So Harry's sickness returned and with it several visits to LGI. Harry had completed his radiotherapy and so I said to Harry, well this week we have a hospital free week, apart from maybe a platelet transfusion. How wrong I was and famous last words! Monday brought a trip to LGI as Harry vomited his NG tube out in the night. Whilst there Harry had his bloods tested as thought, might as well and so cancelled the community nursing team's visit on the Tuesday. Yep Harry did need a platelet transfusion, but we only knew this late Monday, so yep, back to LGI Tuesday am for more platelets. Well I kept telling Harry he had a nice afternoon ahead of him and we had arranged to see some friends. However, when we got to the park, not only did Harry have a tummy ache, but the heavens opened! We went to a friends house, but upon not being there long, Harry vomited and brought up his NG tube again! I have to say I felt v.v.v.v.v.v. fed up.com! It was bad enough visiting LGI 2 days in a row, but to have to visit there 2 times in a day was quite frankly deeply depressing. But it had to be done. PAul picked Callum up from nursery and I took Harry to LGI. I felt utter despair that Harry was vomiting so frequently followed by frequent episodes of diahrroea, which actually meant Harry's nutritional intake was virtually zero! I discussed this with the nurses, but nobody seemed bothered and quite frankly had no empathy or understand the gravity of my despair over my rapidly thinning Harry. I was told, well the side efffects were expected and would be over in a week or so, at most. However, when you are deaing with your child on a 24 hour basis, this time frame feels like eternity. I wanted Harrry to be reviewed by a doctor whilst at LGI, but I was told I could be waiting some time, the ward was busy and I felt if we stayed I would have just bawled my eyes out or had a complete tantrum myself that nobody was listening to me or understood what it is actually like to live 24/7 with this god awful disease, this though was no good for anybody. The nurses seemed to think it was as simple as putting Harry on his feed 5 hours on 1 hour off, but when we are in LGI so frequently this is impossible and when his tube comes out, the whole feeding regime promptly stops. In the night when Harry is sick, we stop his feed and I don't apologise for needing sleep and not setting my alarm to get up an hour later to turn the feed back on, so if we have 3 hours between Harry waking the feed stays off. WE are up several times a night with Harry, so we can't be up any more. That is why being in hospital has its advantages at times, as at least a nurse can supervise his feeds and medicines, whilst I sleep, or try to inbetween his vomiting and diahrroea. I have to try and survive to support my family and the cooking, washing etc is still there and paul tries to continue to work. So in total Harry seems to take about 250 calories a day in feed, eats nothing else, drinks very little and vomits and passes nutrition out of his bottom too. Thus, my calculation of almost zero nutrition, leadig to an evaporating Harry!
So we go home and think Wednesday is another day! Alas at Granny and Grandads in the afternoon, yep Harry vomits, and yep his tube comes out! Another trip to LGI. However, upon ringing the ward I ask to speak the nurse in charge and ask for a doctor to review Harry before we leave. I take a suitcase in case they keep Harry in too.
Harry's bloods are taken as well as his tube being repassed and we wait and wait to see a doctor, whom finally sees us around 10 pm, we explain Harry's history and he recommends some new drugs, that are promptly stopped the next day by another doctor! We stay overnight and Thursday we spend all day waiting to see the dietician. We see another consultant, whom decides Harry looks better than when he last saw him during high dose chemo, I disagree though! Although admit the parental view will be different. I explained that the responsibility we feel looking after Harry at home is great. I explain that when he was poorly with high dose chemo, he was put on an intravenous feed and I thought that should happen again, as his nutritional intake is zero. The consultant wasn't taken with this idea, as the side effects for Harry should soon subside. However, I felt that soon there would be nothing left of Harry. Nobody seemed to really get the gravity of how much weight Harry had lost in 2 weeks, which was 1/2 stone. He has never lost this much weight in all of his treatment. The medics banged on about Harry's immunty being low after high dose chemo and how we should not let him go to nursery, mix with large amounts of people, for fear he would pick up an infection, however if Harry loses more weight, then surely he becomes very vulnerable to picking up infections and his frailty means he does not have the ability to fight infections again.
We eventually see a dietician covering for our usual one whom, was on holiday. She spends a while with me,trying to understand Harry's situation and I explain about his significant weight loss. I feel grateful that someone is sitting down and listening to me. Harry is measued on the percentiless used to monitor children's height and weight. He is nearly at the 91st percentile for his height, but has dropped all the way to the 25 th perccentile for his weight. He used to be on the 75 th percentile and so the difference bewteen these ratios is great. The dietican would support Harry going into intravenous feeds as of the next day, however, we discuss Harry together with the nurse in charge. We finally agree to try Harry on his original feed overnight which has more calories in it. We had switched him over to a thinner lower calorie feed, to reduce sicknes and his tube coming out, but alas this had not had tthe desired effect. Therefore we agree that Harry should stay in another night to see how he manages on his original feed. Thereby, at least a few more calories are going into Harry. We would review Harry the following day as to whether to move onto te intravenous feed. The dietician was off the next day though, but left her home number if they needed to contact her.
