughing up the blood so the site could be found. This is at one hospital (Will call it C). He happened to be in the other one which is a heart and lung hospital (will call it B) when it happened this time.

We told them the plans his surgeon at C had so they called him and came to the arrangment that his surgeon would come to hospital B and do the gastroscope whilst they did the bronchoscope but they couldnt do this for 4 weeks. By this time it would have stopped and perhaps nothing would be seen.

The hospital sent us home (3 hour journey by train in the evening) knowing that these coughing up blood episodes last a few days and get worse. He was home one hour before he coughed up a huge quantity of blood, about 3 times more than what he did in hospital which they said was a significant amount although not worrying. So we called them at hosp B and they called the professor (his respirtary consultant) at home who said that we needed to call Peter's surgeon at hosp C to see if they could do a bronchoscopy and gastroscopy today.........eventually at past 11pm we spoke to the surgical reg on call who said that he would speak to the man himself in the morning and let us know what he wanted to do. He said that they dont want to do it at hosp C because they dont have the facilities for the complex ventilation with the anesthetic but the hosp B who do , dont have the facility for gastroscope.

Anyway this am his surgeon called and said that since he feel that the blood is coming from the lungs gastroscope isnt essential, but he needs a bronchoscope right now and that would have to be at hosp B as he was at another hospital himself that day so couldnt do it.

So we called hosp B again who said that yes since he brought up such a large amount he needs to go to theatre today and they booked him in to be in theatre at 1 pm to squeeze him in before the list which gave us just 1 hr 20 mins to get there in time to be prep for theatre. Tall order since we live at least 2 hours away if not more like 3. Then they called back and said that although they could get him to theatre no problem they have not got a bed !!!!!!!!

His local pead team who are on 24 hr call out for him called me and I told them all that has gone on and how upset I am that we have lived in fear of where this blood is coming from for 4 years and now might not get to find out again. It may of course be something minor and probably is but i cant get out of my mind the possibility that it is something more sinister. I am sick of them saying they dont know. Dont care more like. She called this Dr at hosp B and asked what was going on. She asked why they havent put him on the Bi-Pap and the dr told her his c02 was at 6- 6.5 which is not true. So I am going to ask him for a copy of the trace to show the local team which clearly shows it going above 7. She said that we need to know where this blood is coming from....so they have got a bed and theatre space for Monday for him.

Hopefully Monday wont be too late. the last lot of blood was last night so if he doesnt have any more it will be a gap of 4 days.
It's driving me mad this not knowing especially as no doctor we have come across seems to have any idea at all what the problem could be. I wonder if the strain on his lungs re breathing before Cpap was initiated caused the other 2 episodes and perhaps this one his lungs being strained because of having to breathe against force of air. I wonder this because in addition to the coughing up blood, his mask the past few days has had blood splatters in it around the mouth area. All in all this is becoming very , very frustrating and I just cannot see why all the fuss about Bi-pap. Surely when he is suspected of bleeding internally in his lungs it would be far gentler on him.

Both hospital B and C are good hospitals with great surgeons / doctors. Our local is so bad its dangerous. We have never had trouble with hosp C and until now hosp B has been great. Right now, hosp B is seriously winding me and especially my husband, up. It is difficult to know what to do for the best......to push them harder for the Bi-pap or to leave him at this lower pressure on Cpap which is not enough. We don't want to push too hard and destroy any workable relationship we have with them. I know that at the end of it they are the experts and it is an internationally renouned respiritary hospital...and I respect that, and respect the fact they know far more than we do...but I think we have reached stalemate and they are not understanding the problem.

We just want the best for our little boy. We are I guess already very unpopular with his team at hosp B due to the disagreements the past few days so when we see them on Monday for this bronchoscope (camera in lungs) we need to find a way to move forward in a constructive way.

Any thoughts or ideas are much appreciated

Windsong.

Follow Ups:

• Re: bi-pap v c-pap & coughing up blood D.H. 17:44 6/04/04 (0)

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