The trains are back running again and I am getting close to Hamburg on one of those really fast trains, a bit like BMWs on rails.

When I arrive I’ll get the S1 (so many of you know this German ‘DART’ from your visits) which should give me about an hour in the hospital.

It was strange yesterday to ring the ward rather than to visit Pádraig. And the whole ‘last train out of Hamburg’ business was a bit stressful. Then – to talk to Pádraig’s nurse and a doctor, rather than to see him and talk to him. Not to be able to ask all the questions I wanted to ask. To probe the assessment they gave, to question the need for oxygen or suctioning. There is this nagging feeling that Pádraig maybe did not really need it. That, maybe, it was a very careful and cautious night nurse who, maybe, did not know Pádraig terribly well and decided that the easiest and safest way to deal with a low oxygen level they observed on their monitors (maybe caused by a cough they were not aware of because they are not in the room with him) was to give him oxygen. For several hours.

When Pat got back to Hamburg this morning, she went to see Pádraig and the same thing as yesterday had happened again. His oxygen levels had dropped early in the morning and they had put him on additional oxygen. Dr O’Byrne  took him off the oxygen and, not to our surprise, Pádraig managed fine. The oxygen levels went down when he coughed, but went up again after 2-3 minutes. Not a bother.

He has not been on oxygen for months now, and we don’t want to go back. We want to go forward and Pádraig is ready for it. When we are there with him, for whatever reason he does not need oxygen, nor does he need suctioning – all of which reinforces our decision to continue with Pádraig’s treatment in a different environment, in an apartment here in Hamburg, one we still will need to find. (We just need to get through to the person-‘zuständig’.)

Several doctors here told me that Pádraig will need and get 24 hour care in our apartment, given that he has a tracheostomy. When l asked an expert in the field what that means in terms of people, he said “around 5.3 full time carers”. You need that many people to provide 24 hour care, 7 days a week, including holidays and sick days and other out-time. I was surprised. On top of that, he will need and get several hours of therapy. And we will be there, of course.

Finally, a bit of good news: We finally got the head support for the lifter cloth we had enquired about a number of times, for quite some time. When Pat asked one of the therapists about it again today, it didn’t take long for them to find it and leave it with her. It just shows that if you keep at something, you will eventually encounter a person who will make an effort and help.