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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…)

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 (more…)

Today has seen Daniel re-ventilated as he wasn’t able to cope on CPAP any longer.  Around 7am they called us to say they had to reventilate him as he just wasn’t coping, his oxygen requirements had crept up overnight so they decided that they had to act on it.  His infection count however is still low but it transpires that his right lung has collapsed as fluid has come from the left, infected, one which is the reason why his oxygen requirements had increased.  The ear nose and throat specialist has also been to see him today but we are waiting to meet with him/her to see what they have to say about little Dan.  There is rumours (more…)

Well today saw Danny taken off the ventilator and put back onto good old CPAP though this time he’s had a pipe which has been put up his nose.  This was done sometime this afternoon and unusually for Dan it was planned. The surgeon also visited Danny today and was able to make a meeting this afternoon as he was in surgery so needless to say that didn’t happen. What he did say was that they now think that his pneumonia might have been caused by his widened airway, due to the balloon (surprise), which has been building up secretions that went into his lung and caused the pneumonia.  (more…)

Dare we say it but Danny has continued to do well again today.  He has is still ventilated but he is not on PTV which basically means that he is doing the breathing himself and the ventilator is just there to back him up if he isn’t doing enough for himself. He has also had another blood transfusion as his HB count was a little on the low side but nothing too dramatic so far. We are hoping to sit down with the doctors in charge of Daniels care tomorrow but (more…)

Firstly an apology for the hap-hazard posting of late. With how poorly little Danny has been my usual posting schedule for the website has been all over the place and that’s not so good for the general public. Rest assured as soon as things calm down I little I will get things back to a “normal” pattern whatever that is. Last night just before we went off to bed Daniel decided to be sick which again was a little old blood which could have been from any number of things such as scrapes from one of his pipes onto the side of his stomach wall so they’re going to keep an eye on that. (more…)

Once again Daniel is very poorly. Overnight he’s not been well and at around 4am he had an apnoea and needed to be tom thumbed back up. I went down to see how he was; by that time he was settled back down so I stayed for a little while before going back to bed. At a little before 7am we got another call to say that they had to reventilate him as he’d had another apnoea but after 5 mins of tom thumb it was taking him too long. So here we are almost 4 weeks since he first got really poorly with his pneumonia and we’re right back there again, still got pneumonia and now ventilated. (more…)