31 March

Max was quite unsettled and irritable overnight. Basically, they think he was hungry (as he wasn't on any oral feeds). So, he was given a bit of 'comfort food' - he actually took two lots of 20ml from the bottle! After that they said he was a bit better.

He seemed to desaurate an awful lot, and to me he seemed to need quite high oxygen amounts compared to when he was on intra-nasal, but the consultants seemed quite OK with the numbers. Just when I think I'm getting my head around the whole breathing process and all the different oxygen/CO2/lung issues Max has to deal with, this comes along, and I'm totally thrown. I feel a bit like I did back at the beginning - just trust what the staff say. I really want to understand, but I think now we are at a good 'layman's level', and to understand why descisions are made for Max now, we need to have the knowledge and experience that the staff do - to make a good balanced judgement.

Anyway, Max is back on full feeds (actually I gave him a bottle (he took 20ml) before I was told that all feeds should simply be gavaged today!), and loving it. He is also back on infra-nasal, and is not desaturating at all (or hardly at all). He is breathing a bit deeper, but there is still a bit of nasal mucous to suction out now and then. He is a bit more like his old self, and today was awake (and calm) an awful lot.

His bottom, which was so bad it was ulcerated, is healing up well. He is also processing food much better at the moment, and is now on the monogyn formula. I have decided to stop expressing milk and abandon my ideas about breastfeeding. I simply think I'll never be able to produce enough to supply what Max needs. It would have been lovely, but I realise I'm just luck to have a baby to feed at all. Anyway, there are two freezers full of bottles to get through before he's on normal formula!


This photo is from yesterday when we were putting him back on CPAP - for a moment he had no tubes in his face! (The tape on his cheeks is the duoderm ("second skin") to which his tubes are taped - this actually protects the skin on his face from constantly having tape put on and pulled off.)

30 March

Well, Max hasn't really got much better since Wednesday. He's not as floppy, but today when I went in in the morning he was really rugged up - apparently his temperature was quite low and they were trying to get him warmer. But, he was very clammy and sweaty to touch. He also had a lot of nasal secreations, which were bad yesterday as well, but now are really thick and copious. So, a full blood test was done, and a blood capillary gas as well - which showed a quite high CO2 level. Possibly he's been trying to excrete the CO2 by sweating it out, as he hasn't been doing deep enough breathing to breathe it out.

There was some mucous sent for testing yesterday, but there were no significant viruses identified (actually, there were several important things it could have been crossed off the list - they can't test for everything), and the blood test didn't show signs of any infection. So, just to set up an advance attack, Max was given some diuretics (he'd put on a fair amount of weight in the last few days, possibly some excess fluid, which can accumulate in the lungs - not good for breathing), a dose of steroids for his lungs, he was put on a drip and all oral feeds and medications stopped, and he was put back onto CPAP.

Very scary for us, especially as it all seems like a step back, but we were assured this was all to try and head any problems off at the pass, or if he has picked up a virus which then gets worse, he'll be already in a good state to fight it.

Basically, they think he had a cold - he is also coughing occasionally. This sounds pretty tame, but he's so susceptible to lung infections, a cold isn't something to take lightly. However, it could be a reaction to the immunisations, or a combination of both.

We went home very subdued.

28 March

Today Max was not himself. he was very lethargic and floppy, and he wasn't breathing very deeply at all. We made our concerns known, and the nurses said they'd keep an eye on him, but it was very busy for the consultants, so we didn't get a chance to speak personally with them.

Later we phoned up and the nurse on duty mentioned that it could be a reaction to the immunisations he'd had yesterday. Hope so - he really doesn't seem like our wee Max right now.

27 March

Well. Yet another big few days for the boy.

Yesterday his bottom was much, much worse, almost ulcerated. It must be so very sore for him. So, we're on our third type of cream to try and clear it up. He's also got very bad diarrohea, so now he's on full Elecare formula - a very elemental one, which hopefully will make it a bit better. We'll see.

His hernias are still huge, but the surgeon would prefer to wait longer to give Max time to get his breathing more under control.

He is now on "infra-nasal" oxygen - which are much shorter prongs, and instead of a mix of air & oxygen he has pure oxygen, but at a very low flow, almost nothing. We hope that he'll actually get to the stage of having no support at all, but it is likely he'll be coming home with this type of oxygen support.

He also met Grandad for the first time - see photo!

