December 2010

The first of December comes, 6 months to the day that we took Matthew into hospital for his pullthrough operation. What a six months of hell. We feel we must be getting to the point where we will be discharged? We still have the central line, and are having daily bloods to check the liver function. I can’t begin to explain how very tired and very stressed Ian and I are, all we want is to have Matthew at home and well.

We put up the Christmas tree in Matthew’s play room at home, Matthew has been asking for days when we will put it up! Last year we put them up and went into hospital for 2 operations whilst they are up. We are hoping for just one trip to theatre this time, and a good one, if that is possible! Matthew gets a bit fed up of being connected up to his pumps!

On 2^nd December, great news, the blood tests show his liver function is getting better and they can arrange to take his line out. We arrive at 7 in the morning on 3^rd December, and he should be in theatre at 9! We are very happy and excited, even Matthew is looking forward to it! He knows line out and then home! His line comes out at 11.30, and we are back home and DISCHARGED from the hospital by 8 in the evening. The snow is all around outside, and we are hoping that we are at home “forever”

Matthew is in his own bed, and only wakes up once in the night, great for him! As soon as he wakes up, all he wants to know is how many days until Farther Christmas comes? He is also very excited by something else, he has nothing attached to him for the first time in his life! No bags, and no lines. He goes to get in the bath and looks at his tummy, and runs to the bedroom mirror to look. He says “Look, I am nude”, that was a fantastic moment that we will never forget! Getting in and out of the bath was so easy, nothing to be looking out for!

He goes to nursery each morning, and joins in all the Christmas preparations. He missed them last year as he was in hospital.

The 7^th December comes, and we go for blood tests. Wow, what a good job the team did with the preparation at the end of last month, he had his bloods taken, and stayed still and only cried a little. That is a huge leap! The results come back OK, except the liver function, but it is still the same, no worse. The day after he goes to his friend Dylan’s house, has a great time. Again he says “I can run around because I have no stoma” he goes to bed that night and says “I have had the best day ever”. Music to our ears! He has bounced back so quickly, and now he believes he is better, and that is it “forever”.

On the 12^th Fraser, who is the same age as Matthew comes to play with his sister and their mummy Caroline. Fraser also has TCHD, and has had a pullthrough too, although his was when he was a baby, he too has had his challenges and spent a lot of last year in and out of hospital and theatre.

We all had a great afternoon, shame that the other little boy of the trio, Jacob could not be with us, he was not well. The 13^th and blood tests again, and Matthew is not scared, this is amazing! The results are perfect, even his liver function. No more bloods until 24^th December. We feel like we are in a happy bubble, and we are so scared it is going to pop again.

He is now running around the house singing all the Christmas tunes he is learning at nursery. He is so fit and happy, and we are too. Well, we are happy but I don’t think we could be described as fit, we were exhausted.  We have all been through so much. Matthew now is getting a cold, and we really want him to be well this week, it is the Christmas concert at nursery. We want him to have the fun of it all, his last Christmas of nursery.

We are still monitoring all his input and output. His output can be down to 1.5 litres whilst he takes the Co-amoxiclav, and he seems to be Ok with that output. He is eating very little, still drinking 2 litres a day, mostly Pepti Junior and dioralyte, and most of it at night. That is very hard for us from a sleep point of view, but he is getting enough nutrition from it. He simply has no routine at all, and sleeps very little, and wakes up often.

Yes, we are so pleased to be home, but it will take a long time to recover. Some evening we would like to watch TV for an hour, no chance! He always wakes up whilst we watch anything! That is hard now, he simply will not settle for a nights sleep. He sleeps in slots of about 90 mins if we are lucky, and it is never when we are watching TV J

The continence nurse visits, we will be entitled to 4 nappies a day when Matthew is 4. She also comes up with different “pants” that hide any daytime leaks. Matthew is still in nappies, day and night. He tells her, I don’t wear nappies at night and only sometimes during the day! Well, where did he get that “fib” from, she did laugh. I had told her about the fights to get him on his potty in the day. She asked him if she could see him go on it, he said “no problem” and went and got it, and sat on it! This made me smile, that was a one off! The night times are the worst times, and we are constantly up changing his bed, from either urine or stool. The stool is so liquid, it goes every where. I was hoping they could come up with a more absorbent nappy, but it seems not.

The 16^th comes, and we go to nursery to see Matthew in his concert, and happily singing Christmas music. There was a screen that showed acting from the Christmas story and Matthew was a shepherd. It was all fantastic, and we were so happy. When we left the nursery gave us a DVD of Matthew from the week before. They had taken 12 children to an old people’s rest home and they had been dressed up and sang carols. Matthew was a king, and I cried when I watched it. Matthew told me off, and told me to stop crying. It was so beautiful, and everything we had wanted for him at Christmas had come true so far. I looked at him happily singing, and looking so well. No one would ever have guessed what a 6 months he had been through.

We have bit of a scare on the 17^th, those dark sunken looking eyes; I try to put it out of my head. We get him to drink as much as we can, and by the next morning he looks OK. I guess that sort of worry will never leave us, it is something I guess all HD parents somehow do their best to live with. With no large bowel, he can dehydrate very quickly.

