Massimo's story

Massimo went in to surgery today at 2.15 pm. We were allowed to go with him to anaesthetics pre-op, I was allowed to carry him and hold him whilst he fell asleep, then we both kissed him and left. It was heartbreaking. No matter how much I know that this is the best thing that can be done for him, it was still very difficult to leave him there. Not surprisingly I was in tears!

We were called to the recovery room about 3 hours later. Although the actual operation only takes about 1 hour, between one thing and another, it always seems to take forever. In Massimo’s case they also decided to suture his tracheostomy just to make sure it didn’t move whilst they were tunnelling for the tubing. (For an explanation about how the shunt works etc please see links on the right.)
Continue reading “The Shunt is done”

J has kept you all very well up to date with what has been going on whilst I have been at SGH with Massimo. This morning he went down for an echo of his heart to double check something that they thought was smaller than it should have been at his last scan but which it was assumed he would grow out of. We thought they were checking on whether his heart had anything to do with his bronchomalacia (ie whether it presses on the lungs in some way). The result is that his heart is perfectly normal.

We thought that we were off to GOS this afternoon, so we hurried to and from the cardiology department which is at the other end of the hospital and came back to be told that we had been bumped off the list in favour of a newborn who is leaking spinal fluid. We were disappointed but the doctors and nurses at SGH really tried to compensate by trying to organise the lasering of his granuloma. This was about 11 am. At 2.00 pm they came to tell me that GOS had called saying that there was a bed and that we could go over any time after 3.00 pm. Transport was organised and due to arrive at 4.00 pm. At 3.00 the ambulance men appeared on the ward. I had asked one of the nurses to call J to tell him that our move to GOS was on again, but when I called in a panic to tell him to get on the tube double quick he had no idea what I was talking about. By the time we were packed up and ready to go with portable suction, oxygen and the little man on a huge big stretcher and got downstairs in the lift, J was waiting for the lift to come up, so fabulous timing. We were taken to GOS in the ambulance, neenars and everything (to quote Zoë), but it wasn’t quite as exciting as the first time as we weren’t really in a rush.

GOS is very smart and Massimo is in a big cot on a ward, with a nurse all to himself. The shunt is scheduled for early afternoon tomorrow, Massimo is third on the list. The surgery will take about an hour and there will be a horse shoe shaped scar on his head and a cut in his abdomen. We have been warned that it will be quite painful for him and that they will be giving him serious pain relief (well, as much as you can give a tiny person!). I have to admit that I had done very little reading about the shunt and I learnt a lot about it this evening. Much of which I find quite difficult to accept, the hardest of which is the fact that the shunt will be there for life.

Tomorrow will be a tough day.

Silvs and Massimo were on Radio 4’s You and Yours today. She was being interviewed with some friends about internet chat rooms as sources of support when trying to get pregnant.

In case you weren’t glued to your radio at the time, you can listen to it again from the you and yours website (near the bottom of the page). They also have a link to listen to just the relevant clip here.

How exciting is that?!

As Max is so much better, he has been transferred back up to the Freddie Hewitt ward. Silvs is therefore going to be spending most of her time in with him. She is therefore back on Patientline, so can be called on 07046 200076 extension 7724. PLEASE call her to relieve the boredom!

We are now waiting for a slew of procedures:

1) Shunt – To sort out his Hydrocephalous
2) Rigid Bronchoscopy – To remove by laser the granuloma in his trachea
3) Microlaryngal bronchoscopy – To investigate the narrowing below his voicebox
4) Gastrostomy – To replace his ng tube (the one in his nose)

At the moment we are hoping that the shunt will be done on Wednesday at GOS, and that he will be transferred across there on Tuesday.

He is booked in to have the gastrostomy on 26th June, when they will hopefully do one or both of the bronchoscopies at the same time – the idea being to keep the number of general anaesthetics to a minimum.

Massimo had a very good night. He got lots and lots of rest. Both the morphine and the sedation helped to ensure that he got all the R&R he needed and he was bright as a button this morning when I went in. They did a chest x-ray to check that the new tracheostomy tube was correctly in place and then I got him out for a cuddle. They had weaned his ventilation down but did not put him onto CPAP until he was in my arms at around 12. Massimo coped with the change very well and although he looked wonderful the monitor was saying that his heart rate was just a little higher than normal.

At 2.30 they took him off CPAP and he is currently on a smidgen of oxygen. He is managing very well although he is working just a tiny bit harder, but nothing more than what I would have said was normal.
Continue reading “A vast improvement”

One thing I forgot to say in my last entry is that Massimo’s oxygen levels kept dropping yesterday, not for long, but he was going a little grey around the edges and the nurse was bagging him and giving him extra oxygen. This is something that happened two or three times which I witnessed, but it shows that our brains absorb more than we actually process until we are ready to accept it and deal with it. This morning when I called the unit they told me that his oxygen requirement had gone up and down during the night and it triggered the memory of yesterday. Also I was told that his breathing had become very bad again. He was recessing (breathing in hard so that his ribs show) really badly and had been most of the morning. The doctors decided to do the bronchoscopy today.
Continue reading “What a horrible, horrible day”

Sorry for the long delay since our last entry but I have been feeling very, very unsettled about Massimo’s stay in hospital, but finding it very hard to pinpoint exactly why I was so unhappy with everything.