Today he has his first vaccinations, and if he has no real reactions he'll be moved to Level 2 in the next 48 hours! This is a move from Intensive/Critical Care to Special Care. We are very nervous, and we have been told that for long-term inmates' parents the transition can be quite hard. So, we're very proud of Max's progress, but are a bit nervous of the whole move. We like where we are!

His feeding will be the next project, as he is still a bit slow on the bottle (falls asleep after a short time!). He'll have to get fully able to feed before we take him home (we really don't want to have to have a nasal-gastric tube at home, unless there's no way around it). Day by day...

25 March

What a big day - I tried to feed Max with a bottle today, persevering as I have been told to, and this morning he managed to actually swallow 10ml! It was a very slow process as I didn't want to choke him, but he did really well. He was very tired afterwards, though, and fell into such a deep sleep that his heart rate slowed a little!

In the afternoon we tried the bottle again, and this time he took 25ml! Real sucks and real swallows! Unfortunately, after the rest of his feed was gavaged, we had our first real vomit to add to the fun. Ah well.

Actually he didn't throw up that much, so overall we are happy with today's work. We have been warned that he may have some great days then do nothing for a while, but we will carry on!

24 March

Max is now being tried on 3-hourly feeds. We're also trying to encourage him to suck feed. While we've been trying to breastfeed, which he seems to like, there's not much in the way of actual swallowing going on. I think he sees it as a comfort thing, rather like his dummy, instead of a feeding time. Today we tried a bottle with a few ml of feed in it, which he sucked at ravenously - for one or two sucks. However, the moment the liquid hit the back of his throat he arched his back and grimaced, and it all was spat out. He didn't actually choke - the feed didn't get that far. I persisted for about 15 minutes, tried just dropping a few drops in, tried back on the breast, tried the dummy, then back onto the bottle. Same thing again.

Jenny (nurse) tried him on the bottle again in the afternoon, and she had the same reaction. In fact, his O2 requirements went way up (to 60%) as a result, and he seemed exhausted. This had just happened when I arrived, so we finished the feed (gavaged) and I picked him up. Within 5-10 minutes he was back at 28% O2, so the panic was over.

My fear is that this will prove to be a big problem. He needs to get the concept of sucking and swallowing food. Up 'till now all the sucking has been for fun and comfort (dummy, and breast to a certain degree), but the rush of liquid he gets when he sucks a bottle seems to really frighten him. We may have to get the speech pathologists in to see how we can retrain him to suck and swallow.

Maybe I'll have to give up the whole breastfeeding idea. I'm really not getting a great deal of milk, and the only long-term way to increase the amount is for Max to suck feed. I always knew that breastfeeding may not be a real possibility for us, but it would be good to be able to get it going. However, maybe it would be better to encourage him with one feeding method (orally) only - and maybe that's the bottle. Ah well. We'll have to see how he goes this week, and I'll try and get some really good advice - there are a couple of staff who deal with reluctant feeders all the time, so I'll try and sit with them and work out what the real options are. I truly hope he gets it - it's quite scary to think something as basic as feeding could be a big problem for him.

21-22 March

FOUR MONTHS!
Yes, today Max is four months old - or just over one week, depending on how you look at it! He's really come on in the last week, and now is over 3kg in weight (3060g today and 45cm long). Yesterday he was moved to 3 litres of O2 in his intranasal flow, and so far he's travelling about the same in his saturations. He doesn't desat as much anymore, but occasionally dips to the low 80s. Mostly, low numbers on the monitor seem to be related to a bad 'trace' - the sensor on his foot not picking up his blood flow very well. Usually this is when he twitches or wriggles.

Today we had a very successful bath - even got a bit of a smile at one point. I put all the monitors/sensor back on him by myself, and even got them right! He's been having a go at breast feeding, but yesterday and today he has one good suck, then promptly falls asleep - literally, he just goes all 'sleep floppy'. Extremely cute, but he is going to have to learn to work a bit harder to get food. Our latest advice is for the staff to try a bottle (or at least a teat) when he is doing the 'hungry' thing - especially when I'm not there. Even when I am, we will try letting him demand food, and then give him a few ml through a suck feed. We were told horror stories of children who become dependent on the nasal-gastric tube and hate having anything in their mouths (food-wise), so they become very hard to feed. I thnk he'll be fine, but it will mean we spend more hours at the hospital every day to be around for more feeds.

