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So whats been happening today then? Well last night at 22.10 Daniel managed to self-extubated himself from the ventilator, something which he has only done a couple of times but never under such heavy sedation.  So at 22.40 the reintubated him and settled him back onto the ventilator, however once again a little after 7 this morning he did the same thing again. I’m not being funny but I’m beginning to question how he’s managing to do this as he should have a nurse with him most of the time as is the case over at the City.  (more…)

One thing I did forget to mention was last night after I came back from dropping the kids off at my sisters we decided to go for something to eat. As it was half ten the only place open was the Cybercafe. This is a staff café but as we have a swipecard for the ward we could get in with it. When we went in there was a small hand-written menu on the counter. Julie didn’t fancy anything on the menu so the man said if there was something else she fancied he could make it. She asked what sandwiches there was so he went of to find out. When he returned there was no sandwiches but he said he could make her one but it would “have to be cheese I’m afraid, or I can do toasties”. So she decided on a toastie, Angie had the jacket spud and I had chips and sausage. After the experiences with catering staff across the 2 hospitals combined with the general staff here this man was so kind and friendly it made us forget about where we were for a little while anyway. Thank you.

Once again little Dan is facing more struggles.  We were told a couple of days ago that as a result of long term TPN usage he is suffering from Liver Disease, this is why he has been looking a little jaundiced of late.  During his recent operation they took a biopsy which will take a week or two to get the results back from. This afternoon the liver specialist came to visit and give an initial discussion on what the future may hold with regard to his liver. 

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Just thought I would give you a few statistics from Daniels website as they have surprised me.

This month the site has had

1. 111 unique visitors
2. has served up over 5,000 pages
3. has also had over 10,000 hits
4. The busiest day of this month was Sept 29th with 32 visitors

Not too shabby for a little boy who is only 12 weeks old today.

Well today has seen a whole new set of problems here, not for daniel just for a change. Danny has done quite well today, seems to be pretty chilled but then he’s still heavily sedated. No the problems started because of accommodation here, after I left for work jules was approached and asked to leave her room and go back home as they needed it for someone else. As you can imagine after the experience of nursing care here, her back went straight up and said no. She was told that a family had come from Birmingham and needed the room to stay in and as we were only half hour away we would need to go. Again she said no and explained that the only reason he was allowed to come here for his operation was based on us being able to stay with him. Things degenerated down with it being put on Julie that they’re being able to stay was on her shoulders which is really unfair.
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The transport unit arrived for Daniel today around 1.15pm and they busied themselves getting everything ready with him.  The surgeon came to see us and said that the wanted to do a liver biopsy to so they can run some tests to see what the true cause of the liver disease is, basically to verify that it is because of the TPN. It was around 1.45 before he was ready so we followed behind his transport unit for what seemed like forever, in actual fact it was only a couple of minutes walk.  We followed through into the waiting area outside the operating theaters while they let the surgeons know that he was here.  When they called him through it was time to say goodbye, it was a strange feeling saying goodbye and while we are always told that there is very little risk to our child each time we send him for an operation it seems all the harder. So with heavy hearts we watched them wheel him away and now the waiting was to begin.  We were told that his operation should take about an hour and if he was up to it they would also take a look at his airways to see if he had a floppy windpipe. Once again it seemed like we waited forever, Julie’s aunty Sue had arrived as we were walking Danny down so a coffee helped to lose an hour, then we went back to the room and waited.  I dropped to sleep for about an hour and woke as Julie went out the room.  Shortly afterwards Angie arrived from Endermol to visit to see how things was and more important to see Dan. This again helped to pass time quicker until finally at 5.30 he returned back to the ward.  The operation had gone well and they had decided that they should put in a gastric tube as well as the feeding tube as his tummy had been really bloated, they felt it would help him.

It’s great to have Danny back safe & sound, and more importantly having had a good nurse on today he also has a caring nurse on tonight so we may be able to get some sleep yet, if I ever get my work finished.

From here they aim to start trickling a small amount of milk in his line on Saturday or Sunday and then I would think they would like to feed him larger volumes after this.  We were told originally that we could aim to be returning to the other hospital on Sunday or Monday so its fingers crossed we can get back to normal soon.

Well the operation is due for 2pm so we’re getting really tense now. I’ve been home this morning as I picked tom up from his auntie’s and took him to playgroup. In fact I’m sat in the playgroup car park as I write. The nurse that has Daniel today is much better than last night but then it couldn’t get much worse, she seems to really care for him. Lets keep fingers crossed for this afternoon.

We just go from stength to strength tonight. Earlier on one of danny’s pumps started alarming rather loudly as there was too much pressure in the line then about 10 seconds later the other one did too. So we watched as doctors & nurses passed by without a glance then finally after 2 minutes a nurse obviously decided that it may need attention. So she came over, didn’t scrub her hands in the alcohol gel, held the pumps and restarted them which didn’t work. Then held them again, still not scrubbed, rumaged around his sheets then upped the pressures and set them going again. 5 seconds later they alarmed again so she came back, couldn’t find dan’s nurse so held them again, not scrubbed again, traced his lines and straightened them and then started them again which worked this time. She then went back to the other baby she was with before, didn’t scrub, and started handling that one. I’m not trying to be imotive with this just factual but after the high standard of nursing care we had at the previous hospital it doesn’t seem right.

We’ve just come back from taking Tom back to his aunty Rita’s, I collected him from nursery and brought him to the hospital so we could get a bit of time with him and we arrived to find Danny crying his eye’s out.  His monitor was alarming yellow because his respiration was too high, there was one nurse in the room with a doctor but they just completely ignored him!  We tryed to sort him as best we could and found he was soaked from sweat so clearly he had been like this for a while. After a few minutes a doctor came in to ask Julie for blood to cross match and we going to just leave him.  I asked her to get someone to come look at him and eventually a nurse came back and said she was his nurse. She did a little suction on him, brought his O2 down, checked his temp and then went again. Shortly after this his temperature started alarming to say it was low and again the nurse in the room ignored it and then left the room completely unattended. This went on for 5 minutes before his nurse finally returned, silenced the alarm, changed the alarm thresholds and then left again.  I just can’t believe the gaping chasm that is the difference in nursing care across two hospitals that are now supposed to be one.  Needless to say we will be taking shifts to sleep as this is the first time I can say that I really cannot leave him alone.

Danny’s transfer was due to happen at 2pm today, so I dutifully re-arranged (yet again) my appointments to start a little later so I could speak to the surgeon at 8.45. Only at 8am we had a call to say the doctor for the transfer was not available this afternoon so he was being moved this morning instead!!! Just great so again I have re-arranged my appointments around the doctors, only the forth time this week. We spoke with the surgeon and with reluctance accepted that Danny needs to be transferred for the operation but once again we made it clear he was only to stay until he was stable before he must come back to where he is. This is probably about the 10th person we have said this to so hopefully the message is clear, and this was agreed. So the transport unit turned up and after a couple of hours he was ready to transfer, they asked if we were following them around and Julie said that she’d been told she would be able to travel in the ambulance with Dan. She was told no as there was only 3 seats and they were all taken, which it transpire was so a junior nurse could experience the transport routine. So Jules was gutted, again, and we travelled behind the ambulance. Once he was there we had to wait in a room while they sortd him out. When we went in he was quite settled as he was still drugged up from the journey, we went for a bite to eat and then I had to go off to work.
About half hour ago (more…)