The 18^th and we all have bad cold, and we are shattered, and all need some sleep and rest! We are still having the medicine fights, but he does have a lot of them, and maybe I would fight them too?

The week before Christmas is fantastic from a Matthew health point of view, we go for bloods on the 24^th, and the hospital say they will only phone if there is a problem. At 5pm Christmas Eve, no call so we can now enjoy Christmas. Matthew goes to bed late, and every time he wakes in the night he asks “Is it Christmas now?”

Matthew wakes up so excited on Christmas morning. We all go downstairs, and his face is a picture. He looks at his pile of presents, and he walks around them again and again. He does not even open one for 10 mins. He loves parcels and wrapping paper. He is very happy with everything, especially his new bike. As the snow was still outside, he decided to ride it around the house!

Unfortunately, it is now my dads turn to be ill on Christmas day, so he and my mum have to stay at home and do not come to my sisters for Christmas dinner. We did enjoy ourselves, and Matthew had the time of his life. My brother and his wife were there and their daughter and her boyfriend, and my sister, her husband and the other 3 of Matthews adult cousins. He was the centre of attention! The video is of Matthew after Christmas dinner in his Buzz Lightyear outfit.

All of the family at the Christmas dinner and my parents were all due to go to Wales together between Christmas and New Year, we had to cancel this as my dad became worse and the emergency doctor came on boxing day.

We did actually enjoy our time at home between Christmas and New Year, we are usually all away in Wales at that time of year. Matthew was fit and healthy, and apart from the usual not sleeping through the night, all was well. We actually started to dare to believe that the next year would be a good one.

Matthew is still not eating well, and is drinking 1 litre of Pepti Junior milk, mixed with 1 litre of dioralyte. Unfortunately most of this is at night, at least 1.2 litres! However, he is maintaining his weight, and fit and healthy. This does not give us much sleep. It also makes his stool and urine levels higher but he is getting vital calories from it. We really have to do all we can to make sure that Matthew does not need a new central line or TPN in the future. He now only has 80 cms of small intestine to absorb everything he needs to live and grow.

In January, we are very pleased. Matthew manages to be potty trained during the day, he manages nursery in pants! That is beyond our widest dreams. The problem though, and we are not sure if this will ever be “cured” is the night time stool problem. He goes on his potty before he goes to bed, and again when he next wakes. During the night when his body relaxes, then the stool comes out. It is such a shame for him, he wakes up at least once and he and the bed are covered. His stool is so liquid, it would be impossible to hold it in. There is also a large volume too. Our next challenge is to find a way for him to physiologically cope with this as he gets older. We are also investigating if there is anything that can be done to help, maybe if his stool could be thicker through different medication? We do not know, but you can be sure, if there is a way we will find it!

In reality we have no idea what 2011 will bring, but we feel certain that it can not possibly be as bad as 2010. There is always a niggling worry, and that is the same with all parents of children with any kind of ongoing health problem. We are so lucky to have had our family help and support us over the last year and over the last 4 years too.

We also have the help and support of all the families that we have contact with through the HMSDN group. Without this group Matthew would have had a totally different type of pullthrough! The support of other families who truly understand how you feel and what your worries are is priceless. With Hirschsprung’s, there is currently no cure, and no family knows what the next day will bring. As I write this, we have been discharged from hospital for seven weeks and that is the longest we have been out of hospital for almost 9 months.

Matthew will be 4 at the end of January, and they have been very worrying years, but also very happy years too. We would not change Matthew in any way, and I think we have all grown through this experience. I am pleased to say that whilst Ian and I have been close to breaking point, we have helped and supported each other well. Hard to believe but we have not had one single argument through all of these stresses. I am sure we have more stresses and worries to come too.

Matthew has a potentially life threatening illness and a very “secret one” in that no one really wants to talk about “toilet matters”. It is the topic in our family from first thing in the morning until last thing at night….and in the night too!

Let’s hope that one day there will be a cure for this very cruel illness, and that by the time Matthew and his friends have children then they will not have to suffer as they have. Unfortunately as it is rare some doctors have not even heard of Hirschsprung’s, and many of those who have do not know enough about it. We have been very fortunate to have a surgeon who recognised it immediately and was interested enough in Matthew to make sure he knew all there is to know.

Thank you for reading, I hope this helps some one in some way, and lets hope for a good 2011 for everyone who is reading Matthews “A year in the life of Hirschsprung’s”. Please help to raise awareness of this life threatening condition.

November 2010

We start the month thinking, well one more weeks IV and all should be OK. Also, no TPN, and lets hope that he eats and drinks and manages to at least maintain his weight, and very importantly his electrolytes. When the line infection started, we did ask if the line could be removed. The census was, no leave it there and use it to clear the line infection. The infection was in his blood, so he needed the antibiotics by IV.