The unit is extremely busy at the moment, all Level 3 beds are full, and apparently the other Children's Hosiptal in town is also full. They (collectively) are 'on divert' and are sending any new intensive care cases by air to Melbourne. Max is, apparently, possibly going to be moved to Level 2 as he isn't as high-needs as some of the others! There are 2-3 other children who'd be moved first, but this is huge. We don't know if it actually will happen, or if it does if it would be temporary, but if it does, I'll be living at the unit for a while! The Level 2 staff are great, but they (in general) are a different set of people, and the routines are very different to the intensive care of Level 3. We know that it is extremely hard for the parents when this change is made, as the ratio of staff is much lower. Obviously, this is because the children don't need one-on-one or one-on-two care (as in Level 3), but it will be a bit of a 'culture shock' for us when it happens.

Little things - the nappy rash/excoriation is still bad and elicits gasps and intakes of breath from staff when they see it. So, we're trying another medication to try and get it healing. It did bleed a little today, even with me gently patting him dry. Despite our best attempts, he has developed a common problem with long-term care infants and has one side of his head a bit indented. this is because the cots are all set up for the carer to work from the right-hand side. So, it is generally easier for the nurse to put the baby with their head facing to the right. We have tried to encourage Max to put his head to the middle or to the left, but now he finds it a bit odd. So, we routinely move him onto his left side whenever we put him to bed after a cuddle, in an attempt to lessen the pressure on the right side. Hopefully this will 'even out' after a while.

17-19 March

Quite a big weekend for the little one. His last weigh put him back on the increase at 2970g. He has rediscovered he actually likes a bath (after the last two were not enjoyed at all), and they are much easier now that the central line in his head has gone. He is also working hard at the breastfeeding and is managing to get a good few sucks in, and occasionally actually getting something out and swallowing it. This is actually quite difficult for him, as all his feeds to date have been through a gastric tube, not through any kind of suck feeding.

He has also been introduced to the joys of nappy rash with some extremely excoriated skin. Poor wee mite, it hurts him quite a lot. Today he was very hard for the staff to settle, and what with the hernias also quite uncomfortable now (they are huge!) they gave him a stat dose of panadol, which seemed to work quite well.

We are having daily cuddles for a decent length of time now. He is also much more awake and his eyes seem far more focussed. He seems to make eye contact far more easily, and is also starting to notice the toy hanging above his head in the cot.

In the last 24 hours he has gone from hourly feeds to 2-hourly feeds, which so far he seems to be tolerating well. If it contnues like this, tomorrow they are planning to give him a go in infra-nasal oxygen, rather than the intra-nasal he's on now. Basically the difference is that the intra-nasal is driven into the nostils with longish prongs, and is an air/O2 mix. The infra-nasal (which is the type we may have to take him home on) is purely O2, and apparently the prongs are much shorter. He will also be getting far lower a flow of gas, so he'll have to breath a little bit deeper himself to get the real benefits. Hopefully he'll take to it immediately, but he may need to go back & forth between the two for a while until he gets used to it.

We actually felt safe enough today to go out and put all the baby 'equipment' on layby (cot, pram, car seat etc). Yay Max!

16 March

I haven't posted for a few days - but Max has been doing very well. He's met a big milestone today in that he is now on 'full feeds' and so his central line has been taken out. Yes, there are no invasive tubes in him anymore - apart from his feeding tube. A huge step forward and we're so thrilled.
Yesterday we had another go at breast 'feeding' - this time he actually did latch on and suck for a moment or two. Today was much the same, so hopefully we'll both get better at the whole thing.
What is odd is that his problems now all seem to be 'normal baby' problems. He is getting reflux, which causes him to cough a little, and get quite upset. He also has nappy rash, which also is obviously very sore. On the good side, his oxygen requirements are a little lower (around 27-31%) and his major wound site is looking good. His last eye test was good (thank heavens), and his liver ultrasound on Wednesday showed nothing that wasn't already known. He is still quite yellow, including the whites of his eyes, but all seem confident that now the PN is finished with he will soon get the liver working properly again and the bilirubin counts will normalise, along with his colour.
It is my birthday today, and I am absolutely thrilled that my boy is still here with us. I had a lovely card waiting for me at the unit, from Max (with a little help from his wonderful Tato). Nearly made another spectacle of myself and narrowly escaped blubbering in public again! We hope Max is home with us in time for his Tato's birthday...

