Matty's Blog

Well, unfortunately, not everything went to plan this morning. Don’t worry though, everything’s ok. This morning we got Matty all ready for surgery, and whizzed down to the hospital for a 6:45 checkin. After all the signatures and documentation formalities, Matthew was given a quick checkover and then I took him in to be anesthetised at around 8am.

Matty dressed in his hospital gown all ready to go

He didn’t really enjoy being put under.. i don’t blame him – if you don’t know what’s going on, it must be a terrifying experience. After that, i went to join Pam in the waiting room….

A short while later, Matthew’s surgeon came in to see us. Apparently, when the anesthetist went to intubate Matthew (put a breathing tube down), they noticed a cyst just below his larynx. The problem with that, is that it would mean that it would likely cause complications when the tube was to be removed after the surgery and could quite possibly result in emergency surgery and a tracheostomy. So.. rather than risk it, they deferred the surgery until the Ear Nose and Throat department can go in and deal with the problem.

We had a chat with the ENT specialist a little later (who had a look at the cyst in theatre). The revised plan is now to book Matthew in to have the cyst removed/drained in about a month. About a month after that, when he is all healed up, then he can go in for the ileostomy reversal.

Matthew is still at the hospital with Mum and they’ll stay there for a few hours under observation. He was a pretty cranky little fella when he woke up, complete with IV, drip and monitoring equipment. After a while in the recovery ward, however, he seems to have calmed down and is almost back to his normal cheery self.

So, although the outcome isn’t what we expected from today’s events, it’s still a good outcome and could have been a lot worse.

aj, January 29th, 2010, 1249h | Category: Uncategorized | Comments (1)

Tomorrow morning Matthew is going in for surgery to reverse his ileostomy. This means that tomorrow, we’re trading the ostomy bag for dirty nappies! It’s one more step closer to normality.

The surgery itself is fairly routine, however Matthew will still need to go under a general anesthetic, be put on a ventilator and spend a few days at PMH. Naturally, Mum and myself are pretty nervous, but we know our little man is a tough little fella and will be just fine.

I’ll let you know how it all goes.

aj, January 28th, 2010, 2346h | Category: Uncategorized | Comments (1)

Matthew! His hair has been getting rather long and looking like a mohawk  so we decided it was time for Matthew to get his first haircut. Off we went to the barber (neither of us trusted ourselves with the task) where Matty got to put on a Snoopy themed cape and get his hair cut by a pro.

The 'Before'

Dad got into the barber’s chair and sat Matthew on his lap. Matthew was not very happy with having his hair cut, but at least he was still while the barber was using his scissors. Mum stood next to Matthew and collected a bit of his cut hair in an envelope to keep for his baby book. After it was over, Matthew had a much more handsome hairstyle… don’t you think?

The 'After'

Side view

Pam, December 7th, 2009, 2239h | Category: Uncategorized | Comments (2)

Hi Guys. It’s been a while since i’ve updated, and yep, you guessed it, we’ve been busy.. man have we been busy. Barely a day goes by when we don’t notice some new skill that Matthew’s picked up.

So, where to begin in the recap of the last few months… Well.. lets start at the end and work our way back. Matty passed the one year anniversary of his due date about two weeks ago. He’s now up to about 8.5 kilos and although he’s slowed in his weight gain, he’s still making some progress. He’s doing pretty well with his solids these days, and is keen for a variety of different types of foods. We’ve been trying out all sorts of new flavours and he’s been pretty accepting, all things considered.

MMMm chocolate pudding. Note the inaccuracy with the spoon

Speaking of feeds, a few weeks ago we made the decision to drop his 3am feed. Pam is pretty grateful for the uninterrupted nights sleep these days, and in fact, I think Matty’s happier too. He sleeps all the way through the evening from around 11pm until around 9 to 9:30 every morning.

Matthew had his 1 year corrected developmental followup with neonatal. It’s the kind of visit where he gets to play with a whole heap of toys such as blocks and string and other bits and pieces whilst the doctors watch how he goes. As expected, Matthew’s unfortunately quite behind… but like i said, all things considered he’s doing ok. In fact, it really seems sometimes that Matthew’s mind is way ahead of what his body can handle. You can see he gets frustrated at times, because he really wants to do the next skill before he’s mastered the first one. I guess in that respect he’s like his dad.. bored easily.

