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.
Massimo’s birth weight was 1.556 kg (3lb 7oz) and currently it is 1.922 kg (4lb 4oz), his intake of milk has increased from 2mls per hour after his trachy change all the way up to 12 mls per hour, then 25 mls every 2 hours, and now he is on 43 mls every 3 hours. Unfortunately I am struggling to keep up production and for the past couple of days he has been getting 1/4 SMA and 3/4 my milk. Over the weekend I had the joy and delight of getting mastitis on my right side which certainly didn’t help matters. A course of antibiotics and some remedial measures have eased this considerably and am hoping to be back to normal soon!
The bad news is that these secretions that Massimo seems to accumulate in large quantities shouldn’t really be there quite like that and this indicates that Massimo is not swallowing at all. The reason for his lack of swallowing is unknown. The act of swallowing is one that is learnt in the womb as the baby (should) swallow amniotic fluid. The ENT surgeon and his team are consulting each other as well as specialists in the field from Great Ormond Street to decide what the best next step is in order to investigate this further difficulty. Of course Max couldn’t have a simple problem that they have all dealt with before, he had to have a rare one, however this seems to be the way things have been so far and I don’t see why they won’t continue in this vein!
For now he is still in his heated cot, he is breathing well and he is very stable except of course when he has his moments when his saturation levels drop! Until these desat moments are solved he will remain in the intensive care nursery. So in the meantime we hope that he just keeps putting on weight and getting stronger and healthier so that when they do need to do what they need to do he will have the greatest chance of tolerating whatever the procedure is.
Max has had lots and lots of visitors, he is happy to have more if people wish to come and visit, however there obviously has to be a limit to the number of people on any one day. Visits during the week, during the day are the easiest, and the least crowded so please try to come then, otherwise some visiting in the evening between 6pm and 8pm are feasible, as are visits at the weekend. Please bear in mind that only 2 people are allowed around the cot at any one time and that this is an intensive care unit. If you would like to come and visit, please email me rather than phoning.