17 January

I couldn’t sleep, once I woke at 4.45am. So, as Mark prepared to go to work, I called the unit. Brenda (nurse) told me that Max’d had some more antibiotics and seemed a bit ‘perkier’. She also said Dr Simon wasn’t keen to take the central line out just yet, and as the antibiotics (ventomycyn (spelling?)) were given through the central line, that should have killed off any bacteria in that area.

Max certainly looked better when I got there – a better colour. His ventilation has been put up from a minimum 25 breaths per minute (which he had been breathing above quite well) to a minimum 45 breaths, and he’s not taking many breaths on his own. He’s also in higher oxygen. However, he’s moving a bit more so he’s less lethargic than yesterday.

He had his first eye test today – so far all looks OK, but as he’s so immature it’s certainly not conclusive.

More blood tests and tests on urine and stools. I got a chance to lean very close to him and kiss him a bit. So nice. He smells so new – a bit “hospital-y”, but gorgeous. I could whisper to him.
They’re trying 2ml per hour of the very “processed” or “elemental” formula, hopefully getting the stomach working again. Dr Vanessa thinks the infection isn’t the reason for the bowel/stomach problem as many babies have sudden digestive problems. It could be a gastro-type bug, or a reaction to the long-term use of PN, or just Max. The test/culture results may help.

He’ll need more blood as a “top up”, so I’ll go in again this afternoon to donate again.
I got extremely scared, and even Mark was silent this morning. I couldn’t face the fact that an infection might take him – not the huge things like breathing or digestion. Julie saw I wasn’t looking good, hugged me and said “he’s not going anywhere” – which is exactly what I needed to hear.

I think out problem now is that we know too much, and not enough. We are making our own pseudo-diagnoses, and, without the full picture and experience, we’re unable to relax and accept the daily summaries we’re being given like we used to.

I hope this is just a bump in the road and not a brick wall.


Later –
I went back in to give blood. Max is still plodding and is in higher oxygen than usual (40-60%) and lots of ups and downs. Mark arrived, and we watched him for a while. Then, as we were intending to leave, Max took a big plummet – his tidal volumes dropped to 1-2 and then had a braddy. Huge reactions from staff, and for the next hour or so he was worked on by several doctors and nurses. They worked on his ventilation, manually, and gave numerous suctions. There were huge secretions, and then another braddy.

He had another x-ray eventually done, which shows lots of cloudy lungs – infection. Hopefully the antibiotics do something. A new IV line was put in at about 9.30pm, as the one from last night spat the dummy as they tried to put the blood transfusion through. His oral feeds have been held again.

He’s so extremely frail. We’re both staying at the hospital tonight, hoping he settles well and responds to antibiotics and fluids. We are VERY shaken. The next 24-48 hours, we’re told, will make or break him.