When you take that away I am....a Mummy!

It doesn't look like we will be home this week. William'sblood sugars are settling nicely and he is such a star taking his insulin - he sat there really still for me this morning. He is getting involved in his blood sugar testing and scoops the blood up onto the test strip before watching for the numbers. His stoma output has not been so settled today, indicating that some more tweaking of medication is required.

I was called to meet with our consultant today. He oversees all the small bowel transplant children and meets with parents to keep us up to date. These meetings are often a lot more than just medical discussion. Having a transplant is a life saving but also a life altering event. The commitment is for life and the relationship that begins with the transplant team on the pre-assessment visit is also for life. Our consultant is as interested in sorting out any concerns, no matter how small, that may impact these commitments and relationships as soon as they arise. Everything seems to get back to him - he is all knowing and very perceptive! I have been looking stressed apparently. I have been stressed, I think anyone reading this blog would have picked this up. I have been disorientated from being home briefly, back in our Chelsea Pad and then back here. Coming back here unlocked a whole heap of emotions and it has been hard being away from Hope and Ellie when they have had some growing up issues and some nasty bugs themselve to deal with. The biggest thing has been that Paul is busy working at the moment so, apart from a quick dash for a sandwich or answering a few work emails when the teacher is working with William, I have not had any breaks from being with Wills over the last couple of weeks. I didn't think I particulary looked stressed though but, as I said, people are perceptive!

One of the things I find hard from being between the two hospitals is that I do everything for William, all his cares, meds, TPN in the past and, in our local hospital (not the Chelsea Pad) I usually end up doing most of the IV antibiotics too. Here is very different. All tests, such as blood sugar monitoring and urine testing is done by the nurses. When we came in, I was doing all the medicines but the nurses preferred to do them on some shifts. I find it really hard to sit back and have someone else do these things as they have become part of my parenting of William. It is like someone saying that they will dress him and change his nappies today. Today, the consultant asked me to let them do all the medicines as well and just view it as a break. I said it can feel like you are not trusted when you do them all at home and other hospitals, and had been doing them here initially but was assured it is not that or we would never have been allowed to take him home. When parents look tired and stressed, the team like them to take a break and hand the care over so they are refreshed when they get home and have to do it all. I have already enjoyed the fact the special feed is made for us here. Why should I view the meds any differently? I still physically give them to him but they arrive on a tray all drawn up for me! I was forced to consider that feeling that they are taking something away that is central to what I do for William, central to my role in life. When you take that away, what am I? A Mummy of course! I am not a nurse, although it feels that way a lot of the time. I am a Mummy and a break from the meds means a rest to do some of the things I want to do, like reading and writing but it also means more time to play games, colour in, kick balloons around the floor, blow bubbles....be a Mummy! It also helps to build the confidence in a team who will be closely involved in William's care I hope until he reaches the time to transfer into adult care. I can't be with him all the time. He has two sisters who also need me, I have a job to do and there are some coffee shops and an art gallery here in Birmingham that I would like to spend some time in during our visits here. I felt a range of emotions about this today but ended up with a feeling of relief that almost had me in tears in front of the consultant and the nurse who was with us. It is time for William to begin to learn that he can't have Mummy every second of every day when he is in hospital and there will be times, when he is well enough, when he will be left for a while with nurses he knows and trusts while I spend time with Hope and Ellie, go to a work meeting or just take a break to do something away from the hospital.

Here's to tomorrow morning when I get to enjoy a leisurely cup of tea with a book and radio 4 while the nurse draws up the morning set of ten medications!