Day +84: Readmission

Almost.
We almost made it to Day +100 without incident.
Close but no cigars.
We missed it by THIS much.

Sean was readmitted to the Sydney Children's Hospital today, after he spiked a fever of 38.2°C. There were a number of factors that the doctors considered - Sean may have been sick with a virus, he may have had a bad reaction to the IVIg, or a bit of both.

Any way you looked at this, Sean was going to have to spend a couple of days in hospital while the doctors worked out what was wrong with him. Yay.

NOT.

I don't want to be here.
I don't want to be here.
I don't want to be here.
I don't want to be here.
I don't want to be here.

The day started badly, with C2 North not opened when we arrived at 8am. I stood at the doors, fuming that I was once again made to wait for the ward to get their act together. If I could manage to get my act together to get Sean to the hospital for an 8am appointment, then the ward should get their act together and be opened when I arrive at 8am.

Once we were processed, we were ushered into Isolation Room 1. Suzanna was assigned to look after us, and she was lovely. We got everything done quickly - height and weight measured, bloods taken, central line dressing changed and incision area cleaned, and tape on Sean's face replaced (I decided to stick with the current tube for another week, just to see if it would improve).

Everything and everyone felt disorganised this morning. Dr Gomes came to review Sean, but she felt disorganised. With Sean's immunoglobulin levels dropping each week, I was expecting his levels to be low enough to require an IgG top up by today. Dr Trahair had mentioned last Thursday that Sean would require an IVIg transfusion today, and reassured me that he would organise everything relating to the transfusion. I had even booked this in with the nurses last week, and they assured me that it would be all taken care of. Now it seemed Dr Gomes knew nothing about it.

Dr Gomes wasn't the only one. None of the nurses seemed to know anything about an IVIg transfusion for Sean either. When it was all finally sorted out, no one seemed to know what rate Sean should be transfused at, because the part of his medical file that had the information from his last transfusion was not at the ward. The file was sitting in the Outpatients department, from when we met Dr Gray and Dr Percival for their Clinic review on 31 May, nearly 3 weeks ago.

Although the file was located, no one could be bothered to go downstairs to collect the file to glean the information required for the IVIg transfusion. It would have taken less time to go downstairs and wait for the file than to call around, chase the file, locate it, and bitch and moan about the fact that it was with another department instead of back in the central filing area. Argh! Public servants piss me off. I should have insisted that I went downstairs to get the file, but Sean was awake and I couldn't leave him alone without him screaming the place down and getting incredibly upset.

When Dr Barbaric came to do her review, she looked at Sean's nappy rash and said that it wasn't anything too out of the ordinary, especially since he had the same nappy rash when his immunoglobulin levels were down in the past. It was just as well Sean was due an IgG top up today.

After what seemed like hours, the nurses finally came in to hook Sean up to the transfusion. I had hoped the doctors and nurses would get their act together and get the transfusion set up before Sean's nap time, so he could just nap through the process and we could be on our way home that much sooner. Unfortunately, that was not to be, and the transfusion didn't begin until after Sean's nap.

Trouble reared its ugly head almost immediately. Sean's temperature had been on the high side earlier this morning, but not high enough to raise any red flags. When Suzanna took Sean's temperature 15 minutes after the start of the transfusion, the display on the thermometer read 37.8°C. When Suzanna next took Sean's temperature 15 minutes later, it was 37.9°C. Another 15 minutes later, it was 38°C.

Ding ding ding! We have a winner! Red flag! Red flag! Ding ding ding!

38°C was the magic number that tipped everything over the line. As soon as 38°C was registered, there was no way we were going home.

There was a huge flurry of activity as soon as 38°C was registered. Suzanna had no choice but to tell Dr Barbaric, who started Sean's readmission process straight away. I begged Suzanna to not say anything for the time being, and to come back in 15 minutes to check Sean's temperature again in the hope that the 38°C was a fluke. But protocol dictated that Sean be readmitted based on the high temperature, and there was nothing Suzanna could do but to try and calm me down.

I wasn't calm. I was already furious with the ward clerk for refusing to go down to Outpatients to look for Sean's file. I was now fuming that no one seemed to be listening to me any more. I stomped my feet and tried to get the readmission stopped, but to no avail.

I called Jonathan to let him know what was going on, and he tried to calm me down over the phone. If we were readmitted, there was no way Jonathan could get to us in a timely manner. Jonathan was working from Ermington today, and the plan was to collect him from work in the afternoon, but here we were, stuck in hospital, unable to leave because Sean was feeling a little flushed. I started to panic, worried about how Jonathan was going to get to us with an overnight bag without the excursion costing a fortune.

