Day +27: Bye Bye, Hospital!

At 2.30pm today, Sean was officially discharged from the hospital.

In total, we spent 34 days in hospital, 1 day shy of 5 weeks. We had anticipated a stay of somewhere between 8 to 10 weeks. 6 at best. To be out in under 5 weeks was beyond our wildest dreams.

Sean continues to recover well from the transplant. His body is slowly but surely growing all the things he needs to have a fully functioning immune system. We are still a long way from calling the transplant a complete success, but we are heading in the right direction. For the time being, Sean has to take a truckload of medication, to prevent certain diseases and to help his body continue to regenerate his immune system. For the time being, we have to be in isolation and be extra careful about the people who comes into contact with Sean, but at least, we are now doing all of this from home.

We were so fortunate to have such an awesome team of people looking after us during our stay in hospital. The doctors were wonderful, and the nurses in C2 West were amazing and incredible. We became quite close to our nurses, who were at our beck and call 24/7. They were caring and supportive, and so helpful in getting us (especially me) to the point where we felt comfortable and confident about going home and looking after Sean by ourselves. We had a great team of support people too, who were there every step of the way, helping us cope with the enormity of the whole transplant process, and easing some of the pressures by being there for Sean so we could relax for a little while.

There are so many things I will miss, such as the nurse's call bell. Having the ability to raise a nurse to help me whenever I needed the help was awesome. I will also miss not having to worry about the timing of all of Sean's medications. I didn't have to remember when to give Sean which medication, because the nurses would bring the syringes in to our room and leave them for us to give them to Sean. I will miss the never ending supply of nappies, wipes and medical tapes. I will miss not having to think about cooking any of the meals - all I had to do was open the hutch and pull out the meal tray, provided I'd filled in the menu the day before. I will miss the adult company, and interacting with other adults on a daily basis. I will, to an extent, miss sleeping in the same room as Sean. And I certainly will miss having Patsy, José, Irene and Carol to keep our room clean!

But there are things I won't miss, such as that awful awful sofa bed. Even though each room had a new sofa bed installed in the last few days, ultimately, it is still not my bed. I won't miss the queue for the washing machine and the clothes dryer, and certainly won't miss the shower - although I will miss the water pressure in that shower - man, it's good! I won't miss the nurses coming into our room to monitor Sean overnight - most of the nurses were awesome and did what they needed to do without waking Sean, but there were some who weren't as skilled as the others. I won't miss the small TV that hung from the ceiling that showed Cartoon Network constantly throughout the day (it was the only channel that Jonathan liked to watch, and the cartoons were driving me insane towards the end). I won't miss trying to keep Sean entertained and occupied inside his cot.

And I have falling asleep next to my husband, and waking up next to him, in my own bed, in my own house. I have missed my kitchen, and cooking meals for us. I have missed my TV and all the shows I liked to watch. It will probably take me a couple of weeks to settle into a routine, but I am looking forward to having a home routine with Sean.

We had to return to the hospital today for formal discharge. We had a bit of a rough night last night, with Sean waking twice from not being able to breathe through his blocked nose. We got out of bed at 7am, and left the house at 7.45am, knowing that traffic would probably be bad. We had not anticipated a car accident along the way, which held up traffic for 40 minutes. From door to door, it took us 2 hours this morning, and we were not happy. (We found out later that the accident involved a car and a truck, and the elderly driver of the car died at the scene.)

Sean didn't mind that the trip was longer than expected. He slept most of the way to the hospital, happily unaware of the frustration Jonathan and I were feeling with the traffic snarl.

It was another long day at the hospital, with the doctors taking their time to come and see us. Sean gave everyone a bit of a fright by registering 37.7°C, and then went on to throw up his breakfast. Now that I was ready to go home, I really didn't want to stay another night! Thankfully, when our nurse Leanne checked Sean's temperature again, it had returned to a normal 37.1°C. It was possible that the vomit was just because the bolus feed was a bit bigger than usual, and Sean was just not happy to stomach it. We had also not given him any Ondansetron at the beginning of the day, so we weren't too worried about the vomit.

We knew we were going to have to wait around again today, so we brought a few things in to keep us occupied. Jonathan made sure he packed a charger for his phone, and I brought a book to read. We finished packing up the room, and waited, and waited, and waited for the doctors to return and say the magic words.

Verena saw that we were still around, and she came into our room to play some music with Sean one last time. Sean enjoyed Verena's visit, and it was definitely looking like I would have to invest in some guitar lessons! We will miss Verena, and her colleagues Kym and Kylie. They certainly helped to ease the boredom for Sean. And he got to do a few things that he would otherwise be not able to do at home, like finger painting.

Finally, at 2.30pm, we heard the magic words: You are now free to leave. Professor Marshall came in to our room to deliver those words himself, and we were so pleased to shake his hand and wave goodbye. We still needed to come back to the hospital tomorrow, but for all intents and purposes, we were formally and officially discharged, and we were free to go home.

I was a little bit sad about leaving our room, Bed 17 in Ward C2 West, AKA Club 2W17 @ La SCHotel. This room had enveloped us for the past 5 weeks; it was our temporary home and we did so many things in this room. We laughed, and cried, and worried, and played, and slept, and loved each other in this room. As much as I was sad, I was also glad to see the door close behind us, as we set off for our journey home.

Sean slept most of the way home, without a care in the world. Bless.

Once we were home, I unpacked everything and put it all away. It was nice to know that the luggage could now be returned to the garage, in its storage place on top of our spare fridge. Even though we were now home, we still needed to have a "go" bag packed, just in case we needed to go back to hospital for overnight stays. I hope, with all of my heart and soul and being, that Sean is one of the 60% who does not develop Graft-Versus-Host Disease.

Dinner was a haphazardly organised meal of oven baked fish fillets and sweet potato fries and steamed vegetables. Yes, it sounded gourmet, but it was a reheated and microwaved job. Sean insisted I shared my dinner with him, and he had quite a bit of my vegetables and a little bit of fish as well.

We have an early start tomorrow - we must be at clinic by 8am, so I need to go to bed. I wonder what kind of a night we will have with Sean tonight, and when he will start to sleep through the night again. If anyone has any tricks on how to help ease a toddler's blocked nose while he sleeps, please feel free to leave a comment. We have tried just about everything, but if you have any suggestions, we will try those too. Not only does Sean need his sleep, we need ours too!