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It would seem that since Dan’s illness last week things are going from strength to strength. Today he was out on his playmat as usual and for it he was put on his dry circuit, this is the tubing from his ventilator which on the dry circuit does not have a humidifer, and Julie could not see where the oxygen pipe was attached.  So she asked one of the nurses where it was as it must have been connected as Danny was saturating at 100%, so she looked and showed her where it was connected.  However, that was not it as it was connected to the wet circuit, which has the humidifier attached, after looking again they found that it was not attached which mean Dan was in “air” again which he’s not been in for about a month now.  He’s now been in air for the entire day and also now that he’s asleep which is amazing as this is such a major milestone for Danny, if he maintains this then that would be awesome but best to try not to get too carried away just yet.  The unit is once again very busy which tends to mean that little Dan gets overlooked, as a result we both have concerns over what impact this new influx of patients will have on our son’s overall care.  This is something that we have spoken to the staff about previously so the hope is that it won’t happen but we’ll see.

Last night Dan wasn’t so great and was really crying a lot, which for Dan is unusual as for one he doesn’t cry and for two when he does you don’t hear it on account of his trachy.  However, last night you could really hear him and he sounded really chesty.  So I tried to suction him only to find that it wouldn’t go down properly, so I told his nurse who also tried and was able to get down properly.  But he still wasn’t right and looked like he was really struggling to breathe, to the doctor came to see him and said that it would be worth changing his trachy tube as it was due in the morning anyway and would help eliminate that from the problem.  So they changed his tube, first time i’ve seen it done, and immediately there was a change.  No more crying and you couldn’t hear him, on inspection you could see on the old one where his secretions had built up in the tube and was starting to block off.  After that he settled then finally by about 11pm he went off to sleep.  This morning before I left he was looking good although he’d only just woke but he was cool.  However, when Tom and I got back to the car we found the back window put through, great thing to find in the morning after spending the night with you sick child.  When I opened the door there was broken glass all over Bridie’s chair and the seat, was just lucky it wasn’t over Tom’s as he needed it.  Worst of all is it looks as though there was nothing taken as there wasn’t anything in the car in the first place.  There was a card on the windscreen from the police saying that they had seen it and wanted me to call to confirm that it had happened there but this was all a formality as anyone who’s had there car broken into would know.  On the up side though, if there is one, the insurance came through and two guys are here now fixing a new window in so at least I don’t have to drive round too long without a window!!  There really are some sick people out there though oddly enough almost a year ago this month I came out of a funeral to find someone in my car emptying it out who then had the cheek to walk off swearing at me when I chased him off!!!  What is the world coming too, someone please tell me.

Today has been a much better day for little Danny, he seems to be finally coming out the other side of his recent infection. He’s been really happy today, smiling and coo-ing while were playin with him which is just so good to see after how he was last week. He has continued to tolerate his feeds which has been slowly increased through the day.  Although at one point during the day one of the consultants wanted to put Danny back on TPN but Julie said that she did not want him to go on it yet and they should give him til tomorrow to see if he was still tolerating his feed.  She went off to discuss this with Daniels normal consultant and she agreed that this would be ok and said that they were not to start the TPN unless it was still nessecary tomorrow.  At this point in time he is now at 20ml per hour, which is being increased 2ml every 4hrs, and his stomach is not showing any signs of becoming distented nor is he showing any signs of discomfort with it.  Lets keep our fingers crossed that Dan keeps moving forward.

Well maybe not always a smile but it looks like little Danny is finally starting to come out the  other side of his septicemia.  He has been really poorly for the last week and from last tuesday until Saturday his milk feeds were stopped as his tummy was distended and was making him very uncomfortable.  On saturday his feeds were restarted at just 10ml per hour, down from 36ml per hour before his septicemia, but after a few hours it was found that he was just not tolerating it.  So on Sunday they restarted them again at a meer 2ml per hour but again after a few hours he stopped tolerating it as his stomach became distended once again.  They were restarted again (more…)