13 March

Nice morning – Max is doing well on his feeds – though he may be a little lactose intolerant again, so the feeds will be changed to half EBM-half monocyn (a lactose-free formula) to try and allow his bowel to process the food more effectively. As of this morning he is on no PNS at all, so hopefully his liver can begin to repair itself. Apparently his bilirubin levels are better already (blood tests this morning), and as he is looking quite yellow, we hope that these levels continue to drop.

Had another go at the breast as well. He’s still a bit vague about the whole thing (as am I), but he did manage to get his mouth open and attached somewhat, but didn’t get any form of suck happening. We’re getting there…

12 March

Max’s Due Date! Yes, today’s the day Max was supposed to make his first appearance. Instead (as someone said today), we’ve got to know him for an extra 16 weeks!

Today was actually quite fun – Max had a weigh (2875g) and a bath (which he hated and screamed throughout), then all clean, new clothes. He had a big 10ml feed (and he really was hungry), then a bit of a try at the breast. He didn’t really do much, just vaguely hung around. Neither of us really knew what to do! But, it was a good start. He had a couple of ml of his feed through a teat, just to practice ‘suck feeds’, which he took beautifully. Unfortunately he then got a huge snort of water up through his oxygen tube, so he spluttered a bit of milky water back up. So, yet another clothes change – lovely new clothes lasted about 15 minutes.

He then had a very nice cuddle with me actually standing up, and he went to sleep in my arms.

We visited again in the afternoon, and he was still being very good, although still looking hungry. His feeds have been accelerated, so hopefully no PN at all by tomorrow morning!

11 March

So much better today! When I visited this morning, Max was still on 4 litres of flow, and saturating well on 30% oxygen. I did a change of nappy & clothes when he woke up (and seemed hungry), fed him (now up to 8ml per hour), then a cuddle. He sat in 27% throughout, with only a few desats. However, he was breathing very rapidly – 120-150 breaths per min. After about an hour or so, he did settle down, but it was quite strange.

So, the plan is this week to get him up to 15ml per hour feeds, check for a few days to see if he’s tolerating it all, then hopefully take out the central line (which is in his head at the moment). They’ll have to be really sure that he won’t need the PNS anymore, as it would be quite a headache (no pun intended) to have to put it back in. Anyway, it’s the PNS that is doing the damage to his liver, not the actual line itself, so hopefully once the PNS is eliminated, the liver will begin repairing itself. He has a liver ultrasound tomorrow, just to check out what’s going on.

10 March

Quite an unsettling day today. We went in this morning, both had a cuddle (see pic of Max sucking his thumb while being cuddled by Tato), then Max had a bath and a weigh (up to 2730g). Over the past few days his oxygen requirements have gone up slightly every day. Today it was worse – needing 40-50% normally and up to 70% when he desats. It was quite horrible to watch – he simply wasn’t breathing up. Eventually the consultant on duty agreed that he’d try Max on 4 litres per minute flow, and if he doesn’t respond, then they’ll put him back on CPAP for a while. While this sound like a step back, it actually made us more comfortable.
This will be the real long haul – getting his lungs better. We know (as were reminded again today) that there is, in all likelihood, going to be some neurological damage, but how that will manifest in Max, we won’t know for a while. For the meantime, it’s the lungs that are the real problem. He simply has to learn to breathe properly, and with new lung growth, hopefully the oxygen processing will become more efficient.
Tough day.

9 March

This morning Max was really beautifully asleep, so I didn’t disturb him at all. His feeds have gone up to 4 ml per hour, rising 1ml every 12 hours. Apparently he’s exhibiting “hungry” signs (including sucking ferociously on his dummy, which he is now able to hold in his mouth himself a lot of the time), so maybe they’ll up the feeds more often.

Lung x-ray showed nothing unexpected, so we’re still ‘only’ dealing with Chronic Lung Disease.

He’s occasionally giving a little smile/grin – which I simply cannot catch on camera. This photo is the best I could do (he took me by surprise, and as I don’t use a flash, it’s a tad blurry!). Bless.

8 March

I spent ages at the hospital today. Max was basically no different, but his oxygen requirements are up to 35-38%, sometimes higher if he can’t get himself out of a desat. It’s a bit worrying – I hope it’s only growth needed, and no other problems. They did a chest x-ray today to make sure there's no other respiratiory or lung issues.

