Massimo's story

Yesterday Massimo had another bronchoscopy, this time under sedation rather than under general anaesthetic because the doctors wanted to look at his lungs whilst he was breathing spontaneously (under general anaesthetic he would be on the ventilator). They did actually see something that explains all these blue episodes that he has been having. The lower part of his trachea, beyond his trachy tube, appears squashed. We are assuming that this is the tumour on the outside of his trachea which is putting pressure above and below the trachea. When Massimo cries really hard or panics for any reason, the trachea collapses totally closing off his lungs and therefore turning him quite blue. The long term solution is to get rid of the tumour, which the chemotherapy is doing, albeit slowly. The short term solution, to get us through the next few months whilst the chemo is doing its bit, is to insert a longer tracheostomy tube to hold the trachea open. The plan is to insert a variable length tracheostomy tube as soon as they can get hold of the right one and see how he copes with it and whether or not it is a viable solution. If all goes well, then they will have to order specially made ones that are the right length for him.

The bad news is that as long as he has the variable tracheostomy, he will not be allowed to come home. It is likely that Massimo will stay in hospital for the next month or so.

September 21st dawned bright and sunny and Verna (the night before) and Lizzy, Tommy, Zoë, Dom (during the day) all looked after Massimo so that I could look my best and put the honour into matron of honour. The day went off without a hitch and I’m sure you will all agree that the bride looked absolutely magnificent. Proceedings ended at some early hour of Monday morning and we were grateful for Verna’s presence again that night.
Continue reading “One Wedding, Two Emergency Trachy Changes and other shennanigans”

Massimo is finally home again although we did have a couple of ups and downs first, of course!

Since Tuesday, he has been on Pinckney Ward in SGH and he has had a nurse to look after him, and only him, the whole time he has been there. This has really helped Justin and I as we have been able to leave him with a clear conscience and a happy heart. In the meantime we have caught up on as much sleep as we could! Massimo’s antibiotics were supposed to be for 10 days and therefore should have continued until today, however yesterday they decided to stop the course – I suspect they did a blood test and found the infection had gone, but I’m not sure. So whilst I was at the rehearsal for Lisa and Phil’s wedding the ward called to tell us we could go and pick him up! I did mention that we were a tad tied up and that we could go and get him at around 6 pm as we had a wedding party (I am matron of honour) lunch.
Continue reading “Home Sweet Home”

I’m sorry it has taken so long for me to get round to updating you all with the goings on in the H-M household. Things here are hectic as usual. Mum is settling in to life on oxygen and using a wheelchair whilst we are getting used to oxygen tubing trailing around the house, oxygen cylinders dotted everywhere and dealing with the intricacies of a wheelchair!

Massimo is doing really well now, but more of that in a minute. Massimo spent a good weekend (last weekend – ie 27th,28th) in Freddy Hewitt ward but his breathing was getting more and more rattly and he seemed to be wheezing more and more. Suctioning of his trachy seemed not to improve things. On Sunday morning I came home when Massimo had his lunchtime nap and Justin went in a little later and stayed with him until the evening. That night SGH had arranged for Massimo to be ‘specialled’, ie have an extra nurse on duty just to look after him and by 7 pm he was asleep, so I did not return that night.
Continue reading “A rather difficult 10 days or so”

Massimo was admitted to PICU today after he stopped breathing and had a seizure on the ward at around 1 pm. Previous to this he had spiked a temperature (39.2ºC, 102ºF). For now we don’t know much more. I will write more later.

We were admitted to Pinckney Ward in the early hours of Thursday morning however due to a bomb scare (thank you to whoever put a lit cigarette where it shouldn’t have been) we were kept in A&E much longer than necessary and were only brought up to our room at 5 am. In the meantime once Massimo was settled I came home for a quick shower, picked up a few bits and updated the site.
Continue reading “Pinckney, GOS and Freddy”

We got all ready for bed, started Massimo’s feed and half way through he started pooing, so we stopped the feed, changed his nappy (there was very little there), settled him down again and started the feed again. Then he pooed again. This time there was even less but this time it HURT. Major crying, major paddy, major loss of colour. We tried everything to settle him again, even a saline nebuliser as his breathing sounded so strained, but nothing helped. So we put him on the monitor and it read 77% for his saturation levels. So we took him to Mum’s room, still attached and gave him some of Mum’s oxygen. The numbers came up immediately – so it had been a good reading! We gave him oxygen for 5 minutes and then tried taking him off again, but the numbers dropped again to 88%, so we called an ambulance and went back to A&E.

Massimo and I are staying at St George’s again. We hope to be home soon.

This morning, after a good night’s sleep, things were looking OK. Then Mum called to say that they were discharging her at 2 pm. Suddenly I needed to get to Boots to give them the prescription for Mum’s oxygen before they would deliver. Even after explaining that with a special needs child it was difficult to get the prescription to them so that they could deliver in time for Mum’s discharge, they wouldn’t budge. Luckily my brother stepped in and offered to go. However, before he even left Massimo decided to have a poo whilst feeding and got very, very distressed. He started looking a little grey and eventually after discussing it with Helen our community nurse we called an ambulance.
Continue reading “A&E Again!”