The decision is to continue the antibiotics a further week, and the one used currently once a day is to be changed to one that we can do at home. So, here we go learning another type, well Ian actually did! We felt at least it meant we were not at the hospital every afternoon. The one hour at the hospital really lasted 3.  So,we would be in control! By the 5^th November Ian was signed off.  Matthew’s weight was the same as the previous week, this was good as he had no TPN for the week. He had eaten little bit, so it was his milk that had given him all he needed. He drinks about a litre of milk mixed with dioralyte over night, every night.

We go off to see Blackpool illuminations, and Matthew loves it. It is the first time he has seen the lights, and his face was a picture! It was another of the “things” that we promised him when he was ill in hospital. The world seemed good!

Matthew spends the mornings at nursery, and by the 9^th the 6 hourly IV’s can stop. What a relief, we can now relax a little more. The once a day one will last another week.

Bad night on the 10^th Matthew’s temperature is 39.8, and we are worried. No sleep, and we decide to take him back to the hospital at 6 in the morning. The decision is made to book him into theatre and remove the Central line, and put a canula in to complete the rest of the IV antibiotics. Then after a few days, home! The test will then be, can he cope with no TPN.

Matthew’s bloods are taken the night previously and his potassium level is too low, he can’t go to theatre unless it is checked again. We await the results, which are Ok as he has been given IV fluids with potassium overnight. So, yet again we take our little boy to theatre, but at least it was not for an operation this time. Also he had his central line, so no gas mask to put him to sleep. He was actually OK about going to theatre this time. It is still awful leaving him there. So, the line will be gone and that is the end of line problems!

The worst then happens, the night of the 12^th his temp spikes at 40.6. He starts to shake with the rigors, it is awful. He becomes so sick, and no one can understand why? The infection is being treated, so the infection should be almost gone. He is now so very ill, he is just lying in bed very sick. The hospital were trying to keep him on the ward rather than transferring him to HDU, we were in a single room. We did not want HDU as Matthew was so settled in this room. The staff were fantastic, and at one point we had 3 doctors and 3 nurses checking on him. His little body had already fought so much, we were so scared. We honestly thought we would end up in ICU, and the worst thought of losing him was unbearable.

On the 13^th, they then find that he has an additional blood infection, the line showed he had another infection, fungal. This is classed as very serious as it can grow very quickly and is hard to clear, it can also grow in all the organs in the body and cause damage. He then has a heart scan, a liver and kidney scan and the optometrist comes to check behind his eyes. All seems to be OK, with the exception of his heart, they “think” they can see a fungal problem but will need to check again in a week.

He now needed stronger antibiotics, and for a minimum of 6 weeks. Our hearts sank, although in another way it was a relief, at least they now knew what they were treating. However, a canula was not suitable for long term IV’s, so another trip to theatre to have another Hickman line. They hoped the canula would last long enough for him to be well enough to go to theatre to have a new Hickman line in a few days. They start him on the strong antibiotics, and warn us one of them can cause kidney damage, so they will be checking his blood every 6 hours for the first few days.

On the 15^th, the canula fails, and there is no access to Matthew for IV’s. The doctors had already held him down the night previously to try to put another one in, so he would have 2 access points. His viens have been used so often. He was so seriously ill, and normally he would be classed as too ill for theatre, but it was vital for him to have access for the IV’s. Everyone stressed that it was not ideal to take him to theatre, but there was no choice. We take him to theatre once again, and it is not getting any easier. It is also becoming too frequent. He comes back from theatre with a canula in his foot and a Hickman line in his groin. The great news is that they find that there is no problem with the fungus in Matthew’s heart, what a relief! Our surgeon arranged for them to have a look with an ultra sound whilst he was in theatre.

He then develops a red rash, no one can identify it. The paediatrician comes and a dermatologist comes over from Liverpool in the evening. It is thought it is a reaction to the antibiotics. The rash starts to spread all over his body, his whole body became swollen, and he had an adult name band put on. Even his normally tiny thin wrist had swollen dramatically. We looked on helpless, and all the time we were so frightened for him. He lay in bed and did not want to even speak. We even gave him his Christmas present of Buzz Lightyear early, he was so looking forward to having it. We opened it up and he managed a small smile.

By the 17^th he is much more like himself, he is showing an interest in what is going on. I had asked all my HD mums and family to send him get well cards. This may sound strange but he is ill so often that he rarely gets cards, and he loves receiving them. He loves envelopes and parcels. He gets so excited when he sees cards for him. This is the first sign of the old Matthew being back with us.

On the 18^th, He has a blood transfusion that night, and we knew he would be a lot better after it. He really is much better, and is back fighting against his medicines and going on the potty. We have never been so pleased to have the fight. We honestly were worried we would never have the chance again.

By the 19^th, he is back to his normal self in character, although he is still covered in red marks, at least the swelling has gone down. We breath a sigh of relief, even though we know we still have a way to go. It does not seem life threatening now. By the next day he is on the computer and being himself.

