A huge leap for Dan Dan

Within the last week Dan has not been well, he has had diarrhea which was quite funny as the samples that were sent to microbiology were from his nose and trachy, I wasn’t aware these came out of Dan’s bottom but then he does do everything backwards!. He has since overcome this and he did it without hardly any O2 which is a big achievement for him as his secretions always increase when he becomes unwell. His bile increases too but he managed not to vomit which again is a big achievement.

Dan’s consultant wanted Dan’s gastrostomy clamping for longer, at first it was stated it was to be done around omeprezole times but at night sometimes it is given late and he has a nebuliser after his clamping so sometimes it would mean it would be 10 pm before he has his neb and he is asleep or he would have it when he was clamped and then he would vomit. In the morning he also has so much snot for want of a better word on his chest that again he would vomit if he was suctioned and clamped so I discussed it with Dan’s consultant and agreed it should be done to suit Dan so I have steadily been increasing it since Saturday and today he has been clamped for 10 and 1/2 hours, that is up from 4 hrs. He has also spend 6 hrs on his dry circuit, I have kept on top of his suctioning so his trachy is still patent. Well done Dan.

Dan’s peep on cpap has also gone down to 8, this I was a little worried about as he has not been well but he seems to be coping with it. His sats have been above 90 and his work of breathing has not increased. It will now stay at 8 for 2 weeks. Part of me wants it to stay at 8 because I don’t want him to struggle with his breathing like he did when they first took him off cpap on the neo natal unit and I don’t want him to burn out and then have to have his peep increased further. Although it would be nice to think he could be off it if not just for a little while during the day, just like a real boy!!

Dan has also had 3 weeks of clear swabs for MRSA but because on the first one there was not a full screen sent to microbiology, they have said he needs another set of swabs sent tomorrow even though the swab that was sent was from his trachy which was clear, and in the beginning it was stated he wouldn’t get rid of it from there. This is the most important one so it stands to reason the others must have been clear. It does my head in because the doctor that requested it (I have no idea who this was) was asked if they wanted a full screen but they said ‘no’ which is fine but we are then stuck between a rock and a stone for another week.

Last Thursday and yesterday we took Dan home again for the afternoon, he wasn’t himself on Thursday so I gave him some pink calpol which is the first time he has ever had it that colour. I know that is sad but it is the little things that mean something. The community nurse and I took Dan to meet Tom from nursery then we took Tom to the park, it was so nice but then unfortunatley it was back to reality but I am told the ambubag with the peep valve has arrived. We will just have to wait 6 months now to be shown how to use it.

Last night a bed was placed in the bed space where Tom sits and plays on the play station at the hospital because of that very reason even though he has been playing there for the last four weeks and now Dan could be clear. It’s all a joke. The person that arranged for this to happen also put the linen basket in Dan’s bed space but I refuse to have a communal linen basket where my child plays when sometimes it doesn’t get emptied straight away so today I arrived and it had been removed altogether. Finally someone who listens.