Month: September 2010

Well, this has been an interesting few days for us and for Matthew. Matthew started on Thursday, by being a little restless, but this could have been due to the blanket he was under which caused him to have a high temperature.  I got him cooled down, and by the afternoon he was still a little restless, though his temperature was “normal” – still over 37, but he wasn’t showing any sign of an increased heart rate with it.  The doctors decided not to do a sepsis work up on him, to check for infection.  He was still restless in the evening when Jen got back from Kelowna.

On Friday, he was still restless, and he had some high temperatures.  By 6pm, they decided to do a full sepsis workup on him to check for infection, so blood and urine were cultured, a chest x-ray was done, and a lumbar puncture was prepared.

The chest x-ray came back, and showed that the PICC line had moved slightly – into his heart.  This is a bad thing.  So, before the lumbar puncture, they withdrew the PICC line slightly so it was no longer in his heart.  Almost immediately, Matthew started calming down – but Jen and I had a very restless night at the hospital as a result.

By Sunday, Matthew was pretty much back to normal, though his PICC line keeps bleeding at the entry site, so the nurses change the dressing, only to have it rebleed a few hours later – it’s something that needs to be kept an eye on.

We also had a nephrology consult on Friday, who indicated that Matthew was probably not needing to be on diuretics any more.  It’s a long story, and I’m not sure of the science behind it, but even though he has fluid under his skin, his kidneys seem to be working fine, so they want him to be weaned – slowly – very slowly – off his diuretics.

Monday. Today.  It was decided unanimously by everyone – including us – that we should try to extubate Matthew.  He will still need to be on a CPAP ventilator for a while, but they want to try him breathing without the tube down his throat.  A search was made for a suitable ventilator for Matthew, and a Bi-PAP mahcine has been found for him, and he has been given a steroid shot (we think to help open up his airways a little more), and in about 3.5 hours from now they are going to attempt to extubate him.  There is no guarantee of success, so they have an anaesthetist on standby, plus all the drugs they need to re-intubate Matthew if they need to.  So, I guess we’ll be waiting nervously around 9pm tonight while they attempt to do this.  Certainly we think Matthew is ready – we can even hear him attempting to cry – vocally – around his tube.  it’s a very strange eerie sound!  And I think Matthew will be a loud noisy baby when he comes off and he’s upset… I can’t wait to hear his voice 

Jen has popped back to Kelowna to see her Mum & brother, leaving me with Matthew.  He’s been pretty good the last few days, and this morning, his PEEP was lowered from 8 to 7, which is another step on the road to extubation.  We don’t want this to happen just yet, as we want them to take it slowly and be successful the first time they try – I can’t think of more things traumatic for someone to have a breathing tube removed, only to have it reinserted a few hours later.

After lunch, Matthew was a very fussy little baby – nothing I would do would settle him down.  But during his physio session this afternoon, the physio therapist said that with lower pressures in the ventilator, Matthew could be experiencing trapped gas, as the pressure is no longer there in his lungs to keep the gas from coming back up his stomach.  Sure enough, when she was doing his chest compressions, Matthew passed a lot of wind and pooped – and immediately (after a quick nappy change) he was a very happy baby – check out the new video (also available on youtube…) and watch him looking at Sophie, rolling his eyes trying to stay awake!

He stayed like this until around 4.05pm when he started getting fussy again, and remained fussy until he got his morphine – obviously wasn’t appreciative that his nurse was having to deal with another baby that kept bradying, and was therefore late giving him his meds!  Once he got them, he settled down quite quickly and went to sleep – he’d been awake for nearly 4 hours by that time, so he was probably quite tired.

Matthew is missing his mum, though he has given some nice big smiles when he has seen me.

Today, Matthew’s ventilator mode was switcthd to “CPAP” Support (Continuous Positive Airway Pressure), from the traditional mode.  What’s the big deal with this?  Put simply, it means rather than the machine breathing for Matthew, Matthew is breathing for himself – all the machine does it “top up” the breath he takes a little bit.  It’s still keeping his lungs slightly open (the term “positive airway pressure”) to prevent them from collapsing, but this is the “big step” to take when moving to breathing on your own.  We were here 2 and a bit weeks ago, and he’s only been on this mode – as a trial – for 10 hours so far, so while it’s positive, we are playing a “wait and see” game.  yes, we want Matthew to be extubated, but we’d rather the doctors took their time and it was done when Matthew is ready, so he doesn’t have to be intubated again.

His protein levels were dropping again, and Nephrology have suggested he may have a problem with his gut, so he’s off the breast milk,while we wait for a consult with the people that deal with the intestines.

All in all, a good day for Matthew – he’s down to 25% Oxygen (he’s been around 30% for the last week), so while not “room air” he’s heading slowly in the right direction.

Matthew passed the 100 days old mark yesterday.  To celebrate, Jen and I had a meal out and got Matthew a few toys – one of which, Sophie Giraffe – you can see in the pictures.  Matthew seems to like Sophie, as today he did spend a bit of time tracking her around while smiling.

