Fluid Balance/dehydration/hypersalivation...drowning!

At our appointment last weel we had a sleep study that showed significant central and obstructive apnoea's.

We also had a blood test taken as Eve has gained masses of weight suddenly and we wondered i it could be fluid retention as she rarely has a wet nappy and looks really puffy. In hospital before Christmas they measured what went in and wheighed her nappies and she was in a very positive balance every day but no one seemed concerned.

Anwyay the Metabolic consultant rang us back Tuesday night and said the blood test showed she was significantly dehydrated. He wanted us to change her formula to one with less calories and to increase the amount of fluid by adding in extra water feeds. He referred us back to the dietician to ensure this was done properly.

Wednesday I spoke with the dietician who suggested we move from the feed with 2 calories per ml to one with 11/2 calories per ml...and gave her an extra litre of water a day!

Eve was tolerating the 2 calories per ml feed at 55 mls per hour over about 8 1/2 hours...she had 30 mls of water ever 2 hours during that time and 50 lms of water and meds twice a day. So she was getting approximately 650-700 mls a day. They now want to up that to 1500 mls a day.

So the first day I added in 300 mls of extra water in the evening at 65 mls an hour...by evening she was drooling non stop and if positioned where the saliva could run to the back of her mouth was gagging choking gasping...Eve has a very poor swallow and cough reflex so this was a real problem. During Thrusday she sounded all day as though she was brething under water and Thursday night I was up suctioning and repositioning her many times. Friday at school she was more awake...but they didnt let her rest and by the time she came home she was grey and barely responding...I let her sleep but again was suctioning and repositioning her almost non stop to keep her airway clear...I lessened the amount of extra fluid to 200 mls then 100 mls and on Sunday and Monday have just given her the normal amount of the les concentrated feed and the bolus 2 hourly during feeding. Yesterday although she was drooling less she was having great difficulty with secretions in her airway and she had many apnoea's. She has more colour in her cheeks today and had a better night. Although still spluttering a bit is a lot better than she was.

yesterday I put a call in to her respiratologist and the Nurse practitioner from the sleep unit rang me back to say the consultant is away on a course all week. However the NP spoke to the metabolic specialist who thought the fluid increase was coincidence and probably not relevant, he thinks it is a respiratory problem, the Junior Respiratology Doctor thinks the feed regime change is most likely the cause...so we are now left between the two of them! I am certain it is the fluid increase as this was why we went to more concentrated feed in the first place when she wasnt gaining weight as she couldnt tolerate the volume.

So what do we do...I ma sure it isnt ethical to keep your child dehydrated so she doesnt drown, but how do we keep her hydrated and breathing?

I amgoing to ring and speak to the Metabolic Nurse specialist today but I just feel I am losing a battle I must wiin!

Thanks for listening