Harry, takes the feed and vomits just twice in the night. It was very evident that nobody knew what to do with Harry. They could not increase his anti sickness medication, as he was on the maximum, there seemed no where to go to allevaite the side effects. This felt very disconcerting. At the beginning of radiotherapy, we learnt about the side effects, but got told generally medication could be given to alleviate them. However, Harry had tried different medication to no real effect.
I had a discussion with the nurse in charge with the ward, re a plan. The other, factor in all of this was the impending temporary closure of ward 31 for a week of cleaning. Half the ward was moving to ward 41. This is the ward Harry was on for surgery in April. A very noisy, sprawling ward. Beds are removed for parents in the day time, no drinks are alowed by the bedside, only drinks are to be consumed away from your child in the kitchen, which is small and busy, providing a space for about 40 families to use! There is a little hitler support worker who will shout at you if she sees you carrying a drink out of the kitchen and has the ability to make you feel age 2 again! Harry was in a single room, with our own toilet on ward 31. As diahrroea, was a major issue, sharing a toilet which was quite a walk away from the beds on 41, became very unappealinng and was a big factor in our grand plan. What I found highly amusing though, was that the nurses in charge had not even been up to 41 to check it out. When I was saying that there were 6 to a bay and no dividing doors, Neil the nurse in charge thought I was exagerating, but no! Later, when another nurse came back from visiting the ward, she said it was everything I had said. Just a long way from tthe comforts of ward 31, where there are only about 16 patients max on the ward and max of 4 to a spacios bay, with a door to close off noise from the other bays and corridor! As said in previous blogs in April, ward 31 is gold standard and the other paediatric wards strive to make this standard! Sad that oncology and Cystic Fibrosis have the best standard of wards downstairs. Think there is a 5 year plan for 41 to make the gold standard.
Going back to Harry's nutritional intake, to put Harry on an intravenous feed meant staying for the week on ward 41. This would be in no way relaxing for Harry. I remembered due to the noise last time, that Harry strugggled to get to sleep and being fatigued already, a relaxing environement was necessary. Really as a result, I agree to pursue the higher calorie feed, to try and get Harrry on the feed as many hours during a 24 hour period as necessary and to contact the ward if I felt things were again at breaking point. Between going home that Friday, another doctor reviewed Harry and felt concerned about Harry's lack of intake of fluids. She came back later and informed the nurse that he needed 800mls a day! Then the nurse came with 50ml syringes to get as much fluid down him as possible! This seemed bizarre, from nobody being bothered, to suddenly forcing fluid down Harry's NG tube. My immediate fear was that this would make Harry vomit more! Also within, 4 hours, his feed was turned up an extra 10ml an hour! Again bizarre, as in the past the dietician had advised only 5 ml daily rises! In a way I felt being in hospital was not acheiving anything and I now felt bullied to get more fluid into him. The ward was in chaos as everything was being boxed up to move it out for cleaning. I knew in the circumstances going home was right. At 3.30pm we found out Harry needed a platelet transfusion as his blood results came through. These were ordered and and I was sure we would be home for teatime, but no, these did not arrive till 8.30 pm, we ended up going to ward 41, albeit briefly, butby being there it reiterated why we needed to go home. We finally arrived home at 11.20pm!!!! Paul had gone to work and as planned, mum and dad had Callum to stay the night. So with Harry in bed, home alone! It felt very strange and lonely.
So the weekend. Paul took Saturday night off work, with the hope of going onto work Sunday night. We really tried getting Harry on his feed, but constantly had to stop the feed as Harry either vomited or had a tummy ache and then diahrroea. Sunday afternoon came and Harry really wanted to go to Granny and Grandads. whilst I took Callum swimming. Harry had fallen a seep on the sofa and Paul took him whilst we were out. However, my parents have never known him to sit there in so much silence, clearly very poorly.
Callum and I had a lovely time at the swimming pool. It was great to have fun with one of my boys. Callum is really coming on with his swimming and shouts to anybody in ear shot, 'look at me!' He really missed me and said I had left him last wednesday, as I could not pick him up from nursrey as I was in hospital with Harry. He feels very left out at times, and this reflects on his attention seeking behaviour at times. What I have failed to mention thus far though is that Callum is in pants and has actually had very few accidents and mostly does a poo on the toilet too! He was very ready for going into big boy pants and has for a while done wees on the toilet, so the progression has been quite easy, though we are still very proud of him! Though he knows he gets a sweet if he wees, so seeing as that is the way to Callum's heart, then he does more wees on the toilet!!!!
Not long after our return from swimming, Harry wants Granny and Grandad to bring him home. Harry had a tummy ache and once homme, vomited and yep, his tube had come up again! So distressing for all of us! I drive Harry to LGI, we are passed from one ward to another due to the closure of ward 41, we get the tube passed quickly. Nobody was bothered about Harry, Think that was his 8 th tube in 2 weeks! He just can't not have them, as he can't tolerate his medicines any other way, there are too many of them and he won't eat. Paul couldn't go to work again on Sunday as we were back into the evenng and well into Paul's shift. Goood job they are understanding!