In general, Matthew has been behaving himself this week.  The doctors have been taking his weaning slowly, and only changing minimal things each day.  Since my last blog, his ventilator settings have hardly changed (you can see how well he is doing in the photo’s), and he has lost a bit of weight – last night he lost 100 grammes from the previous day when they weighed him.

The big thing that happened to Matthew this week, was he had a “Care Conference” – this was meant to have happened a few weeks ago, but it happened on Wednesday.  In it, we discussed Matthew and the progress he has made, and made a plan on how to continue his care.  This is important for us, so that as the doctors and neonatologists change on the rotations, we get some level of consistency in care.  Following the conference, in which all of Matthews problems were discussed (he has a lot!) they decided to see if his chylothorax has resolved, so last night, he was restarted on a ixture of his formula feed (lipistart) and EBM (expressed breast milk).  Matthew seems to have responded well to this.

Today (Friday), a few more things that were discussed at the Care Conference were done – his PICC line was replaced (for a larger one), and a new arterial line was inserted.  This was done under ultrasound guidance, so Matthew had a magical mystery tour of the BC Children’s hospital to get to Radiology for this to be done.  He has recovered well, and was wide awake, smiling and happy.  He was sleeping when I left him.

Matthew has suffered a small blip on his road to extubation.

Last night, his breathing was a little too fast for everyone’s liking, and so a chest x-ray was performed.  They think it could be just fluid on the lungs, which means we have to start again with the physio, and plodding along slowly again.  His ventilator settings were tweaked to make it easier for him to breathe, but no extubation this week 

Matthew has been making good strides over the last few days with his breathing, that he is now on minimal breathing support, with the plan that on Monday they will switch him back onto the CPAP mode of the ventilator (where he does all the breathing with the only support being they give him a little boost on every breath he takes).  Once on CPAP mode, he’ll probably remain on the ventilator we think for a few more days, before he is extubated.

This is of course, conjecture.  Last time we were at this stage, he got ill, so they weren’t able to extubate him after all.We will just wait to see how this week goes.

Because Matthew, while he is stable and seems to be improving, is still very susceptible to picking up infections, they are now considering moving him to an isolation unit for his protection.  But whether this happens soon, or after the MRSA quarantine is lifted, we don’t know, if it happens at all.

Matthew has been out for a cuddle with both Jen & myself this weekend, and for me, he was wide awake the whole time listening to some lullaby versions of The Beatles!  He’s currently listening to some lullaby version of Queen hits, while he is getting a cuddle from Jen.

We lost the arterial line today, so it’s back to being poked in the heel for any blood work that needs doing, but they’ve promised to minimize that work.  His MRSA swabs have come back negative, so his PICC line may be replaced this coming week.

Will the fun never end?

We’re currently in an MRSA Cohort Isoloation in the NICU ward that Matthew is in.  One of the babies that recently arrived has tested positive for MRSA (sorry, don’t know the strain), and as a result, all babies that have come into contact – by virtue of being in the same room – are now in a lockdown.  No new babies are allowed in, no babies allowed to go out.  One of the other babies was due to be discharged, but because they had been in the same room were moved back in, and now can’t be discharged until all babies have been swabbed and tested negative for MRSA over a one or two week period.

So, Matthew is in a room with 6 other babies (normally there would be up to 11 other babies in the room as well) for the next week or more.  Matthew is taking this in his stride – so far he hasn’t put his hand up and asked whether he can have it too.

Overall, Matthew’s last couple of days have been pretty good, other than he hasn’t been sleeping very much.  They’ve hooked him up to a brain monitor machine as a precaution – but he seems pretty happy to me, except when he’s crying as he has a high temperature.  When I left him, he’d just been turned on his tummy, and he was – finally – asleep.

What a difference one day makes to Matthew.

Friday he was OK, Friday night he did not appear to be “himself” according to his nurse, so blood cultures were done.  Saturday he was OK, but kept having small episodes where he would forget to breathe, and by night he was not very well at all.

After just 15 hours, the blook culture taken from him came back positive, so he was immediately started on antibiotics, and due to the potential nature of the bug, he had to have a lumbar puncture done to see if the bacteria was a meningococcal.  Fortunately,  the results for that came back negative.  But he does have the same bug that was found on him the other week that caused the terminal clean.  What is important here is that after 90 days, this is the FIRST positive blood culture that Matthew has had.

By Sunday he was very sick – I spent most of Saturday night up with him, as we was given bicarbonate to sort out an acid issue in his blood, saline solution to raise him blood pressure, hydrocortisone, and numerous other drugs,and his urine output was virtually nil.  This all had the effect that by Sunday midday, Matthew was no longer the svelte baby he was on Friday, but weighed in at 3.4kg, a gain of 300gm in just two days.