He had more blood taken this morning for full blood tests. They check all kinds of levels, and hopefully he’ll be OK on all counts. His bilirubin count is high, almost double the last one, which means his liver is getting worse. They’ll have another ultrasound soon to make sure there’s nothing untoward happening.

Kirby (surgeon) came in to check his wound site. He seems very happy, and said we could take the sutures out (there are four) today. He also said the hernia can wait a while before being fixed, which is great.

Feeds are up to 3ml per hour.

7 March

Overnight Max had several braddys, some which seemed to be from the water-in-the-tube cause, but the others didn’t seem to have any real reason. So, hopefully just some minor hiccups in his growth, rather than any ‘getting tired’ kind of reasons.
He’s staying on 2ml EBM per hour. Feedings will increase very slowly at first, to give his bowel and stomach time to get used to the process, but hopefully once he gets better at it, the amounts will increase much more. Then, they can think about taking out his central line and ceasing the use of the PN (Parenteral Nutrition). It’s the long-term use of this which causes his liver problems, and problems with the processing of bilirubin (basically, the same problems which cause jaundice, just a different cause). Max is a little yellow at times, but we hope that once the central line is out, and the PN is stopped, his liver will be able to get back to normal by itself.
I changed my first poo nappy (well it wasn’t poo-y when I started, but Max joined in halfway through and it soon became a very messy operation). We then had some bloods taken, got him all cleaned up and in clean clothes, and had a cuddle for about 45min. He didn’t sleep, but was awake and very baby-like – looking around, little wriggles, putting his hand in his mouth etc. Didn’t get upset and barely desated at all. Well done, Max.

6 March

This morning Max’s gastro surgeon came in and worked on his bowel, which seems to have allowed the lower parts of his system to begin passing gases and normal movements. This probably wasn’t a comfortable process, but he certainly should be more comfortable now!
Feeding is up to 2ml per hour. His latest blood tests were reasonably good, but he’ll have another FBT tomorrow.
No braddys overnight, but he did have one while we were there in the afternoon. We think it’s most likely from some water coming down his breathing tube (condensation), which then irritates a nerve in his throat, causing the heart rate to slow momentarily.
I gave him a bed wash, and we took the dressing off his wound. Very neat work – about 1.5 inches across, and from memory) about 6 stitches. He’s going to have some great stories to tell in the pub when he’s older…

5 March

Quite a nice, stable day. Max slept very well overnight – from midnight to about 8am – and had no braddys and no big desats. He was in 26% oxygen when I arrived, and was told he’d pretty much been in that % all night.
No more bowel movements, but apparently the surgeon had been in, and while he was pleased with the progress, was going to do an ‘anal dilation’ sometime today. Sorry, Max, you don’t really need this much of your life on record! Basically, though, the lower parts of his digestive system have slightly atrophied during all this time of disuse, and so they may need a bit of help getting wide enough to allow movement through. Sounds messy.
His breathing is good, so Vanessa (consultant) decided to try him on3 litres per minute through his low flow, rather than 4 litres. He did seem to struggle a bit while I was there, with a couple of desats, but with higher oxygen (30-35%) he seemed OK.
He had a follow-up eye check as well, and they seem pleased with the post-surgical appearance. Next eye check will be a week from Wednesday.

4 March

Went in this morning to see Max STILL on intra-nasal! So, we think it’ll be pretty much no looking back from here. His flow was up from 2 litres to 4 litres, but the oxygen requirements were about the same – 28-35%, mostly around 31%.
And, the big overnight event – his bowels have begun working! Yes, Max did a poo! A huge achievement, for which he was thoroughly congratulated by all. I had nurses stopping me in the corridor to congratulate me. Very nice, but quite odd when you actually think about it. So, later today he’ll begin 2ml of EBM every 2 hours, and see how that goes.
I gave him a bed bath, during which he wriggled and whinged, and then a cuddle, which he seemed to really enjoy. He is so much easier to handle now! We weighed him – 2530g (which is 10g less, but considering he hasn’t had any oral feeds for a week and has begun proper bowel movements, this is fine).

Later- we went back in so his Tato could give him a cuddle too. Picture is of the 3 Anolak Men (Digo is visiting from Melbourne), and another of Max sitting up (!) in his Tato’s arms and vaguely opening his eyes. Tomorrow Max gets another eye test, to see how the surgery has worked, and I think his bowel surgeon will also turn up at some point tomorrow to check him out. So, overnight we need that bowel to keep working, and begin digesting the EBM properly. Big day, Huge weekend!

