potter-tate.co.uk

As each day passes this site continues to amaze me in the interest that it has generated in our little boys fight. The site has his some all-time records (for us anyway). This month has seen over 300 unique visitors serving up over 20,000 pages now. Visitors have ranged from Leeds, Leicester, Manchester, Birmingham, London and even a visit from the BBC! So lets continue to spread the word and hope that our experiences help some other family that may find themselves in the same position.

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 (more…)

In the last few days very little has happened with little Danny. He continued to improve with his ventilation as he is now starting to spend time “in air” which basically means he is not having extra oxygen given to him. He still remains on the ventilator as no progress has been made towards him moving to GOS.  On wednesday we were told that the Ear, Nose and Throat (ENT) top man was back and would be coming to see us that evening or yesterday sometime.  However, by the time evening had come (more…)

Sorry I’ve been a little busy the last couple days so thought I woudl just drop a quick message to say I’ll be posting up the latest news later this evening…….ttfn

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 (more…)

Since Thursday’s last posting quite a bit has happened but I didn’t post last night as I wasn’t feeling well so sorry about that.  Anyhow, Friday morning started out with the meeting with the consultant who wanted to discuss what was going to be happening with Danny with regard to the CT scan and GOS. He asked what my understanding was of what was happening with regard to GOS so I explained as far as we were concerned he was being transferred to GOS and that he would be treated from there.  He said that this was not the case and he would simply go down to London to have his tracheotomy performed and then would be returned back to the Queens to continue his treatment.  As I explained and indeed he already realised this was going to be a real problem as we do not feel confident in the services that Daniel received while he was at the Queens recently and what both myself and Julie had experienced (more…)

Well it seems that more people than ever are taking an interest in our little boy, here are some of the stats from his website this month:
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As time goes by things for Danny are starting to slow down a little plus being the NHS things don’t to move too quickly so it becomes more difficult to find something to write on a daily basis. This is why on the odd occasion I may miss a day on posting something up but rest assured when something big comes it’ll be straight up. Anyhow Danny had been pretty settled yesterday so much so that we thought maybe he was moving on from all the illnesses.  Although Julie was a little reserved as he was spending all his time sleeping, now we know he is being sedated but this is Danny and he doesn’t tend to take much notice of sedatives.    Later on they did an X Ray to see what was going off and found that he had “right sided consolidation” which generally interprets to be (more…)

So where do we start? Firstly it has been a reasonably settled couple of days although we started out the week thinking that we would be moved to Great Ormond Street on Tuesday or Wednesday.  But now it looks like we are going next week sometime as GOSH wanted a CT scan doing on Danny and the images sending to them before he travels.  Danny’s CRP count (his infection score) is up again which means that he has another infection although they are sitting back to wait and see what happens as he looks well in himself.  It could well be that his body is (more…)

This morning we spoke with the consultant on duty to discuss what our wishes were with regard to Daniel’s further treatment.  We explained that we wanted him to be transferred and treated at GOSH as we feel that given Danny’s rare conditions that he would be better treated there, this combined with our recent experience with on the Neonatal unit at the Queens we feel that Daniel’s need’s will be better fulfilled at one of the top peodiatric hospitals in Britain. While he did not feel that his departure to London was necessary at this time he did understand what we were saying and this process would be put into motion and we will be notified as soon as the arrangements are made.  While this is not going to be cheap arrangement, what with my traveling down to London each weekend, congestion charges etc (more…)