January 2010

It is very frightening as we have no idea if his gut will be long enough to be able to survive without TPN. Midnight passes and Ian and I say “Happy New Year” to each other with a heavy heart. Ian and I both stay at the hospital day and night as this time, Matthew is in a serious and unknown state.

He is not allowed to eat or drink for 2 days, and it does not bother him as he is too ill. Then he suddenly decides he wants milk, and lots of it. Big problems as they want him to only have very small amounts, and sip. This is not Matthew’s style, Ian and I have to take it in turns to pretend to see if Tesco have delivered his milk to HDU. We have one bottle every 3 hours! The nurses smile, they think we are mad, but do understand. He is attached to IV fluids, but that is never enough for Matthew! Gradually he is allowed to eat small amounts, and we find that everything is just running through him, and such speed. His stoma bag is filling up as we watch it. Everyone is getting concerned, will he be able to cope without going back on TPN. Only time will tell.

After a week we are back in our second home ward 79, and Matthew feels very much more at home. He is still seriously ill, but a lot brighter, and Ian and I take it in turns to be at the hospital. Matthew’s stool output is still huge, and he is eating well, but his weight is very low. He has lost a kilo in two weeks. We stay on the ward for 2 more weeks then we are allowed home, with weekly trips back to the hospital.

It is now the 15^th January and we head home. The Christmas decorations are still up, Matthew wanted to see them when he came home. It was really hard when either Ian or I came home whilst he was in hospital, to see all the decorations, and have the sick worry in our hearts at the same time. We really thought we may have lost him this time. Yet again, Matthew bounces back and comes home very happy.

He now eats more food that Ian does, and drinks 2 litres a day of fluids. The fluids are so important so that he does not dehydrate. His stoma output at this point is almost 5 litres. We are emptying his bag at least every hour, and it is leaking so many times we lose count. It needs completely changing at least 7 times a day, and that means complete change of clothes and or bedding. We are so worried, this high loss can take with it all his essential electrolytes, so we have to be so careful, and keep a close eye on him.

All that Matthew eats is coming through him in less than half an hour, he is impossible to fill! It is now 26^th January, and we go to have blood tests at the local hospital, and Matthew is so sick we go straight to the ward as we have open access, he had full blood tests, and then actually seems to be OK, so we go home relieved. Not for long though, he is sick again that evening, so we head off the RMCH A & E. It is unusual for Matthew to be sick. Blood results are OK, and Matthew seems to recover as soon as we are at the hospital, typical!

We end the month with a lot of worries, and a lot of bag changes, but at least we are at home! Night times are a disaster, we are either up emptying/changing bags, or delivering his milk. Sleep is a luxury in our house.

His birthday at the end of January was great. We still had the worries, but we were doing our best to put them to one side for the day.

We also vow, we will not leave the Manchester area until after Matthew has his pullthrough. We feel safer being close to the hospital.  If we had stayed in Wales for one day longer at Christmas, then the outcome could have been very different.

The end of January comes and at home. No plans for the pullthrough surgery which had been planned for the 8^th January, we have to hope and pray that we do not have another prolpse before that day comes.

The pictures below are mid January, Matthew is in the ward playroom, and as you can see from the second picture, his line at this time is in his neck.