Sweet forward momentum

The last four days have seen a few new developments. On Friday the ENT surgeon arrived to discuss Daniel with Julie, I couldn’t be there as I was working. They discussed the possibility of Danny having his tracheostomy performed here in Nottingham either at the Queens or here at the City.  Now we know of this surgeon already as her performed surgery on a friend on mine’s little girl.  They had nothing but good things to say about him so this helped a great deal when he was speaking to us. He said that time is of the essence as Daniel’s development is being hampered by the events over the last 6 weeks which is what Julie had said in her previous meeting with the consultant. He said that he would prefer to perform the procedure over at the Queens due to facilities and trained staff and he was already aware of our issues with the Queens.  He said that he would perform the procedure here at the city if we wished and he said that we should think about it and let us know.  Later that evening and over the weekend we discussed this between ourselves and also with close friends and family. The fact of the matter is that the longer Danny is on the ventilator the harder it is going to be to get him off it, it also will not help with his lung disease.  In the end we decided that while we have very little confidence in the Queens, what we know of this surgeon he is very capable and we have no problem with this.

Over the weekend Danny has been doing really well and while he has got another infection, he has handled it really well with the help of a little anti-biotic’s. His lungs must now be getting better as he has spent an increasing amount of time “in air” which means that he is needing very little oxygen support in his breathing. At times he is binging off at 100% oxygen sats which is so great to see having seen him get so very poorly of late.  He had another lumber puncture today just to make sure that there was no further infection but the initial results were all clear but it will take a couple of days to get the lab results back.

This afternoon saw another meeting between a consultant, surgeon and ourselves at their request to make a plan.  When Julie called me to tell me about this it felt very frustrating as over the last three weeks we have had three meeting with three different consultants and basically told them all the same things about our wishes.  None the less we went along to the meeting in the hope that this meeting would incite some forward motion and we were presently surprised.  We discussed the fact that we were happy for his tracheostomy to be performed by the ENT surgeon that we had seen on Friday and for Danny to be under his care while at the Queens.  We also told them that this was to be a stepping stone to getting him off to London which will probably now be to Kings College where the balloon was first put in. We explained that we felt that Daniel had reached the end of the knowledge which was available at Nottingham and he needs   to be taken to London where there is more expertise available.  They seemed to understand what we were saying and where we were coming from with this.  We also discussed the fact that his ongoing care in the future for lungs will be handle by Queens under the same ENT surgeon we met on Friday.  There also seemed to be some confusion over our feelings towards that care that had been received here at the City in so much as they thought we were unhappy; Julie explained that this was not the case and said that we were “150% happy” with the care Daniel had received while at the City and there was no problems.  The meeting ended saying that they would discuss the tracheostomy being performed with the ENT surgeon and to arrange for the procedure to be performed from there.  They would also enter into discussions the surgeons at Kings College to arrange a referral for Daniel into their care.  So it looks like we may now be making progress and little Danny should be moving forward very soon.

On a slight off note we’d like congratulate Grania & Martin on their new arrival over the weekend. Hope your boy brings you as much joy as what ours have to us.