So bank holiday Monday and Paul's official day off. We had plans to see friends, but Harry was too, unwell, so these were sadly cancelled. Harry slept most of the morning on the sofa. We try to get out on such a rainy day and head to Paul's parents. Life doesn't get any easier as both boys cling to me and won't let anyone do anything for them. They get so jealous of each other at the moment. Harry seemed in an incredible bad way, not interested in playing with any toys, very, very sad to watch.
I decide to contact the hospital with regards getting Harry reviewed by the dietician on Tuesday. Again we have to cancel plans for a lovely day out, the plan was to go on a Candleighters trip to RAF Linon on Ouse. The Mcmillan nurse rings me late morning as she is trying to speak to Harry's consultant re, any way of managing Harry's constant sickness and diahrroea. I wait all day for a phone call, only to be told to try the original anti sickness drugs that Harry was on. I had asked for Harry to be put finally on an intravenous feed and you can tell how desparate I am as ward 41 is the last place I want to be. However, an intravenous feed would not be granted, as Harry should begin to feel better.
Well its Wednesday today, Harry has had a few doses of the old medication. It has stopped him vomiting so much, but instead of vomitting he seems to have an almost permanent tummy ache and feeling that he is going to be sick. Therefore the chance of getting his feed on today has been minimal. How can I put it on when he is telling me he is feeling sick! I think actually vomiting made him at least feel better for a time after. Harry did request some grapes at teatime, and it was lovely to see him eat a couple, made me think we were turning a corner, plus he was wanting to drink milk and water. Yey, I thought how fabulous, until at 8 pm Harry vomited and yep his tube came out! I was all for rushing Harry back to LGI, but Harry had his bloods taken today by the community nurses and I knew this afternoon that he needed a platelet transfusion. I'd arranged to get that done tomorrow after Harry's radiotherapy review at Jimmy's. I knew to repass his tube, he would need platelets first and these would need to be ordered. If I took Harry he wouldn't be home probably before midnight. Harry was so tired, it just seemed too crawl to take him. Therefore, he now has no NG tube, which means no feed till lunch time tomorrow and no medicines.
Utter despair continues. We have no life, just an existence. An existence to sit next to Harry, who has such huge attachments to me, I feel school is never going to happen. No real service input to support us. I have asked for a continuing care reassessment, the head nurse whom visited this a.m. still thinks we have no chance of reaching the decision support tool crieria. I looked at the framework yesterday and mentioned that in certain cases the criteria does not always need to be met, but a different argument can be made to get funding. The nurse informed me that this wouldn't be looked at in Leeds due to lack of funding and staffing. I said this was not right, but basically I should acccept this. She admits Cancer falls between service provision,but won't help us fight for a single bean. Now I know why I am always late out of my office, cos I try and fight for people to get the best service for their needs. I don't give a dam that there is no money in the pot. If for my service users I see a need, then I see it as my job to put the best argument down for services and haggle, even if that in some cases has meant applying to funding panel 3 times in a row to get funding for a service, that I feel is invaluable to a family.
Sadly, this is health we are dealing with, not social services and I don't have someone who wants to fight for me, but is a yes, sir, no sir person. Probably why she is head of the nursing team!
I also hate people coming imto my home and decciding its their position to tell my children not to winge and generally repremand them!h As she told Harry. He was going on, but I tried to explain, that when he gets into situations whereby he is frightened and concerned of what is happening, he seems to chant that he wants something. At the hospital it was about going to the farm. I think when you have no control over your situation, you try and create control and that often can be, to be demanding. I have seen it often enough in the clientele I deal with at work. However, this nurse has no compassion or empathy, but after every visit from her I feel like a failed parent, whom has kids up the wall! Yes, Callum had a tantrum as I had said I would take him to nursery. I hadn't realised that the nurse wanted to complete a full reassessment whilst she was there, otherwise I would have gone for the alternative 2pm appt she offered, rather than the 9a.m. one. Then Callum would have been at nursery. So, Paul took a screaming Callum to nursery. Again, confirming to her my apparent lack of skill at parenting! I want to shout at her, I do try and tell her how hard it is deaing with all this and she just replied that she is sure it is. But no, she has noooooo idea quite how hard this all is.
So we are at hospital thurs for a radiotherapy review and Friday for a review with Harry's consultant.
Fun, laughter, happiness evades us and in its place a dull aching feeling of utter despair and and sadness. Harry looks like a kid from a concentration camp. If I stripped him and photographed him and put the pictures on TV, money would poor in, as it does on comic relief day, when they show kids with there ribs and shoulder blades sticking out. The definition of the knee caps being too apparent to be comfortable to look at without wincing. Well that is Harry and it feels no one cares, no one, not even God at the moment, as why is Harry still vomitting! Paul and I feel if this goes on then Harry will die. I asked the Mcmillan nurse yesterday how thin you needed to be, before the organs pack in! Well, we will see, the story ends one way, lets just hope we can grab some happiness soon, before our whole family is destroyed by this disease. This is no life for any one of us!