With our social worker Megan not working today, I asked the nurses to call her boss Catherine to come up and see me. I needed to find out whether the hospital could help Jonathan get to us quickly, and Catherine seemed to be the right person to ask. In the meantime, it was confirmed that Sean was being readmitted, and the search for a bed in an isolation room began in earnest.

Everything happened very quickly after the confirmation came through. A bed was located, in C1 South (the general "garbage" ward that looked after all the kids with all sorts of ailments that didn't fall under a specialist department), and it was definitely in isolation. No one wanted to tell me that we weren't going to be staying in C2 West, the ward where we spent the majority of our hospital stays and the ward that look after us during Sean's transplant.

Of all the wards in the hospital known to us, C1 South was the one I least wanted to return to. It was noisy, it was always busy, and it was in this ward that we were first told that Sean had SCID. We spent 2 days in January in a 6-bed bay, and we had another overnight stay in March when the doctors were inserting Sean's central line. I really didn't want to spend any more time in that ward, but it seemed we had no choice.

What made things worse was overhearing a flippant comment made by the C2 North bed manager, who said that we should count ourselves lucky that there was even a bed available for us. No, dear bitch face, I don't want to be here, so I'm not feeling particularly lucky right now, thank you very much. Idiot.

We weren't able to get into the room until 4pm, so we waited and waited and waited. As soon as Sean hit 38°C, the nurses stopped the IVIg transfusion. There was only another hour of the transfusion to go, but in case Sean was having a reaction to the IgG, it was best to unhook him from the pump.

Catherine finally arrived to see us just before 4pm. I was now beyond panicked about how Jonathan was going to be able to join us, and Catherine's initial reaction to my request for some financial assistance did not help to calm me down. I just wanted a taxi voucher for Jonathan, so we didn't have to pay for a hefty taxi fare for Jonathan to travel from home to the hospital, and Catherine initially said she wasn't able to help. But thankfully, she could see how worked up and upset I was, and she relented and said she could spare one taxi voucher for us to use. Catherine went off to arrange for the voucher to be left at the Reception desk on the ground floor, while I called Jonathan to let him know what was going on.

While I was on the phone to Jonathan, Tina (C2 North's nursing unit manager) and another nurse came into the room and started packing all of our stuff into any bag they could see and rushed us out. I was trying to talk to Jonathan and stop Tina from jamming all of our belongings willy nilly into our bags, but Tina was on a mission, and I finally shouted to Jonathan that I was being rushed out of our room and that I'd call him back. Tina apologised for rushing us, but she was still moving us out of the room and out of her ward in break neck speed.

Down we went to C1 South, and once there, we were shown to Room 21, the same room that we were in when Sean was admitted for his central line insertion. We had barely settled in when Catherine came in, holding a "care package" from the hospital containing toiletries and a few other bits and pieces. Catherine assured me that the taxi voucher was waiting at the Reception desk for Jonathan, and promised to let Megan know that we had been readmitted. I thanked her profusely, and then Catherine was on her way to her next appointment.

I don't want to be here.
I don't want to be here.
I don't want to be here.
I don't want to be here.
I don't want to be here.

Goddamit, I don't want to be here!!!

The nurses came in and started doing their routine obs on Sean, taking his temperature, reading his blood pressure, etc. Sean knew something was up, so we sat in the armchair and watched TV for a while. I held Sean close and kissed him and told him I loved him, all the while sobbing about being in this room with its translucent windows as walls and the total lack of soundproofing.

Jonathan finally arrived just before 6.30pm, bringing with him a bag of clothes and other things we were going to need for our stay in hospital. Jonathan noticed that we were in a room without soundproofing, and hoped that our neighbours would not be turning on their lights overnight - those translucent windows did nothing to stop the light from streaming through the glass and lighting up our room.

Sean was feeling warm, and his temperature climbed a little to 38.1°C, and then to 38.2°C. The "silver lining", if there was one, was that we were already in hospital when he registered the high temperatures. Sean was prescribed with some general antibiotics as soon as we were readmitted, so hopefully, this will bring his temperature down.

Jonathan had arranged to have tomorrow and Thursday off work for the time being. It didn't look like Sean would be discharge tomorrow, with the earliest possibility being Thursday some time. I really hope we will be able to go home in a couple of days. I don't want us to be here any longer than we have to be!

Urgh. Awful disgusting fold out bed with a sliver of what was once a foam mattress = my bed for the night.

I don't want to be here.
I don't want to be here.
I don't want to be here.
I don't want to be here.
I don't want to be here.

Goddamit, I don't want to be here!!!