Month: September 2003

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!”