Yesterday was 11months post diagnosis.
Mummy didn't have much sleep in ICU with Jeremy last night - he made it through to about 3am when his blood pressure dropped to the point where ICU administered drugs to help stabilise it. Around 6am, more of this drug was given, and he was also given a fluid bolus to support it.
Jeremy must have been quite upset from last nights events, as he was most pleased to see his Baba this morning (not cheeky, just plain happy). The environment in the ICU area is quite stark and a big contrast to the rooms in Camperdown ward. There are windows on most walls - so that the nurse next door can see you! As there is one nurse per patient, if your nurse goes on a break, the other nurse needs to keep an eye on you...
Breakfast was ordered this morning, but the little man was not very hungry - he only ended up eating a few marshmallows before 9am. He was nil-by-mouth (NBM) from 4am Wednesday as he was due to have a general anaesthetic (GA), but then with all the events, he was sick and not hungry. Today, he was NBM from 9am, meaning that he was eligible to go into theatre from 3pm. However, he did not get his turn until after 7pm tonight.
Jeremy had emergency surgery to remove his central line (aka "central venous line", "broviac line", or "hickman line"). This was the source of his infection (they told us it was a gram negative infection today). So we are thankful that it was spotted and the doctors made a swift decision to remove it. We are also thankful that Jeremy has had few issues with the line up until now. We know of others who have not been so fortunate, and had multiple issues. As Jeremy is past the bulk of his treatment, the central line is no longer so important - he will need to get used to having needles each time they need blood samples, and get used to cannulas being inserted.
Apparently the wound site isn't very large, so hopefully it will be healing well by the time Jeremy starts school. Although he might still have his nasogastric tube in at the beginning of term. Jeremy might also be able to go swimming a lot sooner than we thought!
We are also thankful that Camperdown ward is not very busy at the moment. We had been praying for the other children in Camperdown ward, so it was good to hear that the ward was not full, and that many children were able to go home on gate passes. This also meant that they were able to allow us to keep the room downstairs for the time being.
Jeremy came back to ICU quite late, and as expected, was tired and not interested in food. Thankfully, the dietician had arranged for some nasogastric feeds to be available, and Jeremy will get some liquid food into him tonight. Hopefully Jeremy will have a good night tonight, and they will be able to completely wean him off the blood pressure drugs, as that is what brought him to ICU, and would be the thing keeping him there. Once he no longer requires it, he will be able to go back to Camperdown ward to complete his course of antibiotics.