Day +65: A Full Day of Clinics

I know I complain a bit about going to Clinic once a week. After today, I will try my best to whinge less about our weekly visits.

Today, we had not one, but TWO Clinics: our usual morning Clinic with Dr Trahair, and an afternoon Clinic with Dr Gray. This meant we spent ALL DAY at the hospital, waiting to see one doctor or another. Joy.

The fact that we were seeing two doctors today was fine with me. I just really hated waiting around for hours until the doctors deemed us important enough to pop their heads in to the examination rooms. If Sean was a lot younger, or much less active, this would not be as much of a problem. However, there was only a certain amount of time Sean was willing to be strapped into his pram and forced to sit still before he rebelled against the restraints and got upset with me.

We left our house at the usual 7am, and fought traffic all the way into the hospital. We arrived a little earlier than expected, and had to wait for the doors to the Ward to be opened. Once we were processed, we were shown to Isolation Room 1, where we settled in to wait for the nurses to come and draw blood for tests, and change the dressing on Sean's central line and the tape on Sean's face that was holding down the NG tube.

As per usual, we waited and waited and waited for a doctor to come and see us. Time was getting on and Sean was getting tired, and finally, Dr White came to see us. She examined Sean from top to bottom, and she was pleased with Sean's progress, and went off in search of Dr Trahair for his review.

Sean was becoming quite antsy, so I put him in the pram, put the back down so he was lying flat, and wrapped him in a blanket. Within a minute, Sean was enjoying his morning nap. Dr Trahair finally came into the room about 10 minutes after Sean fell asleep, and while he wasn't physically able to examine Sean, Dr Trahair went through all his questions with me and the answers he heard made him happy.

Once Dr Trahair was finished with Sean, we were allowed to leave, even though we really had nowhere to go for the next little while. I needed to find a quiet, out-of-the-way corner to tuck Sean into, so he could have his nap and be away from the general public. We weren't able to stay in our room until the next Clinic, so we left the Ward with me wracking my brains, trying to think of somewhere for us to sit.

I knew there was a room in C2West that we could use (the teenagers' retreat where Sean took his steps of freedom post transplant), if no one else was using the room and if Prue the nursing unit manager for that ward was understanding. The only other room I could think of was the small children's playground area on the ground floor, but with Gold Week (the hospital's major fundraising period) in full swing, there was bound to be hundreds of people downstairs, and all sorts of activities happening at the same time.

I didn't want to ask Prue, but in the end, I didn't have a choice. I dropped in, and thankfully, Prue was very happy to assist. We went to the room, and just as we were about to sit down, we were asked to leave. With good reason.

The room was booked by a current patient, Dean, for him and his family to hang out and relax away from his room. Dean was our neighbour when we were going through transplant, who received his own life saving transplant about 2 weeks after Sean's transplant. Dean had already battled one bout of cancer when the doctors diagnosed leukemia, and he was quite sick during the early weeks after transplant. To see him walking around, albeit rather frail looking, was a sight to behold. As we passed each other, I congratulated Dean on his recovery and wished him well.

Sean and I went into the parents' room and took up residence in a quiet corner. It was just afte 11.30am when we sat down, and the lunch trolleys were being set up for the patients' carers to come and choose their meals. The rather noisy set up and the chatty line of people did not wake Sean, who slept soundly through the din.

As I waited, I ate the snacks I brought to the hospital, and read my book. Sean kept sleeping, oblivious to everything that was going on around him. The father of Layla, one of the transplant patients popped his head into the room and saw me, and stopped to have a chat. Mark said Layla was doing really well, which was great to hear. Mark asked after Sean, and I told him how well Sean was doing and how pleased the doctors were with his recovery, and Mark mentioned he couldn't wait to leave hospital. I wished him and Layla all the best and hoped they would be able to leave hospital soon.

Sean slept until 1.15pm, so I fed him some lunch before we headed downstairs to the Outpatients department for Clinic with Dr Gray. We reported to the reception desk and were shown into a room to wait for Dr Gray. Sean ran a bit wild in the room, as he was a bit tired of being strapped into the pram, and thankfully, not long after we arrived, Dr Percival popped her head in and started our appointment.

Dr Percival was accompanied by another Immunology Fellow, Jacqui, who had never seen Sean before but was very interested in sitting on a SCID case. Dr Percival was really pleased to see Sean run around the exam room. She asked all the usual questions, and I gave the usual answers, and Jacqui asked some questions of her own too. After some time, Dr Gray came to join us.

Seeing Sean running around the room and climbing on the waiting room chairs brought a smile to Dr Gray's face. We went through Sean's progress to date, and everyone was really pleased to see how far Sean had come. The visit was over fairly quickly, with Dr Gray and Dr Percival to call us when they had worked out the next time we should visit Clinic again.

By the time we left the hospital, it was well after 3.30pm. There was no point going home, as we were having dinner with my parents tonight, so we drove straight over to them so Sean could have some play time with his grandparents.

When Jonathan arrived, he rang the doorbell as usual, which frightened Sean to no end. The doorbell was loud, and Sean, who had been happily playing with the magnets on the fridge, came screaming out of the kitchen in tears, upset and looking for me. We buzzed Jonathan in to the building, opened the front door, and waited for Jonathan to step out of the lift.

This was the part that Jonathan looked forward to the most on Thursdays. The lift well in my parents' building was at one end of a long corridor, and their front door down the other end. Sean loved to bolt along the corridor towards Daddy, and Sean's face would light up as soon as I heard the lift doors open and I let him go. I love seeing Sean race towards Jonathan, and seeing Jonathan's face light up as well.

Over dinner, Mum apologised for not being able to look after Sean tomorrow. I told her that she wasn't allowed to tell me how much she didn't want Sean to go the funeral any more, and she agreed. To be honest, I doubt anyone wanted to attend a funeral for an innocent little man, who never had the chance to live. But we were going to support our friends, and it might not be so bad to have Sean there to bring some sunshine into the room.

It's going to be a tough one tomorrow. Lissy and Dave have asked me to do a reading at the funeral, so I hope I can hold it together and do them proud.