The day is here, we arrive at the hospital at 9, and Matthew plays happily in the play room. He was so excited to be going to see the play nurse, he had not noticed that he had not had any breakfast or milk! We then find the blood tests from the day before had “clotted”, so more are taken. This is a very scary thing for Matthew, he has had needles stuck in him so many times, and failures so often. Still, they are done and we wait to now when he will go to theatre.
Matthew goes to theatre at 11, and we are told to expect the surgery to last at least 6 hours. We know he is in the hands of the two best surgeons possible, but the worry is still there. Leaving him in theatre never gets any easier, and I manage to keep myself together until he goes off to sleep. Then I cry and start to drop to pieces. Then the long gap of time to fill, it seems like a lifetime.
He is back in recovery at 5, and then back talking in Intensive Care at 5.15 pm. He is in a lot of plain, and very confused. He now has a Hickman central line as he will need TPN until his gut starts to work again. The next few days are really bad, he is in a lot of pain, and the pain relief team come to regularly monitor him. He is on the max of everything, so they try something additional, it helps with the pain, it is a relief to see him more settled. The downside was it gave him hallucinations, and he was talking “gibberish” and getting angry as we could not understand him. He did say after day 3, well done George, when he saw that his stoma had gone!
On the 5th June, great, he passed stool from his bottom for the first time ever! Ian and I felt like dancing around ICU. The first dirty nappy from Matthew! We though all our prayers had been answered. His nappy needed changing every hour, but it was like a dream. Matthew was still nil by mouth. Until his gut started to work they wanted him to have nothing to drink at all. Long story but there were not enough lines in him to be able to give him TPN for the first 3 nights, so he must have been very hungry. The plan was to leave him with no milk or food for a week, they then could see how much fluid his gut was making on its own. This may give an idea as to why he had a high output before the operation.
We moved onto our normal ward, and Matthew settled into his bed, and seemed a lot more settled. Ian and I had been there night and day until this point. We then started to take it in turns, so at least one of us could get some sleep at home. On 7th June at 1pm Matthew has his first milk, it is a shame but it is a new milk, and he hates it. This is a different milk that they hope will reduce his output? They are still unsure if his usual Pepti Junior milk is causing a problem. I try to persuade him to drink it, and explain it will go through an ng tube if he doesn’t, but still will not have it. Eats rice on the 9th, but still no milk. He is on TPN 24 hours a day, and is allowed one hour off today. He is pleased as he is free from pumps for an hour! They are reducing TPN by 2 hours each day, so he will have more free time. By the 10th, home for a few hours. We are very excited, we could be home in 10 days!
Then Matthew started to be sick, and he became nil by mouth again. Has an NG tube fitted to drain his tummy. Still, a long way to go, as Matthew was still sick and no one knew why. They were worried there may be some kind of loop in his gut, causing him to get backed up. He was nil by mouth, the started small amounts of single food types. He ate a potato, then they looked to see what happened to the output. The adding of different foods went on for weeks, they decided that he must have secretary diarrhoea and felt that he needed Octoetride injections to reduce it. These were sheer HELL, they went through a sub cut in his leg, and he was so frightened it took 2 nurses to hold him down, and one to put the needle in. This was 3 times a day. Life was miserable, and no one was sure it was helping.
Matthew’s output was very high, and nothing any one did seemed to make a difference. Ian and I learnt how to do the injection, as it was likely he would need it for a year. It was hopeless, we managed a few times, but it became too bad. He was scared if we came near him. On the 15th June we are home again for a few hours, although he is not himself, and we wonder if it is worth being at home. Until he eats and drinks, we do not know if there is another loop, this is awful. Until he eats, we also do not know how his gut will cope. His bottom is also very sore, despite all the creams.
On 18th June, Matthew is very sick, can’t keep anything down. He is very fed up, and we are stressed beyond words. He has Ng tube back to drain his tummy, and he is now on washouts 3 times a day. They are awful, and he screams so much. His tummy gets so distended, and the only way to get it down is a washout. In the end it is only a tube put into his bottom, then over a litre comes out.
On 19th they decide to take him to theatre again, to check his anus, and that there are no problems. There may be a problem close to his anus? They may need to redo the operation, just at that point. This is awful and Matthew looks so ill. His surgeon is away, he is due back 20th so we will see. Everyone thinks Matthew has an illius, this means for some reason his gut has stopped working. No one knows why? Goes to theatre on 21st, and his surgeon says his bottom is perfect! At least that is something! On the 22nd Matthew is eating hoola hoops and running around the ward. Our hopes are up again!
We spend a little time at home each afternoon, but then Matthew starts to be sick.
By the 27th he is being sick 6 times a day, we are worried to death. He has another ng tube put in to drain his tummy, an awful experience to have one placed. His sodium level is now dangerously low, and being badly manages by the hospital. How a child in hospital can actual get to a state where it is 125 is unbelievable. After various “blunders” I notice that his sodium input has not been increased according to his now higher output. There are various “discussions” with the specialists. They pump him with sodium IV, and he can’t have his TPN as they need the fluids for the sodium. This is awful, we are back to exactly where we were almost a month ago. Poor Matthew, we tell him he will soon be better and back home. He says “I know mummy, but I hate all this”. It breaks our hearts, and we try to keep our stresses away from him as much as we can. He knows himself, even though he is only 3 and a half, that if he is back to being sick and connected up to pumps, then there is something wrong. He also realises that he will not be home soon.
He is still going through the stress of the washouts in the treatment room, and the Octeotride injections. Our poor little man. At some points we were taking him for washouts at 3 and 4 in the morning as his tummy looks so distended. He screams “no washout please, no washouts” all the way there.
The 28th June was a very scary day. He goes for an Xray, they are worried now that there may be a loop, and he may need to go back to theatre. Ian has gone for a second Gastro opinion at
Sheffield, and I don’t want him to worry whilst he is driving, and the weather is so snowy. The surgeon explains how concerned he is, and says it is likely that the loop is very high up in the small intestine, and he really has no idea of the outcome. I cry uncontrollably, and call my sister to come to the hospital. My mum comes too, although as she has heart problems after a bye pass last year, we send her home. Ian phones me, and I have to tell him, I can’t keep it from him. Matthew looks so depressed and fed up, and is in pain. We are waiting for a scan, and the radiographer decided to do an ultra sound first, to see what he can see. It is 11 at night, Ian was back from Sheffield, and we are expecting theatre any time. Well, there was no loop showing on the ultra sound! What a complete sense of relief. I could have hugged the man. The surgeon came to look too, we all smiled.
No one knows why he is being sick, he is again nil by mouth for a week. This is the end of our first month in hospital.