At about the same time as Matthew’s 1yr followup, we also switched care from the neonatology dept over to the early intervention clinic. This means that Matthew’s now in the care of a different team of specialists and we get to have big meetings with them all about once every few months. At the end of the last meeting we got a really good overview of Matthew’s skills (as graded by the hospital). Speech therapy is really thrilled with the variety of vocal sounds that Matthew is using. The physio is pretty happy with Matthew’s newly acquired skill of sitting unaided although they do agree that when he does get tired, he tends to throw himself backwards, so it’s important that we’ve always got a soft landing spot for him. The EIC also gave us lots of tips and advice on ways that we can help Matthew progress with his current skills and lead him towards the next steps.

Bathtime!

At Matthew’s last ENT (ear nose and throat) appointment, they expressed some concern about his apneoas that he seems to have (discovered on his sleep study). Whilst the incidents have only been mild, they’ve recommended surgery to remove Matty’s adenoids in January – so it looks like we’ll be spending another night in hospital in the new year. If all goes well with the surgery, it might be a simple day procedure and we’ll get to go home the same day.

Last time we mentioned that Matthew might be coming off oxygen soon. Well, we’ve been completely off oxygen for a few months and although we did have to put him back on for a couple of nights during a small cold, he’s been doing really well without it. We even felt confident enough to send all those oxygen cylinders back to BOC (we did keep a single small cylinder as a security blanket).

Shortly after going off the oxygen, we also weaned ourselves off the pulse oximeter. The only tube that Matthew has left is his NGT (unfortunately, it still looks like that one’s going to hang around for a while longer).

As for Matthew’s stomal surgery, there’s still no plans to do the reversal just yet. In all honesty, it’s working well so if it ain’t broke, there’s no need to fix it (yet).

Matty takes a snooze on a sunday evening after a big day out.

Apart from medical stuff, with the transition of the seasons to spring, we’ve been able to get out a lot more. In fact, in the last few weeks, we’ve done 17km of the Bibbulman Track with Matty, been birdwatching at the Rio Tinto & Birds Australia annual birdwatch and generally gotten out a whole lot more. In fact, we all went out this afternoon for ice cream at the beach

A stop for lunch on the Bibbulman between Mundaring and Kalamunda

So.. That’s Matthew’s progress over the last wee while. All in all, we’ve been pretty busy, and if that wasn’t enough, we’ve decided to fill in our spare time (lol, as if we had any spare time)  with other things such as my new job, selling our appartment and buying a new house. Just before christmas we’ll be moving into a huge 5 bedroom house in the northern suburbs where we’ll have heaps of room for the dog to run around, Matty to crawl and a place for babysitters (read: grandparents) to stay!

aj, November 29th, 2009, 2330h | Category: Uncategorized | Comments (1)

We have been waiting for a really long time around here for Matthew to finally connect all that Physiotherapy work to completing the task of rolling over from back to belly. He finally did it today and even managed to do it 3 times in under 5 minutes! Hopefully with the acquisition of this new skill, Matthew will be able to reach for his toys and develop some of the movements that lead to crawling.

It is pretty incredible that Matthew managed to have the energy to do the rolling over considering he has been suffering from a cold for the last few days. His nose has been running quite bad, but thankfully he has not developed a fever, so it has been nice and mild. He is back on the oxygen at night time just to give him a boost in his oxygen saturations. His numbers on the pulse oximeter were a little low and on the advice of PMH’s Ambulatory Care nurses, we taped the tubes back on his cute little face. This is no easy feat as the little guy squirms so much to avoid the tubes being put on. I am happy to report that is seems like it is clearing up and he is getting better. Hopefully tomorrow night we can turn the oxygen bottle off for good (again).

Matthew’s solid food eating has improved greatly in the last few weeks. He is now taking at least two tablespoons per meal for his three day feeds. His repertoire now includes pureed chicken and corn for his dinner and an apple and blackcurrant jelly for dessert. Keep up the good work Matthew!

Pam, October 4th, 2009, 0036h | Category: Uncategorized | Comments (1)

Matthew has finally done it! No more supplemental oxygen! The results from the sleep study came in and they show that Matthew is able to stay off the oxygen overnight. It did, however, show that he had an episode of his oxygen saturations dropping below 90% which isn’t really a problem unless  he stays there for too long. He stayed under 90% for over a minute, which does concern them, but they know he is fine because he bounced right back to the high 90’s after that minute. We are under instructions to allow Matthew to stay off the oxygen, but at any signs of him staying under 88% (our alarm limit on the pulse-oximeter monitor), to put him back on the oxygen. Last night, he did not alarm once (at least a legitimate alarm – Matthew likes to wriggle until the monitor loses trace and its shows that he has no heart beat – we don’t believe it for one second).

