27/9/07

Elis had continued to do well over the weekend and had a really good day on Monday, even giving a good performance for the physiotherapists (photos to follow) but has given us a run for our money again over the last couple of days.

On Tuesday morning a blood test showed that his infection markers were up again. Although he was still clinically well, the consultant started him on an oral antibiotic whilst samples were taken for analysis to identify the cause and location of the infection. We then had a phonecall at 2.30 in the morning yesterday to say that he wasn't very well and would we like to go in. What a nightmare all over again.

Elis had gone from being fine at the beginning of the evening to going downhill within an hour, needing more oxygen and then being bagged, really labouring to breathe and his temperature was very unstable. By the time Glyn and I arrived at 3.20am, he was back in an incubator on CPAP and had been given IV fluids. The consultant on call had been contacted, and emergency chest Xray taken and more IV antibiotics prescribed. The fear was that he had gone down so very fast and they didn't know how bad he was going to get. Thankfully the Xray showed no evidence of a pneumothorax and he seemed to stabilise over night with his oxygen requirements coming down from 100% to 53% by morning.

By the time the consultant and doctors came for Ward Rounds, Elis had become alert enough to realise that he had the nasal assembly stuck to his nose again and was starving hungry and he was seriously unhappy about it. The first thing the consultant said was to try him back on low-flow and feed him!! Sure enough, he settled again once on low-flow and his oxygen requirements went down from 1 litre to 0.6 almost immediately. After rounds were finished, he then breastfed like he hadn't been fed for a week and was then content again.

Early indications from microbiology are that he has a urinary tract infection, so hopefully his lungs have been spared this time but we should get more results back today and can then amend his antibiotics accordingly.

Tests during the week had shown that Elis has become steroid dependant following this latest course of Dexamethazone, and even with the Dex that he is being given, his steroid levels are lower than the body should naturally make. A specialist Endochrinologist has been consulted to find out how they can now ween him off and boost his system into making its own steroids again, and the plan had been to slowly change the Dex to Hydrocortizone (in a dose that needs to be specially made for him and sent to the hospital) and then gradually reduce the dose. However, with this latest infection, his base levels of steroid are so low that it makes it very difficult to fight any illness. As a result, Elis was started on the Hydrocortizone yesterday at three times the normal dose, in addition to the Dex. We'll worry about the longer-term effects later.

Anyway, he got through the day without further incident but was really cranky again by the evening. He seems to be enjoying his new 'Rainforest Soother' which plays music and has lights and moving parts to watch and is absolutely fascinated by his reflection in a mirror.

It certainly wasn't how we had planned to celebrate his 100 day birthday - mum had even made a birthday cake for the staff in accordance with tradition (allegedly), but at least he had a chance to enjoy his birthday presents!