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Well yesterday was certainly a busy day for little Danny. The Ear Nose and Throat (ENT)  specialist came to see us to let us know what he found from his examination that he did on Friday and what he wanted to see happen next.  He told us that they believe that Danny has Tracheomalacia (I think this was what it was, the link described what he said), and that they need to first perform a CAT scan and then to perform a full examination using dye and video cameras.  The CAT scan is scheduled to happen on Monday here at the City but in order to do the other examination it would have to be done at the Queens which has been provisionally scheduled for Tuesday afternoon. This in itself poses it’s own problems, both with the care that Danny got last time he was there and also our own experiences over the years.  He went on to explain the Danny would be under Paediatric Intensive Care Unit (PICU) which is different to the Neonatal unit.  He also explain that once he had done this the results would be sent over to Great Ormond Street Hospital (GOSH) for them to review.  The most likely outcome, we were told, would be that he would require a Tracheotomy and positive pressure would be applied through this for the next 1-2 years, in that time his airway would become more rigid naturally.  If this wasn’t the case then he would have to be referred to GOSH for treatment there.  He said that he feels that the balloon having been inserted into this area could be responsible for making it so large and floppy and also he does not know whether the balloon may have damaged his Larynx which could be causing his reflux to go into his lungs.  All of which are speculation at this time but it seems like once again the balloon, the one that gave him life, is being blamed again.  Since this meeting we have thought long and hard and discussed it with certain people as to what we should do.  We have decided that the best thing will be to have his CAT scan done here and then for him to transferred to GOSH as it just seems to us that it is inevitable that he will end up there as his problems are so very unique.  So that’s where were at, from a family perspective it is going to be very hard as I will not be able to stay there because of work which will mean that the only time that both Tomas, Julie and myself will be together will be for a short period over the weekend but this is for Danny so he can get the best treatment possible and hopefully get him home sooner.  The other advantage for him being at GOSH is that it is so much closer to the professor at Kings College Hospital and, having spoke to the professor about the possibility, it will be much easier for him to liaise.  So now we have to wait and see when the transfer is arranged for but rest assured we’ll keep you posted.

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