Month: August 2003

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”

… we were getting used to things as they currently stand, today we discovered another problem. Luckily this time it is a very common one and simply fixed with a small op. Massimo has a hernia, which is apparently quite common in pre-term babies. A quick op, another scar and another general anaesthetic to be organised as soon as possible.

Today we had an appointment with the geneticist so that she can work out whether Massimo’s various problems are linked in any way. The upshot of the meeting, other than spotting the hernia, is that she needs to do some thinking and analysing but the likelihood is that Massimo has just been very, very unlucky. Obviously this isn’t a firm conclusion quite yet.

Other news is that Max is now 6.7 kgs (14lbs 12oz), a rough estimate of his height is 60 cms (we bought a height chart – dolly the dalmatian – and I just laid him on there!). He has started grabbing things and bringing them to his mouth although his favourite activity is dribbling lots and then smearing it all over his face!

Justin and I have been having continuous arguments about the name of this site as I have always disliked “Massimo’s Progress”. For some reason it reminded me of Lorenzo’s Oil. Today I have finally insisted on changing the name to Massimo’s Story. I/we would like your opinions on the matter although we do not promise to heed to any suggestions!

Today was another chemo day or as we now like to call it, an MOT day. Helen and I have dubbed it an MOT day because so many checks happen on the same day: change of trachy tube, re-dressing of hickman line, dose of chemo and/or flushing of hickman line, checking of gastrostomy site (today we cleaned it too!), check over by paediatrician, flexible bronchoscopy (camera down trachy to see how the tumour is growing in the windpipe), blood tests. As you can imagine this all takes quite a long time but unlike last week, this week we were home by 3.30 pm, so a long day but shorter than last week. Next week is a GOS chemo day and along with all the above we will also be having a CT scan to check his shunt is correctly positioned and working. I have a feeling that next week will be a very, very long day! Continue reading “MOT day”