Day +51: Ahhh, Clinic, How I've Missed Thee - NOT!

I am growing resentful towards Clinic days.

In order to get to the hospital by 8am, we have to be up and out of bed by 6.15am. I intensely dislike getting up that early in the morning, and Jonathan intensely dislikes trying to get me out of bed. We need to leave by 7am so that we only sit in traffic for an hour, and if we leave even 5 minutes later, the trip can take 80 minutes.

When we arrive at the hospital, it can take up to an hour by the time the nurses are finally finished with what they need to do with Sean, so breakfast on Clinic days can be as late as 9.30am. We need to be at hospital as early as possible, because the nurses need to take bloods from Sean for various tests, and I can't give Sean the morning dose of immunosuppressant until the bloods have been drawn. Clinic opens at 8am and not a minute sooner. Our appointment with the doctors is scheduled for 9.30am, and if the doctors run on time, we can be done and dusted by 10.30am. This has happened exactly ONCE.

Every week, Dr Trahair is late. Every week, instead of coming in to see us at 9.30am like we had scheduled the week before, he saunters in at 11am, or later. Sean tends to get tired around 11am, and more often than not, is asleep by the time Dr Trahair pops his head in. Luckily, Sean has usually been reviewed by Dr White by 10am, but we have to stay until Dr Trahair has seen us.

What I resent is that we make every effort possible to be at Clinic on time, and it seems the doctors make NO effort at all whatsoever to see us as close to the scheduled appointment time as possible.

We arrived at Clinic today on time, and were told we were in the Recovery Room again. Another thing I resent - this stark, cold room has no TV, as it IS a Recovery Room, but I need a TV to distract Sean while I try to feed him, so this morning, I all but demanded the use of a TV. After weighing Sean and measuring his height, Pam. our nurse for the day was very accommodating, and prior to setting up her station to take bloods and change Sean's central line dressing, she went in search of a TV. She came back with an iPad for Sean to play with, which was enough to keep him occupied.

While Pam was getting ready, Sean happily played on the iPad. We played different games, and doodled a bit on Doodle Buddy. Sean enjoyed putting stamps and stickers all over the iPad screen, and I was able to give him some breakfast while we waited for Pam to be ready.

When she next popped her head in the door, Pam wanted to know if she could take the iPad away, because another patient apparently needed it more. Um, NO, I need it for Sean! Why was Sean not as important as the other kid? I told Pam that she could take the iPad away, provided she came back with a TV first. If we didn't get a TV, we were keeping the iPad. She came back with a TV, and we relinquished the iPad.

Pam took the bloods and changed the dressing, and then with a bit of help from Asia, the ladies changed the tape on Sean's face that was holding down the NG tube.

And then we waited for a doctor to come and see us. Just after 10am, Dr White appeared to examined Sean and have a chat with me. She asked all the usual questions, and was pleased to see Sean well and happy. Sean's weight was holding steady, so that was good, and his skin was fine, and he had not had any temperatures or been vomiting or had any diarrhea. The blood test results were still filtering through, so Dr White left us to see where Dr Trahair was. Since Sean had been examined by a doctor, if he became tired, I was going to put him down for his nap.

And we waited for Dr Trahair. And waited. And waited. Sean did his best to stay awake for Dr Trahair, but in the end, I put him in the pram and he went off to sleep almost immediately. Megan our social worker dropped by to check on me, and she was very pleased to hear that Jonathan and I went to see a movie on Tuesday night. She encouraged me to consider similar outings in the near future, just to get some time away to recharge the batteries.

Sean was well and truly asleep by the time Dr Trahair finally showed his face. Thankfully, he understood that there was no way I would be waking my sleeping child for him to examine, so he asked me questions and ran through his list of things to tell me. Sean continued to sleep while Dr Trahair and I talked, and by the time we finished up, it was well after 1pm. Awesome. 9.30am appointments that finish beyond 1pm. Why do I bother turning up on time???

The one good piece of news that came out of the chat with Dr Trahair was that Sean's urea levels had improved, so we were doing something right with the amount of fluids we were giving Sean. Yay! Finally getting that right - if only Sean would just start drinking more water by himself.

And good news - Dr Trahair was happy for us to go to the shops, provided we were careful and didn't go when the shops were busy. If we stuck to going to the shops in the morning, well before lunch time, and don't stay out too long, Dr Trahair felt it was acceptable for us to be at the shopping centre. Of course, Sean will need to wear a mask the whole time, but as he is now quite accustomed to wearing the mask, that isn't going to be a problem.

I was hoping we would have enough time to get to Top Ryde Shopping Centre to pick up a few things for Sean, but it would have been too close to the "danger period" in the afternoon, with school kids and their parents filling the centre and spreading their germs. Plus we needed to high-tail it home as quickly as we could to feed Sean his lunch, so we stopped at the Surry Hills Shopping Village and grabbed what we needed from Coles. Once home, Sean had some lunch and a change of nappy, and it was a time to head out again, this time to my parents' place for dinner. Dinner with my parents have become a regular event on a Thursday for us; it meant they would see Sean once a week, and we didn't have to worry about what to have for dinner on a day when I was out all day, waiting for people to see us.

I must be more patient on Clinic days. Sean needs to be there for review, and the doctors will come when the doctors have time. But it is annoying that we make an appointment, we do everything in our power to make sure we are there on time, and they saunter in to see us whenever they deem fit. At least Clinic is only once a week. I have to keep telling myself that. Clinic is only once a week.