On 21^st, he is doing so well and the hospital is happy. His bloods are showing all is going to plan, the antibiotics will stop tomorrow, we then have to wait and see if his temp rises? It is an agonising day. We are so happy as it is OK! His temp now needs to be Ok for 3more days then line out! The whole team want to remove it asap. They tried to save the other one, and having seen the effect, they don’t want to see this new line with an infection.

We wait the few days, and his temp is OK, so everyone feels it is safe to remove the line! When a line is put in a groin it is not expected to be left there for long, because of the position of it, it is prone to infections! When he was in theatre, they put this in as they could not get a long line in, due to the state of his veins. There is also a concern for the future, if he does need another line back in, they are almost out of places to put one. They have to go into a main vein, and they have used them all up. Let’s hope we don’t need to think about that in the future? He has lost almost a kilo in weight whilst he has been ill this time. We have to pray that he will eat and put it back on when he comes home. Home, “what a lovely word”.  We all go home for the afternoon on the 22th back to the hospital in the evening.

On the 23^rd, we then find out there is a problem with his liver function, shows in his blood results. Our hearts sunk, we were expecting the line to be out this week. BUT, understandably they will not take it out unless they know he is well, and that he does not need the line for yet more reasons! So, he spends the day yet again connected to pumps, need to give him IV fluids until they know his next blood results. He goes for a scan, and thank fully they cant see a big problem, just that his liver is enlarged!

We are allowed home for the day and the night of the 25^th, a great time, we are starting to believe all will be OK. Matthew has to have blood tests each day, and if the liver shows signs of improving then they will make a plan to remove the line. So the waiting game, yet again. It is so good to see him in his own bed, but awful to listen to those awful dishwasher noises coming from his tummy. His output is still high, so we know we will have more to cope with in the future.

The 26^th, and great news, it seems as if Matthew’s liver is getting better! We can stay at home for the weekend and then back Monday morning for bloods, and if they are OK, then the line will come out! We have a great weekend at home, although after all we have been through, it is hard to relax. Matthew is up as usual most of the night for milk drinks! However, if that is what is keeping him Ok and off the TPN, it is worth it. We do not feel that when we are up for the third time in a night though!

Hard to believe, but on the next day, Matthew is sick, and is not passing any urine. His output is really high, and his eyes are looking sunken. Back to the hospital, and connected to pumps again for 5 hours. He starts to look a lot better, but the bloods show his sodium is low and his potassium is too high. No plans for theatre as his bloods need to be perfect and he needs to be well. This is getting harder by the day. The ups and the downs, both are hard. When we have the ups, we sort of know there is likely to be a down on its way! By the 28^th, his levels are OK, by the 29^th his sodium is too low. Frustrated, and getting angry with everything. If his output was not so high, then these problems with the electrolytes would not be so bad. We ask to be referred to GOSH for a second gastro opinion. If we don’t eventually solve this then, we could be virtually living in the hospital again in the future. He spends the next 2 days and nights connected to IV fluids. It is becoming very hard to occupy Matthew, he is being so good. It has been months that we have been here, and he has become a games expert on the Play station and a wiz on the laptop!

On the 30^th we go home for a few hours, and it is bliss. Just to sit in our own chairs and have a cup of tea!  Matthew is happy too, although he keeps asking the same question “when will I be home for ever?” He has kept asking this over the months, and we have not really been able to give him an answer. Although when we thought the line was coming out, we had told him only a few more days now. We were wrong that time, so we have to be careful.

The last week two weeks in November the hospital psychologist met with us to discuss Matthew’s fear about hospital procedures. The nurses and doctors knew how scared Matthew had become of anyone coming near him to do anything apart from accessing his central line. He had been held down so often for washouts, Octeotride into subcut, trying to insert canula’s and many more “things”. He was now so frightened he was having nightmares, and also there was no chance of him staying still enough for anything to be done. As soon as his central line was removed there would be weekly blood tests, and he needed to be able to cope with them. The play nurse and the IV team spent an hour each day with all of us for the 2 weeks. They were fantastic, they “played” at getting out all the equipment, putting on the “magic” cream, and using the band on the arm to look for “wiggly lines” then the needle in for the blood to be taken. He was very apprehensive at first, and cried about the bits he did not like. They took photos of us all doing these things, and they were put in a book for him to keep. He learnt the 5 special steps to taking blood! We will know how well it really worked when he has bloods taken!

So we end November, hopeful that it will not be too long now, but we are still in hospital.

October 2010

All is well, we go to see Postman Pat Live at the local theatre, and Matthew really enjoys it. We had promised him so many things when he was in hospital, and this was one of them.

Matthew decides now that he does not want a wet nappy on in the night, so every hour he wakes and screams for a dry one! So, we are up even more than usual! I think his bottom is sore, and the urine is hurting it. We are getting very tired now. It is hard enough doing the TPN, and the medicines, and the fights on the potty, and all the milks in the night, this is almost polishing us off. We are so happy to be home, but we are sleep deprived.

He is at nursery 5 mornings a week, and so we do get a little time for a break! He really is looking and seeming well. How, on almost no food, and little sleep?