But by Labour Day, he had started peeing again – so much so, that on Monday, he has put out more that 200ml more that he took in fluids.  And this morning, by 11am he had already peed about 230ml (he needs around 180ml to maintain a neutral intake), plus a complete bed change because his nappy (diaper) was so full it spilled out on to the bed!  The last couple of hours, he’s been averaging about 25-30ml of urine alone!

The antibiotics definitely seem to be working, when he goes to sleep his heart rate drops to the 140’s, where it used to be.  His breathing was compromised – they feel that the reason that he had the brady episodes was that his body was working so hard on the limited calories he gets to fend off the infection, that he had no energy left for breathing.  So, he’s back on the traditional ventilator settings, and back to settings of around 2 weeks ago.  We have high hopes that he will continue to get better as he is responding well, and be able to lower his ventilator settings again.

It’s been a long time since I posted anything to this site, and there’s a lot for you all to catch up.

After the terminal clean, Matthew started gaining a bit of weight, so the diurectics were upped slightly, and he started to lose some weight again.  Just in time for Jen’s mum to come and visit.  Grandma got her first hold of baby Matthew on the Wednesday – Matthew was stable enough to be held (there is a photo of the 3 generations, baby, mum & grandma!).  I think it was a very special moment for her, being able to hold him – she had held his hand and stroked him, but nothing compares to be able to hold Matthew.

The rest of the week, Jen and I spent quite a bit of time with her family, and taking them up the usual tourist attractions here in Vancouver.  Grouse Mountain, the aquarium, Stanley Park – it was good to get out of the hospital environment for a short while.

The weekend was pretty much status quo – they just tweaked his feeds and fluids to manage his calorie intake and fluid management.  On Tuesday I drove back to Kelowna, taking all the luggage, and Jen and her family flew back a few hours later.

It was strange for Jen being back I expect.  At least I had been able to get away a couple of times, if only for a day or two, so for Jen to be back after 3 months away, it must have felt familiar yet strange.  The cats recognised her, and played with her, and were very affectionate towards us all.

Of course, having a 1-800 number we can dial in and speak to our nurse helped us keep track of what Matthew was doing, and for the first day or so it was always the same “wide awake, happy, looking around”.  Then suddenly it was “we\ve decreased his ventilator breathing rate to 35 from 40”, then it was redcued to 30, to 25, to 15 and last night, when I called in, it was 0.  Don’t worry – this is a good thing!  This means that they had managed to change Matthew’s ventilator settings to such a point that he was taking every breath himself.  They were going to monitor him, and make sure he didn’t get tired out.

Before I left to come back to Vancouver today, I called in, and his nurse said that Matthew was still on the 0 breath rate – but was doing anywhere from 25 to 60 of his own breaths himself, and was on room air!  I was in shock.

When I got back to the hospital, the first thing I did was go and see Matthew.  He was breathing for himself, and was on 24% O2, he had to have a little as he was just recovering from a slight temperature.  But he was wide awake, happy and looking around.  I even got to hold him for nearly 2 hours this afternoon, and while he was in my arms, he was wide awake, looking at me – it was so special.  I read to him, and he fell asleep, and then apparently I nodded off, and the nurse couldn’t find a camera to take a picture of us, but she said we looked very cute!  The whole time, Matthew was in about 25% O2, and was breathing for himself.  Towards the end, he started to get a little unsettled, so he was put back in his bed, and he started to settle down.

One of the things that a lot of new-botns who have difficulty breathing, is remembering to breathe.  Breathing is something we all do and take for granted, but for a baby it’s something they have to “learn” to do.  There is a drug that new-borns are given to help them remember.  Chances are that you’ve already had some of this drug yourself today – it’s caffeine.  Matthew has not been given this drug, which is a good thing – it means he’s pretty much learned that he needs to breathe and doesn’t need to be reminded – another piece of good news.

Matthew now weighs 3.01kg, and while he still a little puffy, is being to look like a real baby should, and is starting to stretch out his arms and legs now – which is so nice to see after such a long time of him not really moving at all.  The calories that they are giving him seem now to be definitely having a positive effect on him, and he is getting stronger every day.

I spoke to one of the RTs who has been looking after Matthew, and when I spoke to her, they were saying that for Matthew to be extubated (removing the  tube), he needed to be on a “PEEP” of 5 or 6, and pressure support of 10 or lower.  While Matthew was on me, they had to lower his pressure support from 10 to 8, and his PEEP was on 7.  They are hoping that after the weekend and Labour Day (when staffing is generally lower) that they would consider extubating him – and he will then go on “CPAP” and have the nasal prongs and/or a mask, only because he has been on a ventiliator for 87 days so far, but they don’t think that he would need that for very long.

So next week could be a very big week for Matthew – we hope and pray that he can be extubated, and welcome all your thoughts and prayers for him as we approach this day.  Of course, as soon as this happens, there will be pictures and I’ll let you all know!

And did I mention that Matthew was classified as a “yellow” baby last week, and has remained a yellow baby?  Another piece of good news – he’s no longer the sickest baby in the NICU!