Month: February 2003

Firstly my apologies for not writing for such a long time. I hope you have all assumed that no news is good news!

Last time I wrote Max had been taken off the ventilator and put on CPAP. He has been doing very well on this and last Tuesday came off CPAP for 40 minutes before getting too tired and being put back on. On the Wednesday he came off for 5 hours before he was put back on and on Thursday he was off CPAP for a full 15 hours!!!! What a star!!

Unfortunately he has a lot of secretions (saliva etc) which build up in his mouth, nose and throat, some of which are to be expected due to the trachy, and which make his breathing terribly difficult and cause his oxygen saturation levels to drop. The nurses have been suctioning him every few hours or so, but the doctors have decided to keep him on CPAP where they can give him humidity in order to ensure that these secretions do not settle and cause more problems. If it wasn’t for these secretions he would be breathing perfectly well without any assistance. So that in itself is good news.
Continue reading “CPAP weaning”

The news from the hospital is very positive. On Friday morning we had an appointment to see the doctor who has been looking after Massimo over the last 2 weeks. She wanted a chat with us as she was handing over to another doctor for the next 2 weeks.

She said that the ENT Paediatric consultant is not planning to have a “good look” at Max’s windpipe until he is about 3 months – this is to give him time to grow and get stronger. Until that happens we will not have a complete understanding of what is causing the narrowing in the trachea. She repeated that the ENT consultant expects the tracheostomy to remain in place till Max’s first birthday, we have read on the internet that often these ops aren’t done on children before the 2nd birthday, so that is what we are expecting really.
Continue reading “Chat with Doctor”

Yesterday Massimo went into theatre to have his trachy tube changed (this will happen weekly or monthly from now on – but they like to get the ENT surgeon to do the first change in controlled circumstances!). He now has a variable tube which they have adjusted (actually shortened would be more accurate – twice) but which fits much better than the one they put in last week.
Continue reading “Theatre again”

Just a quick update to let you know that I didn’t get my cuddle yesterday but am hoping to get one tomorrow, however Massimo is VERY happy indeed in his new heated cot and is waking up nicely. The doctors said it would take some time for all the drugs to work their way out of his body, but he moves a little more every day. He is beginning to really grip when you give him your finger to hold and he seems to respond to my voice and touch as well as J’s voice and touch, which is very satisfying. All in all, the progress is good. What the future will hold, we don’t know as yet, but for the moment every step forward is a positive thing. I am attaching a picture of the little chap in his new bed with tracheostomy in place. As you can see the ventilator (big clear tube going to his neck, with 2 blue and one clear tube coming off it) looks quite daunting but once he learns to breathe on his own this will go and he will be left with a small plastic circle round the hole in his neck – still not nice but necessary.

Fingers crossed that he continues to improve

Sorry it has been so long since my last update, but we seemed to have been really busy and by the time I was ready to send an update it was gone 6pm on Friday and most of you will have left work for the weekend, so I decided to postpone.

Since Wednesday and Massimo’s trachy being put in his breathing has been much, much better. He has no more chest drains or tubes of any sort other than a feeding tube up his nose (!) and a central line into his foot although he has various probes here and there measuring all sorts of things which means that there is less medical stuff all round him and is much nicer/less scary to look at now. Of course he is still on the ventilator which is attached to his neck rather than his mouth.
Continue reading “Much better”

Things have not, unfortunately been straightforward in the last 24 hours.

We were woken at 2am by the Neonatal Unit asking us to come in as they were going to perform the tracheostomy on Max as a matter of urgency. When we got there the ENT surgeon was there and discussing things with the various doctors and nurses and they decided that their primary concern wasn’t the tube in his throat, as it was in the correct position, but the fact that the hole in his lungs was seeping air into his body and that the drains were failing to get rid of it. They inserted a new drain and got it draining some of the air, but his breathing was still not settling well. He seemed stable so we left at around 4.30 am. We came home and tried to sleep only to be woken at 6 am asking us to go in to talk to the doctors. The decision was made to perform the tracheotomy as his breathing was too unstable to maintain properly.
Continue reading “Up & down”

Since I posted all the news this morning, and emailed all and sundry the situation has changed, and for the BETTER!

This afternoon, when I went to the hospital I was told that the ENT consultant was coming to see Max at 5pm and that they would operate. Well, I nearly fainted! J had been to see him earlier in the day, and been told that the ENT consultant would be there tomorrow, so in anticipation, J went off to get some work done so he and I could spend the day at the hospital tomorrow, so I had to call him back.
Continue reading “Better news”

Massimo (Max) David Hope-Mason …. was born on Friday 31st January 2003 at 9.55 am weighing 1.556 kilos (3 lbs 6 oz) – his gestational age was 32 weeks and 2 day – so 8 weeks early. He is in St George’s neonatal unit, which is the best in the South East and is being well looked after.
Continue reading “New Arrival”