More tests....

On Thursday I took Sam to Starship for a respiratory consultation, armed with the oximeter tests from the previous 2 nights (1 with oxygen assistance and 1 without). The common thought amongst the doctors had been that due to extra pressure on his diaphram in-utero because of his huge bladder and kidneys his lungs just need a bit of time to develop. Well Sam is now 8 months old and it was disappointing to hear that clinically they aren't sure why his lungs don't seem to be developing - if anything the doctor felt that his breathing results may have been slightly down on the last test in December.

It seems that Sam can hold his own at around the mid-90's but he randomly de-sats for longer than normal periods of time to much lower than safe levels. He also has a higher than normal Co2 blood reading, which means his lungs aren't breathing out efficiently.

So a list of tests was discussed (as lung issues aren't typically associated with MMIHS), that they want to carry out to start eliminating other potential causes in the hope of finding the actual one. Tests for cystic fibrosis, tests on his upper airway, further immunology tests, CAT scan of his lungs and putting a scope down his lungs to view/get a biopsy were all discussed. I also took Sam for a chest x-ray. As he is 'well' it was decided to see what his lungs are like 'normally' - he's had many chest x-rays, but only when very unwell.

I would be lying if I said I didn't leave feeling deflated. It was a good consultation with open, honest and gentle dialogue with a lovely doctor.... but the implications of the various 'labels' of problems I heard made my mind whirl into overdrive.... but the reality of having to pick up Candace from gymnastics and get the girls home and fed/bath/bed routine before doing Sam's TPN distracted me enough to remain calm.

We do want to get to the bottom of his breathing issues so we are confident we are doing everything we can to give Sam the best quality of life.

Sam in his lovely way managed to grin through the whole consultation, cried in the x-ray as I forced his arms above his head and held him in position, but was grinning at the radiographer 2 minutes later - He is so lovely.

Last night we had a great night with a sleep over here with Grandad and Nana and 3 cousins - Joshua, Nathan & James for our regular movie dinner.... I can hear hushed whispers and feet next door (they were all warned that no-one was to be seen before 7.30!) so had better go and sort Sam out before hungry kids arrive. No photos this blog - no idea where the camera is!