Reu a little unwell

Took Reu to Children's yesterday for what became a very quick appointment in pulminology and Dr Platzker duly signed off Reu's lungs for the next 5 months, albeit sounding a little "crackly", perhaps on account of us weening him off the diuretic Lasix and the accompanying NaCl at home in an attempt to cut down the plethora of meds that go into his little stomach. We were concerned today, after such great success on the feeding front in the last 2 weeks, Reu taking 3x bolus feeds of 100ml during the day and the remaining 600ml by pump at night, a total jump of 100ml, that Reu should have suddenly thrown up 4x today, Christine, our wonderful nurse, reminding me actually 5x. But Reu was looking himself so I put it down to many other reasons.

Leaving Children's, I start a feed in the car and realise that the Gtube is coming out again, the little stoma in his stomach peeking up at me. I guess it was a record, 3 weeks with the current Mickey button. So, about turn on the highway, and back to Children's, repark and into the Emergency Room we go. We arrive home several hours later and in retrospect, I wish we'd just left before the ER to do the change at home, knowing we had our spare Mickey there.

A very long night then ensued with Reu waking us up about every 20 minutes to be suctioned, copious secretions flowing out or, at times, a dry retching cough that we can feel the discomfort of in our own throats.

Today, Christine looks after him marvellously well and manages to get 2 feeds down, in between the suctionings whilst I catch up on some sleep. Feeling pretty worn out at the moment, but generally amazed I haven't been sick myself since Reu's been with us. Children's suggest it might be a virus from the speed at which he came down with it and suggested we come in for a trach culture and possible hospitalisation.

It's 5pm, and after episodes of Baby Singing Time, Reu's sleeping next door with his exhausted daddy. I hope that peace will last with him through the night.