"ENT Surgery"

My child was booked for tonsillectomy, adenoids and sinus flush. We were told it would all happen in one surgery. 

I had the preadmission phone call and as a Cystic Fibrosis (CF) patient with a port, there was a lot to go through. At no stage was I informed that we could use the port for the ENT procedure, keeping in mind that until now we had only ever used it for CF-related admissions. 

On arrival at the hospital, again, I went through my child's medical history, including the insertion of the port. When the nurse completing admission paperwork came in I requested a pre-med tablet for my child due to anxiety issues. The nurse reassured me this was noted. All discussions were held in front of my child and surgery was to proceed as planned.

When the anaesthetist came in, they asked why we weren't using the port - as though we had made the decision not to use it. We were happy to use it, but no one had told us to prepare it. Emla cream takes an hour to work fully and it was now exactly an hour till they were due in theatre. The anaesthetist reassured us that Emla would have time to work so arranged for it to be needled. My child spoke up and asked for reassurance that it would be enough time for the Emla to work. My child was told not to worry, it would be fine. I again requested a tablet pre-med which was also organised at that time.

Two Nurses came in 5 mins later with pre-med liquid... this was a big deal due to past issues with liquid, hence why I requested a tablet so many times. The nurse seemed to look confused but agreed to swap to a tablet. My child was able to swallow the tablet happily.

25 mins later a nurse came in to needle my child's port. The nurse reassured my child that they had never missed in their career. Emla was removed and the nurse stuck the needle in. My child screamed! They have never had a painful port needle as Emla is always left on for an hour. My child turned white. My child didn't hit out or wriggle whilst the nurse tried to get the port to drawback despite the obvious pain my child was in. The nurse was apologetic but didn't seem to believe they had missed. This meant the removal of the needle and they wanted to try again. We said no, they could do it in theatre.

Then the ENT doctor came in and went through the paperwork and was surprised that tonsils were planned for the same operation. They voiced concern that it shouldn't be done all at once. This increased my child's anxiety. Then another Doctor came in and asked us why my child was having it all in one operation - these aren't decisions made by parents! It was the ENT Consultant we saw in Outpatients. We happily agreed to do what was best for our child, however, due to hearing conflicting information, our child was highly anxious now about what they would go through. When our child went through to theatre, they were trying to follow their usual routine and take the gas, but it took longer to work and they were distressed. Being put under general in this condition was stressful for us all. My child already has traumatic memories from earlier experiences and sees a Psych. 

There is an obvious communication breakdown in my opinion. Everything each Nurse and Doctor needs to know I believe is written in my child's notes, which were available and in front of them the whole time. Simple requests for tablets instead of liquid. Conflicting information discussed in front of the patient. Being told the port access was a guarantee and then having it go wrong. A painful port needling despite being told it wouldn't hurt... I can only imagine how anxious my child is going to be in 6 weeks when we have to flush the port. 

When we arrived in 3C we have had some lovely nurses taking care of our child. In particular, Kathy and Robert were caring, gentle and patient. It has been a long night after a long day.