3 March

Morning – he’s doing well. Scott (consultant) made a few checks and decided to put him on intra-nasal air (which he loved). Again, his oxygen requirements have gone back up (he was down to around 30% on CPAP), but hopefully will quickly drop.
His gastric tube has been on a ‘drain’ operation, where the stomach juices have been allowed to flow upwards and out the tube into a collection pot. They have measured this output to see how the stomach is going and if there’s any problems from the digestion point of view. Scott has taken this away, now, and put the little stopper back in the end of the tube. This means the secretions will stay in the stomach, and hopefully begin to work their way through the bowel. Scott says he can only hear small / infrequent bowel sounds (apparently he had an abdominal x-ray yesterday before he was extubated to ensure it all looked good), so hopefully allowing these secretions to pass through the bowel will prepare the gut for some kind of feeding tomorrow.
We hope that the feeds will be EBM (Expressed Breast Milk) from tomorrow, rather than Elecare (a very elemental formula). The milk room told us to start storing the milk at home (from about mid-January) as they had a couple of shelves in their freezers of “Max Milk”. There’s not much in each bottle, but with 6 bottles a day, it soon mounts up. We, too, are starting to run out of room at home, but I am assured nothing gets thrown out and we get to take it all home if it’s not used up by his discharge date!
After he was put onto intra-nasal, Nina (nurse) turned him onto his stomach. Normally he loves this position, but he simply wouldn’t lie with his head to the side. Whichever way we put his head, he’d turn him back and lie face-down into the mattress. I had to take a photo before leaving Nina to work out what to do! We’ll go back today and have a cuddle- first in almost a week!

Later – we went back in at about 6pm and Max was still on intra-nasal oxygen. He was also in a Big Bed again, and was dressed! We’re hopefully back to at least where we were on Sunday last week (pre-operation). I got to have a cuddle, for about 30 minutes.

2 March

No phone call overnight. This morning he was looking less puffy than yesterday, and Angela (nurse) says the two doses of diuretics have certainly worked (big volumes of urine output). His tubes are all a bit loose, so we watched him very carefully to make sure he doesn’t dislodge it.
Vanessa (consultant) examined him, and listed for ages to his abdomen. She is confident she can hear bowel movement!!! So, she’s decided to extubate him today. She’ll call the surgeon & tell him what she intends, and then, if all is OK, extubate him. He really hates the ventilator and the tubes, so it’ll be good to give him a bit more freedom. Hallelujah!The wound site and surrounding areas are much less red than yesterday, and I can’t really see much in the way of swelling, so he’s healing well. We’ll call later today & see what the deal is with getting him extubated and if it’s already done, how he’s going.

Later – Yes, he’s on CPAP and off the ventilator! As expected, he needs a lot more oxygen (40-50%), but we expect that he’ll slowly wean back down to 25-30% over the next 24 hours. He’s obviously a lot more comfortable. He did try a little cry when we arrived in the afternoon – but his voice is very husky and sore as yet. Well done Max!

1 March

DAY 100!
Yes, we’ve made it to 100 Days Of Max. It is quite incredible for us to think we’ve been trekking to see Max for a quarter of a year – we’ve walked those corridors upwards of 300 times as we make our daily (up to 3 times daily) pilgrimage to FMC. Max is joy, a trial, a wonder, and our miracle.
The unit put up a ‘congratulations' sign, and he had a cake presented and a lovely, if tentative, chorus of a modified “Happy Birthday” was sung to him. Upon hearing this, he promptly flinched, wriggled, and desated. Luckily the nurses didn’t take this criticism to heart.
Again we were told that Max simply wasn’t expected to make it this far, and that the combination of his issues is almost unprecedented. It’s nice to hear in some ways, but mostly incredibly confronting.
Today’s progress was little. Bowel isn’t moving yet, and as he’s becoming a bit more ventilator-dependant, Peter (consultant) decided to change a few of the settings to try and make up breathe up a bit more and move the ‘respiration muscles’ himself. There’s also increasing amounts of secretions – in the lungs and nasal passages – so he’s being suctioned more regularly, and he’s having some more diuretics to try and remove some of the fluid on the lungs.
We have asked that if the bowels start moving overnight then someone phones us. Quite a strange request, I suppose, so it’ll be an interesting conversation- “Your son has filled his nappy!”…