Hooray, we are home. For a while at least anyway as we are scheduled to go back in for a while in August but we get to enjoy a week or so at home first. Wills still has a bit of infection left so is on IV antibiotics and is still not quite himself. We are having to keep a very close eye and not have an oxygen tank set at 15 litres with a non re-breather mask in the corner of the living room in case we ever get a day like that again.
The last couple of days have been crazily busy was we have caught up with our lives as they were before last Wednesday. For Wills, this has meant visits from his physio, bringing the splints we were about to go and collect when he decided, rather dramatically, that he would rather not go to physio on that day and a visit from his OT and a rep to look at a more supportive chair for his ever slumping posture. She also came with the news that we are getting a temporary powered chair, while we wait for them to find the perfect Willsmobile. This may arrive next week so I am just taking a break from a major clutter clear to make some room for him to drive around the house, destroying the paintwork.
Our house is not at all designed for this so the OT is making a case to the next panel for us to have major house alterations. All the doors need to be widened, we need a lift from the dining room into the room above, currently the girls' room that will then become William's room, the bathroom will turn into a wet room (very sad about this as I love my baths!) and we will have an attic room built for the girls. I will make sure there is some kind of partition as they are a nightmare sharing a room at the moment. All that is going to be pretty major. We will get a grant towards the majority of the cost. It will be a about a year before the process reaches the stage of being ready to begin work. Wills will then be around 4 so he will be so happy to have complete independence around the house :-) We are still not completely sure of his disease prognosis but most of those who work with him expect him to be a full time wheelchair user in the foreseeable future. He doesn't do much walking around at the moment, preferring to lie on the floor and play and crawl at times. The trouble is, when he is ill, he deteriorates generally at a quicker rate and never quite picks up.
You never know what life will throw at you! In 2004, my stable life with two healthy daughters was rocked to the core when I gave birth to William, a little boy with complex needs. Life was never the same again. We've come through living in hospitals, a small bowel transplant and coming to terms with Asperger's Syndrome and I'm finding life all the richer for it.
Saturday, July 21, 2007
Tuesday, July 17, 2007
Home tomorrow!
Wills is coming home tomorrow :-) He will need a further 2 weeks on IV antibiotics but we can do that at home. He is going into Chelsea and Westminster on August 6th for further tests, including his barium follow through and further nerve conduction studies and tests on his mucles. We will also see if we can get his intestines to just tolerate a tiny, tiny amount of something to help stop bacterial overgrowth and more scary line infections. He may well have his illeostomy during this time as well so we could be in for the month (or longer...). Hope and Ellie will be with their Dad and then onto Grandma (where would we be without Grandma!) so I won't have to split myself in two as much as usual. I asked out nurse specialist if we could time his admission then, not least because the girls and I are off to see luverly Lee in Joseph on Thursday next week and Ellie has her birthday the following Sunday and Wills will be 3 on Monday. This will be the first birthday at home with his family (she say's keeping everything crossed!). We plan to make the best of the next 2 weeks as it could well be the full extent of our summer holidays together so will will go out and do loads of exciting things, working it all out around the IV antibiotics. I am not ashamed to wash my hands, roll my sleeves up and do his IVs in a cafe somewhere. You do get some odd looks though!
So, we are trying to settle down and get back into normality. Things feel a bit strange though, I think because we went through a lot this time and very nearly lost our Wills. It is very hard to get back to normal after things like this. It kind of feels a bit surreal at the moment. You have to balance living and enjoying life but being vigilant at the same time. We and our community nursing team are sorting out high flow, portable oxygen tanks ready with re-breathing masks to be at the ready at home and in William's playschool in case of similar emergencies.
Very sadly, I learned today that another of the "gastro kids" on TPN at Chelsea died very suddenly at the end of last week. He was the same age as Wills and may well have died in very similar circumstances that William was in last Wednesday, they have yet to work out what was the cause. I feel very sad that, while we are heaving a big sigh of relief and trying to put the images of Wills so ill out of our minds and get on with life, another family are going through a time that is the worst of our fears. We know that, one day, we may well have a different outcome when William gets so ill. Life for these children really is so fragile. My thoughts and prayers go out to this family at this time.