Ian goes away to work for the week, so I am home alone with Matthew. It is a good sign though that Ian can leave us. I do the TPN, and my mum and my sister come round to occupy Matthew whilst I set it up. It seems a bit more of a responsibility when I am on my own.

We manage a 6 hour urine collection, so he went to nursery in pants one morning, his teacher was very good, and managed to collect it. He was also good and he managed to know when he needed to go!

By the 6^th his weight and height are on the 50^th centile, brilliant, so the hospital now suggest trying only 2 nights a week on TPN when we get home from our holidays. We had booked a week at CentreParcs, when we thought he would be home by September, it was the third time we had moved it. It now looks like we will go, with all the pumps and TPN!

The 7^th is the hospital dentist appointment. Matthew had 10 teeth taken out last year. They were rotten, mainly due to all his medications. I am now worried about his two remaining top 2 incisors, they have holes in them. We wait for 2 hours as they are running late. Still, relieved that they do not need removing, but need filing. They decide to do this gradually over a few months; they can see how scared he is of any one medical being near him. So here we go again, an appointment every two weeks for them to work on him! We are destined to be attached to the hospital for something! Still we have a holiday to look forward to.

He goes to an activity centre party on the 9^th, brilliant. It is so good to see him running around without a care in the world. He has no stoma to worry about coming out, and I also don’t have to worry about bag leaks!

The 11^th and we are packing up a car load of our belongings, plus pumps and all we need for the TPN. The TPN will be delivered to CentreParcs and they are giving us an extra fridge for us to store it. We arrive, and all is great! Matthew is connected to his TPN by daddy, great! Hard to do when you are in unfamiliar surroundings, and have to be sterile too!

The holiday was simply fantastic, Matthew went to a teddy bears picnic, and saw Rupert bear, we went out every day and the weather was dry.

He loved having the bike we had hired, and he went every where on it.

The only thing we decided not to do was go in the swimming pool, we were worried he may get a line infection there. He went Tenpin bowling, and had a great time in all the soft play areas. He was singing as he went around all week. He was so fit and healthy. Even though we had the TPN, it was still a great time. We all relaxed and it was great knowing we were going home to only 2 nights a week on TPN. There is an underlying stress, but we keep on top of it!

The next week or two are good, Matthew makes it to nursery every day, and Ian and I actually go to Ikea on our own. What an outing!  It was so good, just the two of us.

Life seems good, and we are slowly starting to really believe that we have come though the worst.  Only 2 nights TPN, wow that is great! Would be perfect if Matthew slept all night, but we can’t have everything!

Matthew goes to our local hospital on the 20th for his MMR booster and his flu jab, apart from being frightened all goes well. The immunologist gives then to him on both sides at the same time! 

We decide to go to Wales with my mum and dad on Oct 21^st, all seems to be going so well, and we wanted to go and see the sea and have time somewhere different! We now felt free! We went out for meals with Matthew, and he would eat half a chip! How he kept going eating so little? He was drinking a very large amount of milk day and night. As this seemed to be keeping him fit, we did not want to change anything! We go home on the 24^th and everything is great.

The 26^th brought an awful time. Matthew was connected to his TPN at night, at 10 in the evening he started to be very sick. We took his temperature and it was 38.8, far too high. We knew something was wrong, and feared the worst, a line infection. They are more likely to show when they have just been connected up as all the infection is pushed through the blood stream. The line goes into a main artery that is why being sterile is so important when he is being connected and disconnected. Yet again, off to A & E, by the time we arrived his temp was 40 and he was very sick. He is admitted to the ward, and all he wants is someone to sit with him. He is very poorly. They start him on IV broad range antibiotics and take blood cultures. They can’t treat it accurately until they know the exact bacteria. It can take days before they know.

We knew that this would be more than a few nights in the hospital as Matthew had line infections before when he was a baby. They are very dangerous and can be life threatening. It seems hard to believe that we are so unlucky just when he was down to 2 nights a week TPN. The next stage would have been no TPN, and see how his weight and bloods go. He is really sick and we are very worried.

The next few days are awful and he just lies in bed, and almost does not want to talk to anyone. We have never seen him so fed up. His temp is spiking as soon as the paracetamol wears off. He needs an IV antibiotic every 6 hours, we learn how to do this. Time wise this is difficult as we have to actually do it 3 times to be signed off, one for each of us was 4 am in the hospital, very tiring.  If we chose to let the nurse do the 4am one, then it would take 6 hours longer for each of us to be signed off! We wanted to be able to get home as soon as we could handle everything ourselves. The first time I tried it, I pulled back the syringe to remove the alcohol line lock, and blood came back with it, it was awful just like taking your childs blood. Although Ian actually did take bloods in the end to speed up what was going on in the hospital. We were doing almost anything we could to get Matthew home again.

By the 28^th he was much better and played in the playroom, they had identified the type of line infection, and decided on the exact antibiotic. His temp has been OK, and if Ok the following day we could go home!

We have to go back to the hospital each day for the hours antibiotic infusion. This one is too complex for Ian and I to learn.

