Upset Arthur, upset parents

It seems Arthur had a somewhat painful night. The minor bits include a need for slightly increased ventilator pressures and to restart phototherapy. He has also been vomiting several times.

The more major thing is his continuing need for a long line. His Umbilical Vein Catheter (UVC) has a life of about a week to 10 days and he is at ten days now. It is not visibly infected but needs to come out pretty soon. That means he needs a long line to replace it (similar to a central line in an adult). This allows him to continue his TPN – food directly into the veins.

The SHO had several attempts yesterday and another doctor also tried overnight. His morphine has been stopped so he’ll have felt these. Sadly they were unable to thread a line properly. It happens. Amy and I came in this morning to see Arthur much more ‘jumpy’ than usual. He withdraws from touching and his heart rate races to over 200bpm when he’s stroked. He has about seven puncture marks on his right leg alone. You can understand the effect this has had on Amy.

His white cell count has risen to over 18 (a possible infection marker) and his CRP has risen (from 0.4 to 1.4, so still v. low). Amy and I are, of course, paranoid about infection as he’s really too tiny and fragile to cope with a big insult. Nothing concrete yet but we’re watching like hawks. Every hole in his skin increases the risk, of course.

Now we knew they’d be hard days, and I’m sure that in the grand scheme of things today is a nothing but it is really hard to see the little guy unhappy. And they’ll still need to successfully place a long line during the day today.

So – not coming off the ventilator just yet. Not ready for cuddles right now. May be brewing an infection and due to suffer a painful procedure today. Humph and double humph. Not aaargh, or swearing, but definitely humph.

On the plus side – and every day needs a plus side – Arthur had his hat changed today and we can confirm he has two ears and brown hair… which was great. His hat is what is used to secure his ETT (breathing tube) so while it is being changed his tube has to be held by hand. Watching the extreme care taken to do this by our lovely nursing team was a real joy. And when four hands weren’t enough Mum and Dad had to lend a hand to massage his ears so they didn’t stay too squashed: yummy!

His UAC (his invasive arterial blood pressure monitoring) can also come out today. A gentle marker of progress and stability – phew.

As we speak, he’s resting happily. Dr Nadia (the SpR) has been lovely talking through the options with a stressed set of medical parents, maximum points to all.

So here are this morning’s photos:

Many hands make light work

A squished ear!!

Love Simon and Amy x