So, we are trying to settle down and get back into normality. Things feel a bit strange though, I think because we went through a lot this time and very nearly lost our Wills. It is very hard to get back to normal after things like this. It kind of feels a bit surreal at the moment. You have to balance living and enjoying life but being vigilant at the same time. We and our community nursing team are sorting out high flow, portable oxygen tanks ready with re-breathing masks to be at the ready at home and in William's playschool in case of similar emergencies.
Very sadly, I learned today that another of the "gastro kids" on TPN at Chelsea died very suddenly at the end of last week. He was the same age as Wills and may well have died in very similar circumstances that William was in last Wednesday, they have yet to work out what was the cause. I feel very sad that, while we are heaving a big sigh of relief and trying to put the images of Wills so ill out of our minds and get on with life, another family are going through a time that is the worst of our fears. We know that, one day, we may well have a different outcome when William gets so ill. Life for these children really is so fragile. My thoughts and prayers go out to this family at this time.
Sunday, July 15, 2007
Quick update while home to do the washing
Wills is still in hospital, fighting a very nasty infection. He is having good days and bad days, still having very high temperatures and is washed out. The infection was caused by bugs in his intestines getting into his blood and causing septacemia, and, of course, settling in his hickman line to cause a line infection. He has now had two such infections that have been classed as "life threatening" as well as numerous others that were pretty serious as well. There is, naturally, some cause for concern about this so we are off to our "Fulham Pad" at Chelsea and Westminser Hospital on Tuesday.
Wills will have a barium follow through study to make sure there are no obstructions and blockages in his gut, and to see just how slow things are at the moment. After that, the team will discuss if an illeostomy will help drain some of the fluid that is growing these bugs (bringing a bit of his bowel out through the skin to drain). They also plan to see if they can get Wills to tolerate a tiny bit of feed into his intestines. At the moment, he is unable to tolerate anything. If we can get him to tolerate a little bit it will help his intestines to normalise a bit and prevent this build up of gut bacteria that is leaking into his blood. We have no idea if he will cope with this. We will just have to see. It will not be enough to feed him and he will still be dependent on TPN for the time being.
If this does not work, there is a chance he will be assessed at Birmingham for intestinal transplant. One near fatal infection could be a one off but two puts him into the bracked of "TPN complications" which coud make him eligable to go on the list. However, we still have th complication that it seems Wills has a degenerative neurological condition and that would be contraindicative of a transplant. There are still so many complicated questions and issues to sort. The infection seems to have bought the issue of transplants to a head again but, in the same conversation, William's local consultant explained how it seems Wills has problems with the junctions between his muscles and nervous system. The impulses are not being sent to the muscles properly and this is likely to be degenerative as the nerves then die. His tests results and clinical picture seems to support this at the moment. So, in the next few weeks or so we need to establish whether his intestinesfunction at all, whether an illeostomy will help, whether he needs to be assessed for transplant now or if he can still safely get by on TPN for a while before this becomes urgent and, of course, whether his neurological condition is a degenerative one. It is strange, we muddle on along and then, all of a sudden things come to a head for a while, then we muddle along again, often just as we were before. We are just about to get into the coming to a head stage for a while. It is a shame, we have been in this stage every single Summer since Wills was born. While everyone else seems to be planning their holidays, our family is once again separated with Wills and me in hospital.
Wills will have a barium follow through study to make sure there are no obstructions and blockages in his gut, and to see just how slow things are at the moment. After that, the team will discuss if an illeostomy will help drain some of the fluid that is growing these bugs (bringing a bit of his bowel out through the skin to drain). They also plan to see if they can get Wills to tolerate a tiny bit of feed into his intestines. At the moment, he is unable to tolerate anything. If we can get him to tolerate a little bit it will help his intestines to normalise a bit and prevent this build up of gut bacteria that is leaking into his blood. We have no idea if he will cope with this. We will just have to see. It will not be enough to feed him and he will still be dependent on TPN for the time being.