By the end of October we are home! It is a real struggle to do the IV in the night at home, it is better two handed, so we are both up and scrubbed up to access his line at 2 each morning. The other ones in the day do not seem too bad as it is daylight hours. The frustration though, when the hospital one runs late for any reason, then the 6 hours moves out my the same amount of time, and we really want him to go to nursery in the morning after an IV. The timing of the 6 hours is critical to him being home at the time he needs it, and not at nursery. May seem a small thing, but we really wanted him to have a bit of “normal” at nursery.

A big decision was also made at this time, we would try to see if Matthew could manage with no TPN at all. If he could manage to keep his electrolytes in balance, and at least maintain his weight then he may not need it. We were hoping and praying that this would all go well. It would mean that the central line could come out in a few weeks time. The line was left in and they were trying to save it, but was it really needed for TPN? It was being used now as he needed it to clear the blood infection, and the IV had to go through it. We were hopeful, but not very confident as Matthew was still eating little or nothing at this time. How would he be able to even maintain is weight. Only time will tell!

All seems to be well, and Matthew is so much better. We just have to give the IVs for 2 weeks and all should be OK! We end the month optimistically.

September 2010

We start the month spending most of our time at home, even though we have not been discharged. We have one day at the start of the month where Matthew falls asleep in the day, very unusual, and he is very lethargic. A night on TPN and everything then seems OK.  It only takes Matthew to be slightly “out of sorts” for my heart to sink and I start to plan for the worst. So, relief! It is such as shame he has to have the TPN, but it really is a life saver, and to a degree also gives us sort of comfort as we know when he has been on it for the night the next day is a guarantee of him being fit and healthy!

We go back to the hospital for the nights on TPN and for blood tests. Life seems to be getting back to some kind of normality and we feel far more positive about the future, and we no longer doubt whether the pullthrough was a good idea. It is lovely to be free of the never ending bag leaks and changes.

My mum had bought tickets for Matthew to go with us to the Science Museum in Manchester, there was a special visitor, Thomas the Tanks. Matthew was very excited, and we all had fun there, we actually went on the steam train, although it was only for about 15 mins, Matthew loved it. This was a great escape, and we knew that home “forever” was not going to be too long off. My mum cannot come with us as she goes into Christies hospital to have her thyroid “zapped”, and this means she will be considered radioactive for 3 weeks, so she has to stay in her home. Matthew is sad that he will not see her.

As I look at the picture above, it is hard to believe that he has been through so much, and can look so good!

Ian and I actually administer the TPN ourselves this week. I had forgotten how stressful it is. We have the added IV infusion to learn too as he will need this at home. We were lucky that the specialist nurses who trained us 3 years previously were still there, and it made the retraining a lot easier. They also knew us well by then, it was like having friends keeping an eye on us.

We clear out a room at home ready for the pumps, the fridge and all the equipment we need, a lot of space is needed for all the supplies too. It is a happy day preparing it, as it is a day closer to being at home. We pass the 100^th night in hospital, and that was never in our worst nightmares!

It is getting hard to get Matthew to sleep much at all, he is in his bed one night, and the hospital the next. We are all very tired, and in between times Ian and I both get bad colds and still have to go on regardless. We are relieved that we are no longer having to think about the Octeotride injections, the hospital agree that Matthews output was not being reduced whilst he was on them. The Co-amoxiclav seemed to be doing what was needed to keep it to a level that was acceptable.

Discharge planning meeting at home on 7^th September, with the specialist nurse from the hospital, our health visitor, and the community care team from the local hospital.

On the 8^th September Matthew should start back at nursery, but he has a bad cold. We hoped this cold would not have any other effect on him. Even though he was in hospital we were hoping he could go to nursery in the mornings. Matthew stool turned green on the 9^th, when he was at home, I dashed with a sample to the hospital. All was OK, it seems the antibiotics he had started were the cause of that!

The 10^th September, my birthday, and Matthew in hospital, but hopefully a few more days and we will all be home together. Discharge date 13^th September! We pack everything up at the hospital on the 11^th, and go back on the Monday to be officially discharged. We had accumulated so much “stuff” whilst we were there, and the walls were full of pictures, and windows full of stickers. We had made his bed area almost like a sitting room! We had been there for three and a half months.

The 14^th September and Matthew starts back at nursery, with no stoma! He is in nappies, and seems to be only passing urine in them. He saves his stool for the potty. Quite amazing! He is going to be there 5 mornings a week. That will be great for him and great for us to. We have been with him 24 hours a day for almost 4 months now.

Matthew is connected alternate nights to his pumps at 7 each evening and we lock him off at 7 each morning. It does seem sad to see him in his own bed connected up. However, we have a superb week and Matthew is well and back to normal. He soon settles into his own bed, and understands that he cannot get out of it for anything when he is attached to his pumps! Just one shout, and mummy or daddy are at his side.

