Today Danny was due to go down to have his contrast but as the day passed by it became obvious that he wasn't going to be going down there today. They finally rang down late afternoon and said that they would have him down tomorrow in the morning. So the plan is to ventilate him at 9am ready to be put into the transport incubator to then be taken down to radiology for his contrast.
Just spent the last 45 mins with danny awake. Started out talking to him but spent most of the time just looking at each other. As i write now he has woken again and I can see him peeping out at me.
Back on CPAP again so Danny does not feel too tired, for a first time off he has done really well and they dont want to work him too hard.
Its amazing to see my little boy without the hat on that he has to wear for his ventilator pipes and really see him face. Hes coping with being off the machine really well.
On the ward rounds the doctors decided that following the last attempt at feeding Danny, when he was sick, they have decided not to feed him again and they will be ventilating him in the morning and taking him for his contrast. If its decided that he needs an operation he will remain ventilated but if he does not he will probably be taken off it the following day. They have also decided to try him off his CPAP for a little while.
Julie called the hospital to see how he was doing and they told him they’d had to “tom thumb” as he’d stopped breathing. They said that he’d been sick and it caused him to stop breathing. Julie was not happy because they had not called her to tell her about it, she’s now lost faith in them contacting her if anything happens again and has said she’s not leaving him again.
Julie has just given Danny a milk feed of 2ml as per the surgeons request. Very little bile cam out before the feed. Once he’d had his feed Julie wanted to come with me, the longest time away from the hospital yet, to collect the children. She left her mobile number and asked them to call if anything happened.
Following the ward rounds by the doctors they are waiting for the surgeons to decide what they wish to do; do they ventilate Danny ready for transport and then put the dye into him to see if his bowels are obstructed or whether they will leave him. After a few hours they message came through that they wanted to leave him and try him on a milk feed as his bile was lighter and there was not as much of it.
When I got there tonight Daniel was completely off CPAP and had no ventilation, sorry was too shocked to get a picture. Turned out they’d had him off for 20 mins while they changed some pipes or something, he had been absolutely fine while he had been off too. He had to go back on again but it was great to see him off it.
A little later on while I was with him he was wide awake for ages (see video) and while I know it was wind he was smiling, I know wind (again see video), but it was still awesome to see it. Such simple things that were taken a little for granted with the other kids is now so precious.
Well they were still determined to take Danny off for his test so they thought that if they got him into the transportation unit early enough then he would settle before they moved him…..little did they know. When they put him in the unit once again he begun to become distressed and unhappy, at this point Julie left the room as it was getting too much. His “sats” went down to less than 50% and his heart rate fell from average of 150 to 50 and the nurse said that at one point he stopped breathing. When she tried to “tom thumb” him he wouldn’t pick up at all, so she quickly transferred him back to his cot and “tom thumbed” again and he started to “pink up” again and come back to normal. This was a fairly clear statement from him that he doesn’t want to go however, the doctors are discussed again putting him back on a ventilator and paralising him with drugs before they take him down there but they await the advice from the surgeons. Time will tell what happens next.