Dylan Henry Jones - Week 2

Saturday - 10Mar12
His veins are really not very good.  The arterial line that had been put in a few days ago gave up the ghost early this morning.  A reasonably unsettled night, so his painkillers have been switched back from Fentanyl to Morphine (partly because of the high levels but also because it's felt that he prefers it).  Another reason for his unsettledness is that his right lung has partially collapsed.  Possibly due to the change in ventilation, but last nights xray looked ok.  Either way, there is a lot of gunk within his lungs so he's been giving drugs to loosen that up and a physio is turning up at lunchtime to shake everything up and loosen everything.  Just to add to the fun he's getting a rash.  Poor little man.

In fairness it's probably far worse for us than it is for him.  No one is worried about what has happened it's just what we need to expect and although we know it's going to be a long healing process, the steps he has made had perhaps given us hope of being able to bring him home sooner rather than later and that means any steps back are harder to take because of that.

Lots of visitors due this afternoon.  BTB and her boy are coming for a visit as is one of my brothers and his wife (and children).  Unfortunately the children won't be able to visit.  Hopefully they'll all arrive after the Wales game and I can deposit BTB in front of the Scotland game.  I'm sure they'll be happy especially as the local (Robin Hood) has a cider festival on!



Friday - 09Mar12
Hard to describe today.  Dylan has been awake and busy.  Mostly busy trying to remove his ventilator.  He's been doing really well with really low painkillers and ventilation levels which mean that the tube could come out and he be put on a different form of ventilation.  At one point he got so active that the nurse looking after him got the alternative ventilation system ready just in case he took matters into his own hands.
However, he remained good and during the ward round it was decided to remove the tube and to see what would happen.  As it turns out, he might be ready for the tube to be removed, but apparently his lungs disagree.  So he had to be re-intubated and he's gone back several steps in terms of increased pain relief and ventilation.  This is to be expected.  Further attempts will be made after the weekend once he's returned to low levels of pain and ventilation relief as he's been very unsettled.

On the feeding front he hasn't been so good, he hasn't really accepted the Mothers' milk - or rather his stomach isn't ready to accept the Mothers milk.  It's also been several days since he's had a poo so he's had to be given a glycerine suppository and he really doesn't like that!  

We're not impressed with the current consultant.  He's probably very good, but we just don't get on with him.  He's brusque to the point of rudeness.


Thursday - 08Mar12
Midnight: I wasn't expecting that sort of call for another 16 or so years, possibly when he too has a motorbike and learns a valuable lesson about Newton's Laws of Motion but more importantly that overtaking at a crossroads is not cunning.  Anyway, the conversation went something like:
nurse: "Is that Dylan's Dad"
me: "yes"
nurse: "Now there's no need to panic but..."
Anyway, what had happened was that his peripheral lines had all given up the ghost, they were struggling to replace them and so an anaesthetist had been called to put in a longline.  On the ward rather than in theatre (it was midnight so couldn't really call the ambulance or lose staff from the ward for reasons of patient safety).
The anaesthetist had to have two goes before getting in a femoral line.  It's not the best line to put in as it's more prone to infection than a neck line, but it should only be in for 5 or so days.  On the plus side, no need to get up early to see the surgeons and he can at least get full dose food.

An unsettling start.  There is a rotation of doctors across hospitals in the South West.  This is all part of their training process (from SHO to Registrar).  So we say goodbye to a lovely ST2 and a whole new bunch arrive and are induced.  Obviously in a different way to the Mother.  As part of this induction, they are shown how to take blood from an arterial line doo-dob (technical term describing the pot mechanism that allows them to take blood easily).  I appreciate that this is important training and don't really have a problem that Dylan is the subject.  I didn't particularly like the way the Sister giving the demonstrating pretty much ignored - or gave the impression of ignoring - the fact the Dylan's heart rate was plummeting and his breathing wasn't so good.  I really wish that I hadn't witnessed that.  It does worry me what we do miss given that we are not by his bed 24 hours a day.

But mostly Dylan has had a very quiet day.  For the first time he was given the Mother's milk (well the first stage - colostrum ) which didn't really go down very well.  Oh well it's a start!  He's also being weaned off the ventilator with the view to take the ventilator tube out in the next day or so.  He'll get a different form of ventilation which won't involve the tube (CPAP).  The Mother is unconvinced as to whether Dylan will tolerate that either.  He has his father's tolerance clearly.

Tomorrow is a big day as he goes for surgery first thing in the morning.  Well, goes to see the anaesethetist who will attempt to put in a longline.  Hopefully this will pass without note, and Dylan can get feed properly for the first time.


Wednesday - 07Mar12
Dylan has been very naughty - pretty impressive for someone bed bound on a ventilator with lots of tubes attached to him!  He pulled out his stomach line.  Probably in a fit of pique.  This is the line that keeps his stomach deflated and is also used to measure how much bile he's producing.  This determines when he will be allowed food (real food - which the Mother is generating at regular intervals and is currently generating her own little milk lake).

This one is trouble.

There were further discussions on longlines.  Problem of having no real continuity between people looking after him (this is nothing to do with the standard of care that he's receiving - just that as new people come in, as parents you tend to have the same discussions).  So, this time todays registrar has found a nice vein in his leg which he things will do the job.  He's reluctant to send Dylan for surgery due to the risks of the surgery as well as the need to transport him.  Somewhat reluctantly we agree.  The plan is that he will attempt to get a longline into Dylan through the vein he's found in his leg (which ends up in his abdomen - this is a tube roughly 25cm in length that is fed through the vein).  Dylan will be given extra sedation and paralysed in order to minimise his discomfort.