He does not seem well on the 19^th and says he feels sick, he has no energy, his output is high again, and he is still not eating at all. Even though we are at home, we are still worried. In some cases it is harder and we have no one to ask to have a quick look at him. There is some piece of mind in the hospital! We are still having the medicine fights, and we are giving him 38 syringes a day, split over 4 times. He misses nursery as he is not up to it. We have a planned visit to have bloods taken on the 20^th, they suggest we put him on the TPN early as he does look as if he may dehydrate. Blood results in the morning show dehydration, so we go back for more tests, although after a night on TPN I am sure they will be OK, and they are.

On the 20^th the hospital agreed to put Matthew back on the Co-amoxiclav for 5 days, and see if his output comes down again. We are relieved as we are sure that it reduces his output, and it does. He will now take this long term, we will try to reduce the number of doses over the next few months to see if he can manage with slightly less. It has penicillin in it, and ideally this should not be taken long term.

The next day he is great, and we spend a lovely day in the garden, filling hanging baskets and being like a “normal” family. Great too, my mum comes around to see Matthew, he was very excited to see her, and kept asking her why she was not now radioactive, big words for a little one!

By the 27^th the hospital are ready to try Matthew with 2 nights together off TPN, and hope his bloods will be OK. They also hope it may make him start to eat? Apart from eating, everything seems to be going very well, and we are finally relaxing a bit, and are happy. Our only problem is a sore bottom, but with lots of cream, we solve that one too. It is something that we have to take great care of, if we miss even one cream after changing a nappy, then the skin becomes so red and inflamed.

All goes well, we go to the Lego discovery centre and have a good time, wow, this is “normal”. Urine tests show his potassium and sodium levels are too high in his urine, so we are dropping the amount we give him as supplements and more blood tests at the end of the month.

Matthew goes to a friends 4th Birthday party, and he has his face painted for the first time, spider man, he was so happy that day. He had more energy than the other children at the party and joined in all the dancing.

The month ends well, and we are full of optimism for the future. Ian agrees to do some work away down south for a week in October, so Matthew and I will be home alone. We feel like we are living in a happy “bubble” and we don’t want anyone to come along and burst it!

August 2010

Still not discharged, but we are spending some time at home, on “home leave” .On 2^nd 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 4^th 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 5^th 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 6^th 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 9^th 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 13^th 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 18^th 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 19^th 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 28^th 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 29^th, all is well, we go to my nieces 21^st 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.

July 2010

The start to the month is not a good one, Matthew’s sodium levels start to take a dip yet again. By 2^nd July they have stabilised the sodium, and Matthew goes back on TPN for 24 hours a day. He is again nil by mouth for the next 3 days.

By the 5^th, Matthew is actually showing signs that he wants to eat, he even makes a card for the gastro team saying “you are mean”! It is decided to let him go back to the milk he will drink, Pepti Junior. We felt he was better having something he would drink, rather than not drinking the milk they thought was better for him. The new one would not do any better if he was not drinking it, and we did not want him to be ng tube fed. He does start to be more himself, and is being sick less often.

Time at the hospital seems to get eaten up, as we wait for the various specialists to come and go. As one leaves another one seems to come.

Our surgeon comes to see Matthew and asks to see his potty,he says it is a very boring one!  He comes back the next day and brings stickers to decorate his potty! What a surgeon, the best! He sits on the floor by Matthew and they put stickers on it together, and the surgeon tells Matthew if he can use his potty to poo, then he will not need the washouts as often.  He tells us that when he took Matthew to theatre, as soon as his legs were lifted into the sitting position, there was an explosion of stool, and he felt that Matthew could empty himself just by being placed on his potty! He leaves and an hour later Matthew asks if he is going to come back to check! So, he sits on his potty, and wow, we have a poo on the potty! We are amazed, he can actually have some control! After this he goes on every couple of hours, and only rare washouts. He is very proud and so are we. He is still producing a litre a day, even though he is nil by mouth. The gurgling noises in his tummy are very load, it sounds like a dishwasher.

He then starts to eat a little and we have no idea if his gut is working or not, there is so much coming out into his potty, it seems to be rushing through. But, thanks to the TPN, he is starting to look good and by the 8^th they start to reduce the TPN by an hour each day. Matthew is running around and very excited to be free at this time. He actually calls it his “free” time.  He can now eat more foods, and is eating some, but not a lot. We think the TPN is having an effect on his appetite. He is getting everything he needs from a nutrition point of view directly into his veins, so his body is not actually “telling” him that he needs to eat.

We are starting to be optimistic again, although we are so very tired, with the worry and the lack of sleep. Hospital is no place to sleep, and Matthew is very unsettled at night, Ian and I take it in turns to stay at the hospital. It is sort of like being an “in mate”. We also try to split the day into 2, staying a whole day is hard too. It is great he is a lot better, but it is now hard entertaining him all day when he can’t move far as he is attached to his pumps.

On the 14^th July we start to bring Matthew home for the 4 hours a day he is off TPN, this is great time, even though we are very tired. Matthew wants to know when he will be able to come home and sleep in his own bed. We simply have no idea. We are learning how to do the Octoetride injections again, so that we can have more time in the day at home. We try for a few days again, but it is impossible. We are now questioning if they are doing any good? His output is too high. He looks well though, and the TPN is doing him good. He has put on a kilo in weight.

