Right here waiting

Two days later and what has happened now then. Well Danny is starting to finally come down off all of the drugs that he has been on and today, finally, he is able to focus on me when I look at him.  At last he looks like a little baby again. Yesterday the surgeons decided to resume his feeds again after giving him time to allow his tummy to go down and generally give him a break.  They started him off yesterday at 5ml per hour which has now been increased to 7ml per hour.  Today he has been really settled but now that he is starting to become more aware as there are not so many drugs running round him he has been trying to take his ventilator tube out.  Not such a good thing as we were told that he needs this at the moment until they sort out about his tracheotomy, but once again this was contradicted when Julie was told today by a consultant that they planned to extubate Danny later this week.  Julie told them that she didn’t want them to do this as they were “setting him up to fail” as they had told us he could not cope without a tracheotomy, we are led to believe that this is down to the fact that he now has chronic lung disease and his abnormal windpipe.  They also do not have a CPAP machine that is suitable for him. Thus he would be put through the stress of being extubated, struggling to breathe on CPAP and then have to go through the stress of being re-ventilated. This also came as quite a shock as we were told that he would remain ventilated until his transfer to GOS which would be happening this week.  Now however Julie was told by one of the consultants that GOS were reluctant to accept Daniel until they had the CT scans and the bronchostomy results and that it would take until mid-November for a operating space to become available to perform the tracheotomy. The problem is that if he remains on the ventilator he will struggle to get off it even moreso.  Once again contradictions have come into play as the consultant told Julie that Daniel’s problems were down to his severe diaphragmatic hernia; problem one being the kink in his stomach, this we were told by the surgeon was due to the stomach becoming attached to the patch.  However the surgeon had told us previously that he tested Danny’s stomach to see that it flowed correctly before closing him up and he said it did.  The second problem being his slow gastric emptying, this Julie was told again was down to his stomach being in his chest because of his hernia but again this contradicts what we were told previously as his stomach had been tested by the surgeon.  After doing some research of our own we have since found that this can also be a complication of surgery.  We were also told by the consultant on ward rounds at the weekend that his CT showed his trachea ending in a three way split which was something “she had not seen before”, however today Julie was told by another consultant that this was not unheard of and people form in different ways.  I mean for pity sake please just make up your minds, the constant contradiction is not only annoying but it breeds distrust.  What did come out of Julie’s meeting was that she finally got off her chest all that she has wanted to say for a great many weeks but has just not come out and said for the sake of Daniel.  But today just brought her to the end of her tether as Daniel to us seems to be worse now than when he was first born.  Although I have to say that having been on the receiving end of one of her outbursts and knowing her like I do I am amazed that she has held her tongue for so long but then there’s only so far you can push someone before they break.  The way that the meeting ended was that Julie told him in no uncertain terms that Daniel would not be going to the Queens, yes that again, and if he was not going to GOS then arrangements should be made for him to go to Kings College as they simply do not have the expertise here at Nottingham to deal with Daniel’s various conditions.  The greatest fear is this distinct lack of experience and knowledge could well end up costing Daniel his long term health or much worse. The consultant asked Julie if she wanted him to contact the professor in London, to which she said no as we have his number and would contact him ourselves.  This evening we contacted the professor and discussed today’s events with him and explained what we had been told about GOS’s reluctance to get involved at this stage.  We also explained about the delays for Danny to have the surgery at GOS.  He told us that he was going to speak with GOS in the morning and then call us back to discuss this further.  Let us hope that the professor can get things moving as no-one else seems to be getting anything done, the main thing that strikes me at the moment is that people seem to be too busy attributing blame for what has been happening when all we are concerned about is getting our son healthy and home and finally reuniting our family. The bottom line is we are not interested in who did what, where and when…..we just want our boy well and home.