If this does not work, there is a chance he will be assessed at Birmingham for intestinal transplant. One near fatal infection could be a one off but two puts him into the bracked of "TPN complications" which coud make him eligable to go on the list. However, we still have th complication that it seems Wills has a degenerative neurological condition and that would be contraindicative of a transplant. There are still so many complicated questions and issues to sort. The infection seems to have bought the issue of transplants to a head again but, in the same conversation, William's local consultant explained how it seems Wills has problems with the junctions between his muscles and nervous system. The impulses are not being sent to the muscles properly and this is likely to be degenerative as the nerves then die. His tests results and clinical picture seems to support this at the moment. So, in the next few weeks or so we need to establish whether his intestinesfunction at all, whether an illeostomy will help, whether he needs to be assessed for transplant now or if he can still safely get by on TPN for a while before this becomes urgent and, of course, whether his neurological condition is a degenerative one. It is strange, we muddle on along and then, all of a sudden things come to a head for a while, then we muddle along again, often just as we were before. We are just about to get into the coming to a head stage for a while. It is a shame, we have been in this stage every single Summer since Wills was born. While everyone else seems to be planning their holidays, our family is once again separated with Wills and me in hospital.
Thursday, July 12, 2007
A very scary day
Wills got another line infection yesterday and ended up with septic shock. The speed in which Wills went down yesterday was terrifying. He was playing with his tank engines very happily. He went over to his Dad for a cuddle but was still there for a couple of minutes so we began to worry if he was OK. I went to get the thermometer and, by the time I came back in the room, Wills was blue, semi conscious and shaking violently and Paul was on his mobile for an ambulance. This in under 5 minutes from playing! I ran for the oxygen and blasted it up to the top. Thankfully, the ambulance was there very quickly. They took one look at him and got him straight in and were off with full blues and twos, radioing into the hospital that it was a life threatening situation. The docs were waiting in the ambulance bay and Wills was given resucitation with high flow oygen, drugs, antibiotics and fluids. They were debating calling a CATS team to get him into a paeds intensive care when he began to respond. Good old Wills, a real fighter! It is so so frightening to think that his life can be snuffed out so suddenly. This is not the first time this has happened and he has had a full respiratory arrest. He was on the way to another one this time. We know the signs though and reacted quickly with lots of oxygen. We could have been on a bus, in a park, in a shop - anywhere where we don't have everything to hand though and I don't know what could happen then. Worse still is the thought that this could happen overnight and we may not see. For this reason, Wills is now monitored overnight as his pulse rate speeds towards 200 when this happens and the machine will alarm and let us know. All this because the line that the TPN goes into to feed him is a huge infection risk. Of course, the TPN then feeds the bugs as well as feeding Wills, resulting in instant septacemia. Yesterday, he experienced septic shock. This is a very dangerous position to be in. It is very frightening that we could loose Wills from these infections very suddenly at any time. It is something we try not to think about but have to remain vigilent for situations like yesterday.
There were no beds for Wills in our local or in Chelsea and Westminster so we ended up in St Helliers. They were so lovely there but it is not familiar and it felt pretty lonely when Paul left as I was not at home, or in a place where we are all known.
I am now trying to catch up with everything else that is happening and make sure Hope and Ellie are sorted for the weekend and I have the things I need, as well as the little things and treats I use to make myself feel better in hospital with Wills. They have identified the bug and he should be on the right IV antibiotics tomorrow. Once he has settled, we will go home and continue the treatment ourselves.
There were no beds for Wills in our local or in Chelsea and Westminster so we ended up in St Helliers. They were so lovely there but it is not familiar and it felt pretty lonely when Paul left as I was not at home, or in a place where we are all known.
I am now trying to catch up with everything else that is happening and make sure Hope and Ellie are sorted for the weekend and I have the things I need, as well as the little things and treats I use to make myself feel better in hospital with Wills. They have identified the bug and he should be on the right IV antibiotics tomorrow. Once he has settled, we will go home and continue the treatment ourselves.
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