Still not discharged, but we are spending some time at home, on “home leave” .On 2nd August Matthew is at home with an output of almost 4 litres, he looks awful. We have spent the night trying to get fluids into him. They are coming out quicker than we can get them in. At 6am we take him back to the ward. Blood tests show we now have a level of potassium that is too high, all day connected to pumps again to rehydrate him. No TPN tonight as it has potassium in it. He has another sub cut put into his leg, and the Octeotride injections start again. This is awful, it seems that maybe he does need them after all. I felt responsible for his output going up, we had decided to stop the injections the week previously. An alternative to these injections every day is another one that can be given monthly. This had been suggested by another hospital, it was called Landreotride. We were eagerly awaiting the medical committee’s decision as to whether this could be used for Matthew. On the 4th August, we find that it has not been approved. It has never been tried on children of Matthews’s age. We feel very dejected; we really wanted a monthly injection instead. However, we also wanted him only to be given something that was safe.
All seems Ok by the 5th and we can start having day leave again. He is on alternate nights TPN again, although he is struggling with it. He looks like he really needs it by the end of the second day. We go each morning for blood tests, and if we hear nothing we can stay at home on the non TPN nights. On the 6th we have a phone call at 9 in the evening to say we need to get him to the hospital, his bloods taken at 11 that morning shows he is dehydrating. We have had a “glass of wine” and Matthew is in bed! We get him up and take him back to hospital in a taxi, and he is again connected to pumps for the night.
On 9th August he is at home for the afternoon, but he is sick again, so we go back to the hospital early. He said “it is not fair” after he was sick. This is really hard, and makes us wonder if it is worth being at home at all until he is really better? We have been asking for the last month to be retrained to be able to do the TPN again at home. We did this for the first year of Matthew’s life. They have been reluctant to retrain us as they felt he would not need it for more than a couple of months. There is finally agreement, and we can retrain, and the funding should come through in about 3 weeks. So, we are optimistic about being able to come home soon?
Matthew is home on alternate nights again, and we take him back each morning and evening for the Octeotride injections. The fear of these is with Matthew from the first thing in the morning, when he opens his eyes, he asks “is it ready for me yet”. As we drive back to the hospital for it in the evening, he will not even speak to us in the car. He is also having nightmares. He is still not eating much, but this is not so critical as he has the TPN, although not eating is not testing his gut. Until he eats normally we have no idea as to how well it will work.
We go each day for our TPN retraining, and by the end of the second week, we are signed off. We then have to actually do it 3 times each at the hospital before we can be discharged.
By the 13th August, he is sick at home, and we are back at the hospital yet again on IV fluids. When is this going to end, we are all worn out. He is not looking good at all. We are really questioning whether it was worth having the operation, but we know we had no choice. At the moment we would do anything to go back to a stoma and a bag! We feel we are just existing now rather than living. We feel like avoiding everyone, we just don’t want to even talk to anyone.
By the 18th Matthew seems to be getting better, and he is fighting every single medicine we give him, and huge fights to get him to sit on his potty. We are having to threaten him with washouts to get him to use it!
We take Ian’s dad tonight into respite care, he has had an accident and banged his head, but is not bad enough to be in hospital. He is 92 and we can’t care for him just at the moment either.
Here we go again, on the 19th Matthew is round eyed, we know that look too well. He manages to keep going until the TPN at night. His actual TPN is increased to a new dosing weight, so we are hoping that will make a difference. It does, this new amount makes it so much easier to last the day without TPN.
We have been asking whether the Octeotride injections can be stopped again. Since he went back on them earlier in the month his output has not gone back down, so is it working? It is causing so much stress to Matthew, us and all the nurses who have to inject it. Finally, we are trying a week without it and see what happens. The nurses from the local hospital have been investigating whether they could come to do them once we come home.
Still not eating much at all, our surgeon gives him a lovely present, 2 home made cakes, he had made that morning. He made them after checking with the dietician what Matthew could eat! Shame Matthew would not try them, they were lovely.
By the 28th August Matthew seems back to his old self, and getting angry that I am no good at Sonic on his play station! He asks me why I am wasting my life…he means on sonic!. He has become an expert whilst he has been in hospital. The great news too is that his output has come down to a litre. We think this is because he is on Co-amoxiclav, he had been given this for throat infection. No idea why, but it seems to be having this good effect.
He then has 2 nights together off TPN, and copes really well. This means that he only needs TPN on Monday, Wednesday and Friday nights. This is really good news. It means that a weekend really is a weekend!
On the 29th, all is well, we go to my nieces 21st Party in the afternoon, and Matthew is running around as if everything is perfect, and at the time, it seemed to be perfect in every way. There was no TPN that night, so the party and then home.
The plan is for the TPN pumps and all the equipment to arrive at home early September, we can then be discharged. It is now 3 months since the operation, and we feel sure that all will be better and this is the end of our time as an “inmate”.
Matthew ends the month looking great, and with boundless energy.