We have one night of worries when Matthew is complaining his tummy hurts, and he refuses his potty. Hard to bend his legs to make him sit on it. We are praying for no washout. He now will only pass urine in his nappy, and no stool. Eventually, he does sit on the potty, but only with the threat of a washout. He seems to learn from this, if he sits on his potty, then his tummy stops hurting! It is awful though to know he is in pain. He does not seem to settle at nights at all, and his tummy makes such a load gurgling noise, you can hear it outside the ward. We call it the dishwasher sound. It is also hard to settle at night, other children’s pumps seem to alarm all night, one after another. There are only 2 staff on the ward and it is impossible for them to keep them all quiet. We manage to stop Matthews alarming, but then have to go to find a nurse to start the next infusion. Frustrating at 3 in the morning! The staff do a great job, but there needs to be more of them. We also seem to get “new neighbours” on most nights, so the new arrival and all the lights go on, docs come etc. Not a place to sleep!

On the 15^th it looks as if Matthew will need a blood transfusion as his platelets are a problem. As they have taken bloods from him every day for 6 weeks, this does not come as a surprise. It may sound strange, but when he has had these in the past, he looks so much better, we are not worried. It is just another 4 hours that he will be attached to pumps. The 16ths results show an improvement, so the transfusion is not needed.

On the 21^st the surgeon wants to dilate Matthew, to check that his anus is Ok, we are dreading this as it is yet another trip to the treatment room. Matthew has become so frightened now of going even near the room. If there is any sign of a problem inside then he will have to take Matthew to theatre the next day. All goes well, it is over in minutes, and the surgeon is happy. He used his finger, and said great! What a relief.

By the 24^th we are at home 8 hours a day, and life seems a lot better. Matthew is much more himself. His friend Dylan was going to the local fun day with him, and Matthew said “great, I have no stoma to worry about, so I can run round fast with him”. That shows how much Matthew had worried about his own stoma. In the past he has been running around, and then gone off to hide if he thinks there is a problem. A previous time daddy looked under his vest and Matthew said “please daddy, no hospital”.

They had a great time at the fun day, then back to the hospital. If you look at the picture, he looks happy, we are a bit jaded, good job we are not including pictures of us.

As Matthew is starting to feel better, we go back to the 3 year old who wants to show he is in charge! We have battles now about everything we need to do, especially the potty and his medicines. He does not want to go on his potty, so we use a timer, set for 3 hours, and when it goes he has to use it! It seems to work some of the time, as he seems not to think it is us who are making him do it? The medicine battles, awful. He has 38 syringes a day of different medicines and supplements. Some of them are awful, especially the Potassium Citrate and Sodium Chloride. He fights every single one of them. Unfortunately, we are so tired, it is hard to keep calm and make sure he takes them. It is not something that we can “negotiate”, we do try lots of bribes! It seems like we are battling though from morning until night, and then even in the night as he still is not sleeping all night. He has also become used to having either Ian or I in bed next to him at the hospital, so the easiest thing is for one of us to sleep in the spare bed in Matthews room on the nights he is home. We are pleased to have this time, but wow, we are tired.

By the end of July he is on alternate nights TPN, so we are spending more time at home. We are getting frustrated now, the 12 hour timing of the TPN is important to us getting the right time at home. If he does not get connected until 10 at night, then he will not be off until 10 the next morning. We have to be back at the hospital for 7 in the evening, and we virtually beg the busy nurses to connect him as we arrive. It is not a quick procedure and all depends on how busy they are. We asked if we can be retrained to do the TPN ourselves, so we would be in control. We had done this TPN at home for the first 12 months of Matthews life. They would not consider retraining unless they were sure that he needed it long term.

It is fantastic to have more time at home. We are very stressed though, as we have to keep a close eye on his fluid balance, his output is high even though he is hardly eating. We are spending evenings and nights trying to get him to drink again, as he is not eating we need to get as many calories as possible into him.

It is now 2 months since Matthews operation, and a very hard two months. We are ending the month more optimistic. We do have a little boy who has a high output, but who manages to hold in all this fluid. We were expecting it to be running out of nappies and down his legs. He can use the potty, and is only using his nappy for urine. This is beyond our wildest dreams. Just need the gut to start working now. He also ends the month on alternate nights of TPN, so three nights a week. He may be more interested in food now?

We also decide to stop allowing Matthew to have the Octeotride injections, and see if it makes any difference. We need to know that he is going though all this stress for a reason, his output is still high. No one is pleased with our thoughts at this time. We may be wrong, he may need it, only time will tell. We are frightened, but we cannot have him held down three times a day unless it is really worth it.

Lets hope that August is a turning point, and we can be discharged?

June 2010

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 5^th 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 7^th 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 9^th, 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 10^th, 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 15^th 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 18^th 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 19^th 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 20^th 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 21^st, and his surgeon says his bottom is perfect! At least that is something! On the 22^nd 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 27^th 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 28^th 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.