There has been a great deal on global warming recently in light of the adverse weather conditions that are currently running across the planet. There are storms raging in america, droughts in australia and there were the severe storms last week here in the UK and threats of arctic blasts this week. Last week also saw news of islands that had appeared in the arctic poles which appeared due to global warming. So we have to ask ourselves, “are we doing enough?”. As a country we could be doing a massive amount more but there are a number of recycling schemes by local councils which are helping to make this possible and while they are sometimes complicated they are helping to get us doing more.  There is still much more that can be done to help tackle this problem that will affect everyone in the end. One thing maybe someone reading this may be able to answer, as I know my good friends from the NHS read this site, is “why does the Queens Medical Centre not have any recycling facilities?”. I asked this question this evening to some of the nurses and they couldn’t answer but one of them told me that they took theres home. This defies all logic to me as there are around 5,000 people who work at this hospital as well as I would say in excess of a 1,000 visitors and outpatients each day all throwing recyclable rubbish in the waste bins. I can only assume that this is the case across  the board as there were no facilities that we were aware of while over at the City Hospital.  This is something that we feel strongly about so much so that we have been putting all of our recycling in black bags and taking them home to be recycled.  I mean come on where is the “green” policy here!! Should the government not be doing something to bring in policies in places such as this as there is a massive amount of waste generated.  Lets face it hospitals save lives but what about the planet we live on? If anyone has similar experiences or feelings then add your comments below.

Last week Daniel really started to come on leaps and bounds.  While he is still hooked up the a ventilator to provide constant pressure to keep his airway open his development has not been stunted by the whole thing at all.  The last week has seen him start to really smile and laugh when he see us and when he play, which he is doing a lot now. He has also started to really grab at things that he’s playing with which is really cool to see but it does have a downside.  (more…)

Today is Tom’s first full morning at school nursery.  It was a sad moment and although we took him there for an hour yesterday to give him a “taste” of it, it was still sad.  When we got to the school there were lots of parents waiting to go in and our next door neighbour was also there with her little girl who Tom used to play with before all the hospital stuff anyway.  So he quickly found his feet with her and when they call them in he held hands with her and went off without so much as a mumour.  We followed him in and saw him off to his room when they all go first.  He sat on the floor and quickly started to chat with the other children, no backwards at coming forwards this lad.  So we went outside with him quite happily at “big boy school” and after a parting look through the window to check he was ok we went on our way.  Julie was a little choked as he’s now getting a big boy but he looks like he’s gonna love it any way.

Waiting and seeing is a phase that was coined by one of Daniels nurses and to be honest this is what life seems to feature quite heavily for little Dan.  Firstly I’d like to apologise for the lack of updates over the last 3 weeks, this has been due to a number of things; firstly as we all know the run upto christmas is a little chaotic to say the least; secondly we have both been really exhausted as the last 6 months are now beginning to take it’s toll on both of us and when we get to bed we just want to sleep. However, that said I aim to bring y’all up to date and try to keep on top of things in the future.  In the last three weeks quite a bit as happened although very little of it is not things that Daniel hasn’t been through before, (more…)

Been a while now since the last posting.  Well the story there goes that last weekend we were all due to go away with friends.  We organised this back in the beginning when we first found out as we were told that we could expect to be in hospital for around 2-10 weeks…..little did we know.  Anyhow we had discussed this over the last couple of months what we would do if we were still in hospital with Danny and decided that as hard as it would be Tom would have to come first and I would take him away while Julie stayed with Dan. So this is what we did, so on Sunday night Tom and I drove up to Slayley Hall to meet up with friends.  We agreed that on the Wednesday night I would drive back to Nottingham to collect Julie and drive back up so that she could be there from Tom’s birthday and then bring her back on Thursday or Friday night depending on how Danny was.  As it turned out Danny was well behaved at least until Friday morning (more…)

Danny has continued with his upward trend and has been doing really well the last few days.  Julie has been taking a more active role in his cares by starting to do suctioning on him as well as administering his medications, under the supervision of a nurse of course.  There has been no further talks of him coming home however these things take a long time once it is put in the hands of management and burocrats so we will have to wait and see what happens.  Julie was told today that his pushchair should be ready in the next couple of weeks which will mean that we will finally be able to take him out for something as simple as a walk, which you just take for granted but would be just amazing to be able to do right now.  He also seems to be getting over the worst of his cold now although (more…)