To say that the last week has been stressful would be the understatement of the year.
We as planned ,went to Southampton Hospital last Tuesday for Tyler's operation, it didn't start well as when we got to the ward the clerk asked what we were there for ! A nurse did actually know that we were coming but not what for.Due to bed shortage we were told that we were in a room not normally used and that we would only be there for that night. When we enquired where we were going we were told that it was unknown and we might not find out until Tyler was in recovery. This would be extremely upsetting for anyone but particularly vulnerable patients, they need to know what the plan is and that their family know where to find them. After a visit from one of the Matron's (Natasha our guardian angel), a plan was agreed which allowed Tyler to know what was happening, this greatly reassured us both and I was pleased that I would not be wandering around Ston hospital like a bag lady.
Luckily I had taken plenty of Tyler's medication into hospital as the Doctor didn't book him in until around 10pm, this was following a 4pm arrival time. He hadn't read Tyler's notes and just asked us to explain why he was there, this meant that he was unable to answer any of our questions, he was also a tad careless with some paperwork which a lesser person might have had something to say about.
Following this less than auspicious start we hoped that everything would now run smoothly, I am sure that you can guess that it didn't! The following day started well, The Dr and all relevant staff had seen Tyler by 9am and as he was the only person on the list we simply had to wait for the porter. To our surprise the Dr came back a little later to say that they were missing some of the equipment needed for the operation. You can imagine our feelings at this point, we were advised that a hunt would be undertaken in the hospital and if needed a courier would be dispatched with the equipment. We never really got to the bottom of why the equipment wasn't checked the day before, we were told we would hear more at 12 noon. After a nervous wait the Surgeon popped up and said that the kit was on the way. By this time Tyler is naturally getting a bit fed up as he is nil by mouth, we were all becoming anxious and stressed as the time went on . Some hours later the surgeon came back and said the kit still wasn't there and due to the complexity of the operation he didn't really want to start it much later. Following further discussion it was agreed that the operation was no longer going to take place that day, initially he suggested we come back another time soon, after we explained that this just wasn't acceptable it was agreed that it would take place the next day. The cost to the NHS must have been immense a empty theatre, a whole surgical team on stand by and a courier bill to be paid, the emotional impact it had on us as a family is immeasurable. Tyler as ever was a star and just wanted to eat, so following a very expensive trip to Marks and Spencers at least he was comfortable. As a side issue why are the shops so much more expensive than their own branches on the high street.
The next day again started off smoothly and we had a chance to chat more to the surgeon, he explained that the procedure was rare on patients with a brain tumour and asked if he could video Tyler for training purposes, this was immediately agreed to as Tyler always wants to help others if he can. The purpose of this operation was to reduce a tremor which shook the whole of the left side of Tyler's body, there aren't really the words to explain just how awful the tremor was, made worse by the fact that Tyler is left handed. It meant that for the last year he couldn't go to college ,socialise or do much other than be on his Ipad on a bed in the lounge. The tremor was so severe that it was scarring his back where he tried to control it, therefore you can imagine just how much he wanted this operation.
Thursday seemed to drag on for ever and I cant thank the clic team Beth, Liz and Jo , along with Natasha, and and Ryan for popping up to check that I was ok. Eventually the call came that I could go down to recovery to see Tyler and Jo came with me. When I saw him and the fact that he was lying there still I burst into tears and I wasn't the only one with tears in my eyes, particularly after the surgeon showed the pre surgery video, it was incredibly emotional .
The surgery had been incredibly painful for Tyler which as a mum was really hard to hear, we knew that he had to be awake for some of it but we never dreamt that he would be in pain, this is from a young man with an incredibly high pain threshold and someone who never complains. However he was chatting away with the nurses and making them all laugh, many of them knew him from one of his previous 25 operations, he also stands out with his bright green hair. I have the utmost respect for the talent and ability demonstrated by the surgeon and the belief that Tyler should have a chance of a tremor free life, we cant thank him enough for that .
The surgery was more complex than I think we understood and the effects on Tyler were not insignificant, however the hospital seemed very keen for him to go home, which was his wish to. It was only the physio who said that she didn't think Tyler's mobility was up to stairs which I completely agreed with. It was agreed that we could go if he slept downstairs, for those of you that know Tyler Mmmmmmm?
Shortly after this I noticed that his arm was swelling up around the area's that had had tape on them, it quite quickly spread and became painful. The nurse checked then the nurse practitioner, SHO and Registrar , by this time we had reached Tea Time , and it was decided that it needed to be treated with antibiotics . We knew from experience that it would take hours to get the medication and we were facing up to o a 2 our drive to get home, by this time Tyler was feeling very unwell.
I hadn't ordered Tyler any dinner in the morning as I thought that we would be going home. When I realised that it was likely we would still be there I liaised with the catering rep and asked for a meal to be ordered. I simply couldn't make him understand what was needed and a nurse had to step in , however no meal ever turned up. This is one of the reasons that I would never leave him alone in hospital, I need to know that he will have medication, fluid and food . No one would have realised that he didn't have a meal and he wouldn't tell anyone, how many other patients suffer like this due to inability or capability to communicate, this scares me beyond belief. In this day and age can people really go hungry in hospital, this isn't an isolated incident ,several times I have had to prompt a meal being ordered or request a jug of water.
As a compromise we agreed that we would spend the night in Clic house which is in the hospital car park, meaning I could run back over to the ward when the meds were ready, my husband had to literally carry Tyler upstairs to bed. He didn't want to eat or drink just sleep, alone with him that night for the first time in a while I felt scared . He really didn't seem well and I simply didn't know if I could get him down the stairs into his wheelchair and back to the ward if I needed to . It is so hard as a parent to watch your child suffer and to not to be able to help them.
The next day Tyler didn't really seem much better and struggle to pet Bonnie, the therapy dog who he loves to bits(and her mum Karen of course, the kindness of family, new friends and old is what keeps me going sometimes). I just didn't know if we should go home or go back to the ward, but Tyler was desperate to go home so we agreed that we would ring for advice should he get any worse. Once home he just collapsed into his own bed and slept.
Being ill over a weekend can be quite scary and many of your support workers work Mon-Friday and there is a lack of senior staff present. We have had a really bad experience of a weekend admission and we swore unless it was life or death we wouldn't let that happen again .It was due to this that when Tyler was showing signs of possible shunt issues on Sunday night that we did everything we could to wait until the next day. I think that as the parent of a seriously ill child you become so in tune with them that you know instinctively when they need medical treatment. Tyler also knows this himself as much as he says he is not going back to hospital when things become crucial he agrees.
There was quite a lot of relief when it was Monday morning and people were about again!! His wonderful Snowdrop nurse came out and it seemed to be that the antibiotics had started to kick in . There are a few bits that we have to monitor for the next few days but we have GP/Nurse visits organised. It would be so much more reassuring if there was more cover for the weekend and evenings , sometimes you just need someone to talk things over with.
So at the moment Tyler is home but is going to need intensive physio/OT and we will see how things go, but this week as he has metal clips in place its just about rest and being at home. I apologise for the length of this blog but wanted to share our experiences in case it can help others, or simply put us in touch with others in similar situations who might just want to chat.
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