Day +24: I'm Not Ready! I'm Not Ready! I'm NOT Ready!!!

I'm not ready.
I'm not ready.
I'm not ready.
I'm not ready.
I'M NOT READY!!!
Can you hear me??? I'm not ready!!!
Why can't anyone hear me???
I'm not ready.
I'm not.
I really am not ready.

So many people, all trying to toss us out of the hospital, because they think I am ready. Well, I'm not. I'm not ready. I keep telling you I'm not ready, but you won't listen to me. I have my reasons for telling you I'm not ready. I've told you those reasons over and over again, but none of you are listening. NONE OF YOU ARE LISTENING!!!

I was asked by 4 different people today if we were leaving the hospital for our overnight stay at home. After yesterday's performance, I didn't feel Sean was ready to leave for an overnight stay. I was happy for us to leave the hospital for a little while to get some fresh air and a change of scenery, but I wasn't ready for Sean to be away from the round-the-clock nursing care that we had enjoyed for the past 31 days. But every time I answered to the negative, I got this look that I interpreted as "you need to go - we need the bed - really, you need to give us the room back, now".

For a change, Professor Marshall was the one that wasn't pushing us to go home. He encouraged us to think about it, but he said that if we felt Sean needed another night in hospital before trying the overnight stay at home, then that was fine with him. Taking into consideration the medical dictionary that Sean was yesterday, Professor Marshall was happy for us to err on the side of caution and stay in hospital an extra day.

Everyone else, including Jonathan, seemed to want to push us out the door.

Laura asked if we were going home. Simone, our day nurse, asked the same thing. Irish Jo asked the question as well. And just after lunch, Prue, the nursing unit manager, popped her head in the door and wanted to know when we were leaving. As she was closing the door, she said that she needed to know our movements as someone was asking about the bed situation on the ward. I took that to mean "you've taken up that room for far too long - why are you still insisting on staying when you clearly don't need to, so relinquish the room and get out, because you are using resources that you don't deserve any more".

Jonathan did nothing to help ease my concerns. In fact, he asked what he could take home and started to pack up our stuff in the cupboards. I don't frigging know, Jonathan, if you're so keen to leave the hospital, then you do the packing and stop asking me questions. I want us to stay another night, but you're clearly not supportive of this decision, so don't ask me stupid questions I'm not prepared to answer, and just do what you think is best.

My concerns about us leaving were twofold. First and foremost, it had to do with Sean. Sean's rash had broken the skin, and if previous experiences were anything to go by, this could get infected and turn really nasty. In the past, Sean had a little bit of an immune system to fend off infections, or at least fight the infections, but with zero immunity right now, I did NOT want to take the chance of us going home with what essentially was an open wound, have Sean pick up a bug through the wound, resulting in us returning to the hospital and staying for another few weeks.

Here, in hospital, we have everything at hand. Round-the-clock nursing care, drugs, medical supplies. You name it, they have it here. During the hours when Jonathan was not with us, help was a call button away. Granted, we sometimes had to wait for help to arrive, but someone usually popped her head into our room within 5 minutes of me pressing the bell. I wasn't quite ready to give that up just yet.

Yesterday's effort made me nervous about going home. Really nervous. There was nothing to indicate why Sean suffered hypotension, hypertension, tachycardia, increased respiratory rate and became febrile all within the space of 4 hours. Everyone was keen to say it was a reaction to the platelets, but Sean had had platelets transfusion before and didn't have any problems, so to show all the wrong numbers on various machines made me wary about leaving behind our medical team.

Jonathan and I both use the word "daunting" to describe how we feel about us going home. I am not entirely sure he knows quite how daunting it feels to me. As soon as we are discharged, Jonathan will be back at work full time, leaving me to care for our son by myself, all day, every day. While I had taken very good care of Sean by myself in the past, I felt it was a different ball game now - there were so many things to watch out for post transplant, and I was solely responsible for making the call on Sean's health for most of the week. One of the things that kept running through my mind was: we are a 45 minute drive away from the people that can help us.

Here, in hospital, I have adult interaction, all day, every day. Once we leave here, Sean and I will be on our own, in isolation, at home. Granted, for the foreseeable future, we will need to come back to hospital up to 3 times a week for the doctors to do blood tests. Still, for the days when we don't have doctors appointments, I will be without any adult company from the minute Jonathan leaves to go to work, to the minute he walks through the door again. That is one thing I am not looking forward to - being by myself at home with Sean.

We were talking one more night in hospital. Not one more week. Not one more month. ONE MORE FRIGGING NIGHT. That was all.

Today, I'm not ready to go home. That's how I felt TODAY. That does not mean I will feel the same way tomorrow. Chances are, I will feel a lot better tomorrow and be keen to bump out of our room. Chances are, once Sean has a good day today and a good night tonight, and everyone is well rested, I will feel much more confident about looking after Sean at home in this post transplant new life.

The more times I was asked about us going on overnight gate leave, the more frustrated I became, because I felt no one was listening to me, nor did anyone understand my reasoning.

I yelled at Jonathan. He said he was only trying to help, but I didn't feel like he was helping. Even now, hours after our heated conversation, I still don't think he quite understood that he wasn't helping me, nor why I got so upset with him.

For a minute here, I'm going to take deep breath and tell you the less emotionally tinted version.

The medical team is thrilled with Sean's progress, and it is better for him to be at home than in hospital. Hospitals are full of people with bugs and germs (in the hospital staff, in the patients and their visitors - especially the visitors), and Sean is much better off spending less time in this kind of contained, controlled environment. They have given us all the drugs that Sean needs, and a timetable to give the drugs to Sean. And this is only gate leave for the night, for if Sean does not cope at home, or if something happens, we can always extend our stay in hospital.

All day long, I waited to see if Sean was going to fall ill. I watched for the obvious signs, but Sean remained well. Sean ate a little bit of food, and tolerated the boluses of milk really well - so much so that he even played with me while I was giving him the boluses. We gave him extra water to keep up the amount of fluids he needed over the course of the day. Although Sean's bottom was still red and looked sore, we were making sure that the broken skin was kept very clean, and we were gentle with the welt when we cleaned his bottom during nappy changes.

By mid-afternoon, it was clear that we could go home, if I was feeling comfortable enough with going home. I was still having my little niggly doubts, so instead of sucking it up and packing a few things for our overnight gate leave, we got dressed to head out of the hospital for a little while.

Dad and Mum paid us a visit, and as we weren't going to be going home tonight after all. They were happy to see Sean continuing to be well. I told them what happened and why there was a change of plans, and Mum agreed with my call. Better to be safe than sorry. We still wanted to go out for a little while, so as my parents were leaving, we got ready to head out for a walk and a play in the park.

Sean had a great time on the swing, and he had his first taste of going down the slide. He loved the slide, our little daredevil. The sun was really warm against our backs, even though it was about 3pm by the time we got out of the hospital. Sean enjoyed running around - he especially enjoyed deliberately falling on the lawn and running his hands through the blades of grass. Funny little thing - there was a time when he hated grass, and would do anything to not have to touch it!

After about 20 minutes of playing, we decided to head up to The Spot for some Cold Rock ice cream. The ice cream was lovely, and Sean enjoyed quite a bit of my cup of sweet treat. Jonathan and I both agreed that while the ice cream was nice, nothing quite compared to Ben & Jerry's!

As the day wore on, my confidence was slowly but surely building. I know I will feel completely fine by tomorrow - I just needed to get there in my own time.