We had a difficult night at St George’s last night. Massimo’s secretions were copious and therefore made it harder for him to breathe, I found that I was doing nothing more than constant suctioning and I managed a total of about 4 hours sleep. Luckily I knew that Verna was due to come tonight so I didn’t worry about it too much! At 7.45 am I took him off the oxygen and he saturated well(ish) at around 94-95% but this isn’t really Massimo’s normal levels, so I put him back on the oxygen. At 9.05 am I tried again and he saturated well at 96-97%.

I reported this during doctor’s rounds and they said that as long as Massimo stayed off the oxygen and saturated well for the rest of the morning and that his blood gases (checks above all the level of carbon dioxide in the blood) were good then we could go home this afternoon.
Continue reading “Home Again”

We have been home non-stop since July 18th, and by my reckoning that is a full 44 days at home (or 6.25 weeks), an absolute marathon! Unfortunately we broke the trend this morning as we ended up going to A&E by ambulance.

Massimo has had a really sore bottom since last Tuesday and it has been getting worse and worse ever since. We aren’t sure why he has had this nappy rash and although the idea that it might be linked to possible teething is a current favourite there is little evidence of this in his gums!
Continue reading “Back to St Georges!”

After a relatively quiet weekend and a successful shopping trip in Oxford Street with Leanne (all 3 boys stayed at home and played with their toys) trachy change and MOT day loomed this morning. Of course when planning my diary in the weeks running up to this week I set aside Monday as MOT day as usual and planned a few things to do today, so my attempt was to squeeze everything in to one day. In order to do this, I decided to start bright and early this morning and get to SGH by 9 or 9.30 am instead of our usual 10.30 as my first “other” appointment was at 12 noon.

We went and saw Helen first, in her little office, and caught her trying to catch up after a week away. Having settled into our room, Helen joined us to take blood to send off for analysis and to decide on how to plan the day. The doctors rounds had started and everyone looked very busy as though they too were cramming two days into one.
Continue reading “Another bloody trachy change”

(Finally finished!)

It has been over 10 days since our last entry and quite a few things have happened chez the Hope-Masons. After our second visit to GOS on the Tuesday we had a follow-up appointment with Kate Farrer (NNU) and Suzanne Crowley (Paediatric Doctor specialist in Respiratory Problems – I’m sure I will change this description once I’ve checked it with Dr Crowley herself!). As Massimo is so special we were seen last, so that they could catch up with his file and spend time with us, so although our appointment was 9.30 we didn’t get seen till much later. Whilst waiting for our appointment we met Massimo’s Social Worker, a lovely lady by the name of Stella who assured us that she would do her utmost to get us the higher rate of Disability Living Allowance and to make sure that we got a blue badge (what was an orange badge and previously known as a disabled badge). During our appointment Dr Farrer and Dr Crowley saw that Massimo’s breathing wasn’t as brilliant as it should be and although some of his difficult was possibly due to the recent chemo, they decided to try him on ventolin nebuliser to see if this would help but in fact it made little or no difference. His breathing and saturation levels did improve by the weekend, so I think that he was struggling with the chemo. Anyway, we all had a lovely catchup. After our appointment Helen came down to see us and together we decided to redo his Hickman Line dressing so by the time I left SGH it was 1.45 pm!
Continue reading “A new entry at last”

Well today was a far, far more successful day than yesterday! The Parrot Ward organised for transport to come and pick me up at 10 am and the car was here by 9.30. Once we got to the hospital and onto the ward we called Michael from the Elephant Day Care and he and a specialist nurse were down in 10 minutes. Chemo was administered quickly afterwards, whilst the anaesthetist came to talk to me about Massimo and she agreed to change the trachy tube whilst he was under. At about 2.30 pm we took Massimo down to the CT scanner and I cuddled him as he went to sleep. Less than an hour later I was collecting him again. He was very unsettled when he came round, possibly because his throat was hurting and when he got back to the ward he required oxygen for a while. We are, however, back home and I am eternally grateful for Verna’s presence tonight as I like the thought that she will be keeping an eye on his saturation levels (oxygen levels in blood) whilst I get a good night’s rest. Today, on top of yesterday, has been thoroughly exhausting. Good night all!

This afternoon, on returning from our ordeal at GOS, Massimo discovered how to blow raspberries and he has been doing nothing else since, except grin at everyone in sight! When we put him to bed this evening he lay there, eyes wide open, looking around happily and … blowing raspberries! This really is quite an achievement for a little chap with a tracheostomy and therefore very little air in his mouth and no pressure from his lungs!

As you all know, today Massimo was due to go to GOS for the usual MOT day, a double dose of chemo and a CT scan. I had organised for J’s Step-Mum to come with us as it is impossible for me to drive that distance with Massimo on my own and J can’t keep taking days off from work. In the end he didn’t go to work today as he was at the doctors’ in the morning and at St George’s in the afternoon!
Continue reading “Fun and Games at Great Ormond Street Hospital”