The start to the month is not a good one, Matthew’s sodium levels start to take a dip yet again. By 2nd 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 5th, 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 8th 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 14th 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 15th 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 21st 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 24th 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?