Day Sixty-Nine

1.  Learning from each other

You may have noticed there was no blog yesterday. We had a tough evening with the inevitable climax of my eldest back from uni with her stress and worry about Wills, the ongoing concern we all have and the fact that all three of us girls seem to sync, creating a monumental clash of hormones! As is so often the case, the explosion cleared the air and allowed us all to get to the point and talk. This included Wills who came and gave me the hugest hugs and told me about how he is feeling really openly for the first time really. I had all this on my mind all evening and, much as I am very open here about my emotions, my children's feelings are theirs and private until they choose to share them. I can say that Wills finally told me how rubbish he is feeling at the moment and was surprised that I already knew. I told him that mummies know these things! It was a difficult evening. It was charged and then emotional, but it was important and, through it, we all know a lot more about how each other are feeling, coping and, at times, struggling. We can now move closer together and support each other more.

Wills carried on in his new spirit of openness today, telling me when he was feeling rough and when things were getting too much for him. I could tell each time but it is really nice for him not to be bottling it all up anymore. Ever since I called our Birmingham team at the start of this year and told them he was unwell, he has worried that being honest with me could lead to another long hospital admission.

Today, we had an appointment at Chelsea and Westminster, fitted in because he has been so under par these last few weeks. This time, we talked about how he was feeling, possible solutions and he was able to say what he wanted. The team suggested increasing his TPN for more energy and because he has been losing weight each month for the last few months. He told them he was happy to go to 22 hours TPN but not 24 and that is what we are trying for the next few weeks. He also asked if he could eat more. He understood the need to rest the bowel if we were hoping it would get better but it isn’t, it is getting worse, it’s failed and he is waiting for a new one. He knows everything he eats passes through unabsorbed but does it really matter if it damages a failed bowel any further? He would rather enjoy food and live with the consequences! He was told food makes his stoma ‘pour out’ but he replied that it does anyway! He then suggested that maybe I don’t want him to be able to eat more than little tasters because I ‘can’t be bothered to get up every five minutes and empty the bag.’ (he did say that with a smile!) In the end, his consultant explained that he is already losing two-three litres of stoma output on his little tasters. If that rose to four litres it would be impossible to cope with fluid replacement at home and he may have to be in hospital for Christmas. I think he got the message!

So, Wills is now on 22 hours TPN every day and will carry his rucksack, containing his four litres of fluid and feed, with him the whole of that time. I hope that gives him some more energy and that he starts looking a bit less peaky. We will increase his nausea medications because feeling sick is draining in itself.

I decided not to take the wheelchair today because we were travelling in peak rush hour. That was a huge mistake! Poor Wills was shattered and very cross with me for that decision by the time we got back to his school for the Christmas parties. A lot of lessons have been learned in these last twenty-four hours and all of them will help us to adapt and cope with the coming weeks and months.

2. Come and work with a child like Wills?

The last two weeks have been exhausting with lots of juggling and very few breaks for me. William has a paediatric nurse with him at school to look after his line and TPN pumps, empty his bag and drains and record his fluid balance and to help him in the classroom. We have two wonderful nurses but they both went home to Africa for Christmas early in the month. We don’t know if they are both returning to William next year. William’s nurses are supplied by Pulse Agency as part of his continuing care package. We have nurses on school days and these nurses can stay in the home if he is too sick for school. We also have two-three days a week in the holidays. This is so essential to us. It is important for Wills not to have his mum at school as I somewhat cramp his cool style. It is important for me not to be in school so I can have a break, do my own work, try and earn money and have a rest, especially as we rarely have a whole night’s sleep.  Much as I have enjoyed spending all my time with Wills and sharing in his school day, it has been hard going to have to juggle all William’s care at home, including many broken nighties with bag leaks and then to go into school all day too.

Paediatric nursing is changing. When William was waiting for his first transplant we spent a lot of time, most of our time in fact, living in hospitals. Now, families can do all sorts of complicated medical treatment in the home, including TPN, IV fluids, IV medications as well as ventilation for children who need that. It’s fantastic. Children should be at home with their families where at all possible and children who have stable but long term and highly complicated medical needs should live as near a normal life as possible. Families need support and help though and children need to go to school while parents work and take a break. Some families have overnight respite care so they can sleep. We used to have that before William’s first transplant as he was in nappies then and needed many changes when he was on his TPN. I have friends whose children need their ventilators monitoring all night and parents need sleep.  It is fantastic to be home with our children bit we need nurses to help us. When William doesn’t have a nurse he can’t go to school unless I go with him and that isn’t always possible and is certainly not desirable.

Children’s nursing is changing and, in many cases, moving from hospital to home. We need nurses at home and in school. It is a fantastic and rewarding role. William’s nurses spend the whole school day with him, helping him learn, make things,  make friends, as well as attending to all his clinical needs. So many nurses feel upset and even leave because they feel frustrated there is not enough time to get to know the children. Well, this type of nursing gives you so much time with a child on a one-to-one basis and, in return, the children will hug you, share their lives with you and make you one of their best friends. William certainly does when his nurse gives him care and attention and helps him fulfil his goals. He really appreciates it.

The sad thing is that there are not enough nurses coming into this side of the job. Many don’t even know about. We need more nurses for William and lots of children like him so they can have the life other children enjoy. If you are interested in knowing more, please have a look at the Pulse website here. Among the vacancies advertised is one to join William’s care package so, you never know, we may see you soon.

3. Are we nearly there yet?

On our travels back from clinic to William’s school Christmas party today we dealt with delays from fire on the line at Victoria, power failure at East Croydon and poor Wills struggling to walk around the stations as I tried to rush him along to get on the trains when they did start running. It reminded me of this poem I wrote a few months ago about our transplant journey.

Are we nearly there yet?
I’ve no idea my son.
But you’re the driver mummy!
Not now my little one.

How much longer is it?
I haven’t got a clue.
But you’re the one who’s taking me!
If only that were true.

Do you know just where we’re going?
I do, but not the way.
We’re lost then?
No, not lost my child
We will get there, one day.


Are we nearly there yet?
I’ve no idea my son.
But you’re the driver mummy!
Not now my little one.

How much longer is it?
I haven’t got a clue.
But you’re the one who’s taking me!
If only that were true.

Do you know just where we’re going?
I do, but not the way.
We’re lost then?
No, not lost my child
We will get there, one day.