Turbulence

Danny Ben has had a turbulent time over the last couple of weeks. After a week of being poorly and me pulling my hair out and the fact no one seemed to have a clue what was wrong with Dan, he went for a CT Scan. The doctors and us as his parents had theories of what was wrong but that became only the half of it.

On the 12th September it was discovered that Dan had a bowel obstruction so that evening he went for an operation to sort it out which was never going to be easy as once you have had surgery for what ever reason you form adhesions and this in Dan’s case is a problem in itself. After 3 and 1/2 hours Rob and I decided to go to the hospital cafe to get a drink as Dan still wasn’t back. There we met the anaesthetist who told us some disturbing news. They said the bowel obstruction had happened because his diaphragm had re herniated. The worry that we felt then became a hundred times worse. We had been told that this would happen again when Dan was two but you kinda put it to the back of your mind and hope they are wrong because he was doing amazing. More than anyone ever expected of him at this stage in his life.

After a 6 hour operation which felt like a life time, he was brought back to PICU. We then had to wait a further hour because apparently he was in a bit of a state when he was brought back. We were eventually able to see him at about 1.30 in the morning after the surgeon said they were happy with the way it went, we were soo grateful. He was back on full ventilation and morphine which was a shock to see. We stayed till about 4.30 am and then went to get some sleep before returing in the morning. The kids stayed at my cousins for the weekend. Over the next day or so he deteriorated to the point where he was put on drugs to maintain his blood pressure because he kepted dropping it. Then he stopped weeing so once they sorted the blood pressure he was put on some thing to make him wee. He has continued on this trend with the weeing and the blood pressure ever since till today when we had our first smile for two weeks. It was awesome.

His tummy after the operation became very distended and red so last Friday he went for another CT which showed the bottom of his tummy was full of puss, this was also oozing out of his wound. To sort this the surgeon put a drain in the bottom of his tummy as the anti biotic couldn’t get at it. Once draining, the anti biotics then stood a better chance of working. We were so relieved he didn’t have to go back to theatre. However that night he started oozing bile from his wound which suggested that his bowel had open slightly where they had patched him up. Back to worrying, with this in mind his surgeon thought it would be of benefit for Dan to have a central line, now it really did feel like we were back to square one. His trachea had also started bleeding at this point so he was broncho scoped too by his consultant who found a graulation there which was caused by trauma of suctioning. Under normal circumstances Dan has a really strong cough and coughs his secretions to the end of his trachy but since he was sedated, the cough was absent so to obtain his secreations which were not nice at this point, they had to go further than 13 which resulted in less secretions but traumatised his airway. Probably the best of the two to have, not nice to see though. Today he has been awake and coughing so his chest and trachea are alot better and he has come down on his ventilation so will probably be back on his own vent tomorrow. Am so looking forward to that. Now we just have to wait for his tummy to settle and hope he doesn’t have to go back to theatre to get it sorted. We always knew the medical team were being a bit adventurous when they thought Dan would be back on track in a week. Daniel bowel has never taken to kindly to being handled. For the moment he is back on TPN too so that worries me from a liver point of view after last time. We are just smiling with Danny Ben to day and taking it as a triumph and are getting ready for more ups and downs with his feeding.