Toby needed a rest today; he dropped his sats and had a few significant braddy’s so the Doctor decided to put him back on the ventilator. After scaring mummy and daddy a bit, we were allowed to see him and he’s was really looking more peaceful, his feeds were stopped for a little while to give him a break but by the end of the day he was back on 2ml and tolerating it well. He now has 2 new peripheral lines in, one in his hand and one in his foot.
Bit of a rough day for Toby today, his oxygen saturation levels were constantly up and down, his Dr was not sure if he had an infection but decided not to give antibiotics and put up the pressures on his ventilation instead. He is having 4.5ml of mummy’s milk every hour and had another peripheral line put in his right ankle as the previous one fell out.
Still having a bit of a tough run, through the night the doctors decided to start antibiotics as he had some really dramatic de-saturations. His ventilator settings were turned up again and he needs around 50% Oxygen. He had another chest x-ray this morning and His Doctor says that he has chronic lung disease and started him on lasix again. Maybe starting him on a steroid for his lungs over the next few days but at the moment the doctor is happy to wait and see if he becomes more stable. He is now having 5mls of mummy’s milk and is so far tolerating that well. By the end of the night Toby was put on the High Frequency Oscillating ventilator, as he was having some more pretty serious swings with his sats, and having trouble picking himself back up. After starting the new ventilation he became a lot more stable and mummy and daddy were able to go and sleep much better.
Much better today, although in the morning Toby seemed to be struggling a bit, but it turned out that he had wriggled his endo tracheal tube up by a centimeter and once it was re taped in place he was much better. He spent a lot of the day in air or 22 -23% oxygen, so he’s been much better. Uncle Brian and Aunt Pattie came to visit today and were very surprised at just how little baby Toby is.
After a really good night where the nurses were able to turn down Toby’s ventilator settings 2 times and he spent around 8 hours in air, Toby had a few large de-saturations in the morning. This prompted his Doctor to start him on Steroids for his lungs. He explained that they won’t work straight away but hopefully over the next few days they may make a difference in the swings in Toby’s oxygen saturations. He also explained that steroid use can increase the chances of Toby having some developmental issues as he grows older etc, but as he is getting closer to 4 weeks old then the risks are not quite as high. But Toby really does need to have them, as the Doctors have been playing with the idea for a few days, but because of the risks they wanted to wait just that bit longer.
Brian and Rachael came down to visit today and they will be giving daddy a ride home tomorrow.
Daddy went home this afternoon so that he can go back to work; he will be down again in 6 sleeps. Toby had a good day, his sats were still swinging but not as bad as they have been, and mummy is really hoping that he is starting to get better. Weigh night tonight so we are all anxious to see how much he has grown. He is still having 5mls of mummy’s milk and continues to tolerate it well.