A few hours later we get a phone call from the registrar saying that it hadn't worked.  He had only managed to feed 8cm's worth of line through.  So surgery it is.  No real idea of when this will be - it's in the hands of the aneasthetists.  Deep unabiding joy.

When it gets to story time, Dylan is really not terribly happy: he's struggling for breath and his heart rate is all over the place.  It turns out that his ventilator tube has slipped 5mm or so.  This is enough to cause part of the right lung to collapse.  Given that's the working one that's not ideal so the tube is re-positioned and the difference is both marked and almost instanteous.  Quite incredible.


Tuesday - 06Mar12 
Today was a quieter day.  He's still an angry little boy and doesn't like being disturbed by the medics.  And they have taken note and are giving him a sedative bonus whenever they are about to do anything to him.  Also, now he has an arterial line back in so that means the heel pricks have stopped.

We had a very useful meeting with the consultant during the ward round - the joy of being the only parents there for any of the beans in the room.  She seems really happy with his progress so far.  As far as the long-line goes if it is to be done under surgery then there are two options depending on how long the line needs to be in for.  It is expected that it will only need to be in for a short period of time and so the entrance point of the line will stick out from his body rather than being tunnelled.  The former is potentially a point of infection but given that it's not expected to be in for very long that's unlikely to be a problem.  It only needs to be in long enough for him to be able to tolerate food in his stomach rather than intravenously, but he needs full-strength intravenous food which can't be applied to peripheral veins.

Pulmonary Hypertension - when beans are in utero they don't need their lungs.  Thus the body decides not to waste time by pumping blood to them.  This is achieved by using higher blood pressures and the veins (in the lungs) as a result of this clamping down and stopping the blood flow.  Dylan is still doing this when he gets upset.  This is common even in beans who don't have CDH and is an ability that fades over time.



Monday - 05Mar12
Today is a two-step back day.

Marks from longline attempts

Two more attempts have been made to get a long line in. We witnessed the last one. It's too much. It's gone beyond the point where other options should be considered. Finally it looks like the medics agree and surgery will be discussed (to get a line in). Obviously there are the attendent risks that go with any surgery but they're not going to get a line in any other way. And no line means no food.

Also witnessed, was the heel prick procedure. It's horrible to watch. Dylan scrunches his face with pain, opening his mouth to scream (which he can't, because of the tube) and waves his arms around and his sats (oxygen levels) plummet so they have to boost his oxygen and morphine because his blood tests are poor and from our point of view this is because he's being handled and disturbed and filled with needles. You can't even give him a cuddle to comfort him. And then between stories they were trying to improve his sats by cleaning out his lungs and airhose. This causes his heart rate to halve and is just generally very disturbing to watch.

Yes - to quote Dirk Gently - we're having the sort of day that would make Mother Theresa kick babies.

In actuality, he's probably no worse than he's ever been. But it feels like we're going backwards. Saying that, there is a problem with today, the consultant thinks that the sudden drop in sats when Dylan's distressed is because of pulmonary hypertension. Which explains the behaviour of the measurements. This is bad and needs to be controlled. So overnight we understand that he will be given a sedative to calm him down and also that they will try and replace the arterial line. This will mean the heel pricks will stop, reducing his distress. It also means that they will be able to measure his blood pressure consistently which they haven't been able to do since the old line stopped working on Saturday.

Here's hoping that tomorrow is better.

Sunday - 04Mar12
Dylan is a week old!
Wow!
Would not have believed that - or that he has done as well as he has.  Quite incredible.

However, it's clear that we're now into slow-time.  This is the time where Dylan learns how to breathe and how to eat.  We know this from listening to the consultants at the ward round (each set of parents are allowed into the discussion for their child but not anyone elses).  Occasionally this means getting up early (730'ish during the week or 830'ish at the weekend) but more normally 2pm.  Dylan hasn't really progressed with his breathing (in terms of them changing rates on the ventilator or on the amount of oxygen he's getting) and they're keen that he does - as are we.  At the point he comes off the ventilator he moves room - out of ICU into HDU (High-Dependency).  Which is progress.  The painkillers are reducing and the types of painkiller are also changing - he's getting paracetamol as well as the morpine.  But getting him breathing would be better.  So they are going to change the type of ventilation as well as the rates and see how he copes with it.  Everything else is fine - but he's not improving.  We are looking at least a further 4 weeks before he could come home but could easily be double that (and then some).

Dylan needs an arterial line from which the blood pressure is measured, but also it's a single point from which blood can be taken. The principal reason for blood is to check the gas content which is a regular test (every 4hours or so). This line was peripheral (wrist). Overnight it stopped working and was taken out: well it had been in almost a week. So a new method of measuring blood pressure needs to be used, but also blood is now taken using heel pricks and the gas calculations are now different as are the numbers - not necessarily badly. Just different. Which makes comparisons difficult.  He really is becoming a pincushion. However, the inability to get a new arterial line in is comparatively trivial to getting a longline in. The arterial line is for monitoring, whereas the long-line is for drugs and intravenous feed (TPN). Furthermore, full strength TPN can't be given peripherally. At the moment he even has lines going into veins in his head. I get the impression that the medical staff are not totally impressed with the surgeons in bringing back Dylan without a long-line.

A number of people have contacted me (rather than the Mother).  An apology for either slow response or lack of response - things get lost amongst the vast quantity of junk mail (mostly from Amazon) and I'm not clearing them out quite so enthusiastically.