In other news, Matthew is now a big boy of 8kg! He is taking his solid foods very well, now being able to wolf down 2 tablespoons of food at every daytime meal. Like any child he has his favorite food – Heinz Vanilla Custard. We can get him to fit in a few extra spoons after a meal of vegetables or chicken as long as it is that vanilla custard. Sweet tooth, just like his mum!

Pam, September 24th, 2009, 2340h | Category: Uncategorized | Comments (2)

About two weeks before the night of the sleep study, the hospital sent us the admission forms to fill in along with a list of what to bring with your child. One of the items they suggest is a camera to document just how many wires are attached to your child. Thankfully, we took their advice as it was quite a sight to see, but unfortunately, the photos do not do the sight any justice.

Why would you do this to me?

Upon arrival and admission to the ward, Matthew’s head was measured and dots were drawn with marker onto his scalp at particular points where the probes would be attached later. Approximately 20 probes were attached to Matthew from the top of his head all the way down to his big toe. All-in-all, Matthew was very forgiving of all the annoying probes that were now stuck to him. Matthew went to sleep a little earlier than he normally would, which was good because we were not looking forward to waiting until too late in the evening for the testing to begin. All the probes are sensors that measure things like heart rate, air flow in and out of the nose, carbon dioxide in the bloodstream, brain activity and they even measure muscle twitches caused from REM during sleep (rapid eye movement sleep).

Matthew uses wires as a substitute for hair

As I couldn’t sleep for most of the night ( I prefer my own bed), I watched Matthew’s machines. He did sometimes go out of the acceptable limits for him to pass the sleep study, but mostly due to Matthew wriggling too much.

We won’t know if he has passed the test for another fortnight until the results have been reviewed and assessed wholistically. I know that we all want him to pass the test, but we know that Matthew will pass it whenever he is ready. Still, fingers crossed.

Pam, September 10th, 2009, 0030h | Category: Uncategorized | Comments (2)

Well the time has come for Matthew’s sleep study. Tonight, both Matty and Mum will be sleeping at the hospital in the hopes his supplemental oxygen can be turned off at night, finally releasing him from that set of tubes.
It will be at least a fortnight until the results are back, so Matthew will have to remain on the oxygen bottle at night until then. I will give you all an update tomorrow on how both Matthew and I slept, but until then, here is a picture of the handsome little boy taken this morning.

Ready to go to the hospital for my sleep study!

Pam, September 8th, 2009, 1537h | Category: Uncategorized | Comments Off

It seems like most nights we have been hearing that noise. Normally, the noise would be triggered because Matthew was wriggling too much and the pulse oximeter would lose the trace and alarm. Lately, however, Matthew has been alarming for another reason… his heart beat. The alarm limits are set to go off below 70 beats per minute and above 170 beats per minute. When Matthew cries or is very cranky, he can hit a heart rate of 175bpm but the doctors are not really concerned about this. What the would be concerned about is if the alarm was going off because his heart rate was too low. Well, that exactly what has been happening around here.

For a couple of nights now, Matthew’s heart rate keeps dipping to below 70bpm and setting off the alarm. Thankfully, after having an ‘episode’ of this, he is quiet for the rest of the night. On the few occasions Matthew has not woken from the sound of the alarm and Anthony and I have watched the monitor while he dips below 70bpm, it looks like it may still be a trace problem. The lights on the front of the machine are supposed to ‘bounce’ if it has a good reading. It is meant to light-up from the top of the graph to the bottom of the graph to show a good trace, but when it’s a bad trace it can sometimes not show a ‘bounce’ at all. When Anthony and I watch the monitor, it show that it keeps skipping a beat and that may be why it is showing a number lower than 70bpm. We have checked the machine by using a stethoscope to listen to Matthew’s heart and see if it does actually skip a beat too, but it does not appear to be. The hospital cannot do anything at this stage because Matthew is not presenting with anything factual yet. If it was a good trace and showed 70bpm, then we may have a problem, but not just yet. Now, it also may be that Matthew’s heart is just naturally slowing when he is asleep, like in a deep sleep. There really will be no way to know if it is all ok until we have a sleep study.

You may remember on the last blog we mentioned that Matthew has already got a sleep study booked in for early next month. That is very lucky because there can be a three month wait for an available night.

So next week at the sleep study, we will be able to see if it is just our equipment or if Matthew requires medical attention to his heart. At this point in time, we are not too worried as we (doctor’s included) know that the pulse oximeter machines can give false readings and should only be used as a guideline. Hopefully, when the results come back we will be able to tell you two bits of good news – one that his heart is ok, and two that we no longer need the night time supplemental oxygen.

Pam, August 25th, 2009, 1002h | Category: Uncategorized | Comments (1)