A few things did bother me and bothered me more and more as the days have gone by. The first is that they kept taking him off CPAP even though he seemed to be working very hard with his breathing. I couldn’t understand why they appeared to be making things harder for him. I spoke to a very nice doctor today (Jonathan) who explained that as the CPAP did not appear to be helping him, it was better that he wasn’t relying on it otherwise if his breathing got any worse the only way to assist him further would be to put him on a ventilator (rather than just back onto CPAP). He was off CPAP for most of Sunday, Monday and Tuesday but every day, at some point, he would be put back onto it. Also he always seemed to be working very hard. Today he has been on CPAP all day and he had a very long cuddle with me which seems to have helped him to settle down much better. The plan is to leave him on CPAP now until Friday morning and review him then. Obviously if he starts breathing more normally they will try to take him off before then.
Continue reading “An update – finally”

Firstly, please note that he isn’t critical and nothing earth shattering has happened, however both Justin and I feel that he was better yesterday, even after he had been put back on CPAP than he was today when we went in.

At 9 am this morning he was taken off CPAP again and he was still not on CPAP when we went in this afternoon. I went in first and I thought three things when I first saw him: (1) his cradle cap on his forehead was much worse than it was yesterday – this is a very good indication of how he is, regardless of what symptoms he may or may not have (2) he was only wearing a nappy and felt slightly colder than I would have liked and (3) lastly, but most importantly, he was working very hard at his breathing.

The nurse looking after him said that he was very hot this morning and she had stripped him down, which was obviously the right thing to do, but I felt that he had cooled down enough and that with a temperature of 36ºC he could do with just a vest. I’m not entirely sure the nurse was very pleased with me. As the afternoon wore on I think I managed to ruffle her feathers even more but to me Massimo’s wellbeing is and was more important than endearing myself to his nurse.

Anyway, he was put back on CPAP at about 6 pm and it didn’t seem to make any difference at first but J said that he was much more settled by the time he left at around 7.45 pm. I think this will take a few more days to clear up and we must just hope that it doesn’t get any worse first.

Massimo was very settled overnight and the only thing to report is that he managed to remove the canula that was in his foot. A canula is that thing nurses insist on inserting into your vein so that they can have quick and easy access to your blood at all times. Massimo’s was in his foot and all bandaged up and nobody knows how he managed to get it out!

This morning at 9 am Massimo came off CPAP and at around 4 pm they needed a bed in PICU and decided that he could be transferred to one of the other wards. 15 minutes later Massimo started wheezing and working hard at his breathing again so they gave him some Salbutamol nebuliser and put him back on CPAP and decided to keep him where he was.

We went to see him and he was awake for some of the time, although with all this heavy breathing he does get very tired. He is doing really well. I have just spoken to the nurse and he is fast asleep and breathing well, albeit still on CPAP. They will probably try to take him off again in the morning.

Amongst all the shenanigans today, I came down the stairs carrying a tray and stepped on a box that was on the stairs to bring upstairs. I give you the evidence of my pain. (It isn’t a pretty sight!)

Massimo has been referred to a neurosurgeon at Great Ormond Street to review his hydrocephalus. The original letter went some time ago and when we went for our follow up appointment on Tuesday the doctor we saw, Tony Williams, made it his business to chase up a few things, and the lack of response from GOS coupled with Massimo’s new head measurement of 44 cms, put this at the top of his list. He chatted with Kate (NNU doctor who had originally referred him) and between them they discovered that the doctor that Kate had written to is on holiday, so they wrote another letter to another neurosurgeon and faxed it across yesterday.
Continue reading “Great Ormond Street II”

All has been well in the Hope-Mason household since Massimo came home, until last night. A little background first though. On Massimo’s penultimate day at the hospital Helen and I noticed a little granulation (excess skin growth) around his tracheostomy stoma (hole). It was also quite red and sore and a cream was prescribed to help clear it up. This granulation can cause difficulties when doing the routine changing of his tracheostomy tube so we decided it was best to do the change with Helen here. I did the tracheostomy tube change last Friday with Helen (J was at the office) and although it was difficult it wasn’t as straight-forward as it has been. We decided to do this week’s tube change with Helen again and this was planned for yesterday afternoon. When we had a close look at the stoma prior to the change we noticed that the granulation had got worse and that it implied a complications could arise during the tube change. Helen and I made the decision to postpone the change until we could get Massimo seen by one of the ENT team from St George’s (preferably one of the two paediatric ENT guys) and take it from there. So today I was supposed to be going to SGH anyway. Things didn’t quite go as planned of course, Massimo is good at keeping us all on our toes!
Continue reading “Back in PICU”

This morning, Massimo and I spent it at the Children’s Clinic in St George’s Hospital (from now on to be referred to as SGH!). Our appointment was at 9.20 and we left SGH at 12.10.

Massimo passed his hearing test (in both ears) and was weighed (5 kgs, or 11 lbs) and measured (sorry can’t remember!). All well, except his head now measures 44 cms.

The doctor is happy with everything else and will chase up the MLB (micro-laryngo-bronchoscopy) and gastrostomy and the appointment with the neurosurgeon at GOS.

Last night we had our first night of respite care and Verna was an absolute gem. She arrived on the dot of 10.30 pm and looked after Massimo until we wheeled him back into our bedroom at 8 am (I never realised how useful those wheels were going to be!). J and I slept like babies!

Today we met Lisa and Phil at La Rueda restaurant to check it out as a possible venue for Lisa’s hen night. We had a lovely lunch and as the picture shows, Massimo was more than happy to be cuddled by Lisa!

Verna is back again tonight so plenty of zzzzzs in store for us. A good night’s uninterrupted sleep does wonders for the production of milk so maybe I’ll manage to keep it all going for a little while longer.

It has been a while since we have posted any pictures so here are a few. There is Massimo on his Activity Mat and Massimo with Kamila.

Thank you to Aunty Amanda and family for the lovely baby gro and for the attache-sucette (which has been a great success!).

Hope you like them.