It is really strange, all that Spidey Sense with me on Monday. Along side that, I posted it here and my Mum called me about 2 minutes later as she just happened to look there as I posted. Paul's Mum called on Tuesday morning to ask if Wills was OK as she had a feeling yesterday that things were not right and had just looked at the blog to see if there was anything to let her know if all was well or not. How very strange, Mum and both Grannies (at opposite ends of the country) feeling the Spidey Sense that all was not well - spooky! It must be the time of year
William's bloods show his HB is OKish (OK for him) but he is neutropenic, meaning that he does not have enough white cells to fight infection. This is usually an indication of something going on but, for now, his infection markers are OK. He seems OK in himself, apart from gas, tummy aches and a very very sore bottom. We just need to keep a close eye on things.
Wednesday, October 31, 2007
Monday, October 29, 2007
Spirals of unease
I have been feeling really uneasy about Wills all day. His play specialist came this morning and remarked on how pale he is. I agreed and she said, with much concern, that he looked a funny, horrible colour - grey really. She was right. He soon picked up but things don't seem right and I can't really put my finger on what it is. He doesn't have a fever. We took his routine bloods and cultures from his line so we will see if there is anything going on. He may just be very anaemic and need a blood transfusion. I hope so really because that will explain things and a blood transfusion will make things a lot better. He is really gassy at the moment and having a lot of pain and lots of bile draining from his stomach. He is clearly feeling yukky and this may have a lot to do with how pale he is. His nappies are pretty spectacular too!
I had a lovely run but started to think too much about Wills and what may happen. This helped to feed my sense of unease and upset. Occasionally, I get into a spiral where I feel nervous about things and then think that is must be due to some maternal intuition so worry even more. Today has been a bit like that. I have William on his monitor tonight. I'm sure all will be well and I will feel much better tomorrow.
I had a lovely run but started to think too much about Wills and what may happen. This helped to feed my sense of unease and upset. Occasionally, I get into a spiral where I feel nervous about things and then think that is must be due to some maternal intuition so worry even more. Today has been a bit like that. I have William on his monitor tonight. I'm sure all will be well and I will feel much better tomorrow.
Sunday, October 28, 2007
The extra hour
So, what did you do with it? I had planned to get up and do William's IV drugs as if there was no extra hour, so at yesterday's 6am/today's 5am. I then planned to go out and run and be back by the time everyone else was busying around getting ready. Did that happen...er...no. Instead, my alarm went off at 5 but I switched it onto doze and ended up giving William his drugs at today's 7am - so an hour late if a normal day, now 2 hours late!
Oh well, it has been a very hectic couple of weeks. Paul has been singing in Birmingham most evenings, getting back in the early hours of the morning. Of course, that has made him very tired. It has also left me doing everything for Wills both late at night and early in the morning, making me tired too. We obviously needed the extra hour of sleep and i can get my run in later.
I have just realised that the hour is going to mess up all William's timings. The biggest impact will be on his TPN. It should stop at 2 but, of course, willl stop at 1 today - just as I am on the field finishing the football session. Not the best place for aseptic procedures! It is the last day of his IV antibiotics today - hooray!!! Now we have to keep everything crossed that the little blighters in his line have well and truley gone. He has been having a few low grade fevers over the last couple of days. Probably all due to winter viruses but we are really hoping the bugs won't come back. Our biggest fear is the yeast and fungal infections he often seems to get in his line after having domestos style IVs to kill the bacteria. A few nervy days of watching for signs and symptoms are ahead of us!
Oh well, it has been a very hectic couple of weeks. Paul has been singing in Birmingham most evenings, getting back in the early hours of the morning. Of course, that has made him very tired. It has also left me doing everything for Wills both late at night and early in the morning, making me tired too. We obviously needed the extra hour of sleep and i can get my run in later.
I have just realised that the hour is going to mess up all William's timings. The biggest impact will be on his TPN. It should stop at 2 but, of course, willl stop at 1 today - just as I am on the field finishing the football session. Not the best place for aseptic procedures! It is the last day of his IV antibiotics today - hooray!!! Now we have to keep everything crossed that the little blighters in his line have well and truley gone. He has been having a few low grade fevers over the last couple of days. Probably all due to winter viruses but we are really hoping the bugs won't come back. Our biggest fear is the yeast and fungal infections he often seems to get in his line after having domestos style IVs to kill the bacteria. A few nervy days of watching for signs and symptoms are ahead of us!
Friday, October 26, 2007
Half Term
The pictures show
1. ALl the medical stuff and nappies that arrived on Monday - what on earth am I supposed to do with all of that? It is a months supply of things we need for William and is totally filling our little "lean to" I did have plans for that to be all arty and bohemian when I bought this house...
2. Ellie arriving home from Honey Pot (Hope would not be photographed!)
3. William attached to his ECG. All smiles but he has been having a very uncomfortable week this week with lots of windy and colic. I am very sorry for the large hole in the ozone layer above Croydon that has appeared this week! We will be without a car from Monday so should be able to do some carbon offsetting.
The last few days have been absolutely crazy.
The girls came back from the "Honey Pot" holiday in the New Forest, on Tuesday, having had a fantastic time. They went to a theme park, a country park, an otter sanctuary, had a halloween party, a cook out...they even had clothes stall where they could choose from donated clothing - all for free. They came home with treats and things they had made. The idea is that this is a respite break for children who need a break from home for various reasons. The timing was great for Hope and Ellie with William having just been very poorly again. He is still on IV antibiotics so we have been unable to have any big days out this half term. It was great they had this instead. They will remain members of the "Honey Pot Club" until they are 12 (not long for Hope) and will have newsetters, a Christmas party, play bus visits and a weekend at the house in the New Forest every year. They so deserve this and I have loved hearing all about it. There is a bit of sadness too as I would much rather we could do more as a family.
We have tried to make the best of half term within our constaints. William had his 24 hour ECG on Wednesday - Thursday so the appointments to put it on and take it off munched up the mornings. We wondered around town and went out for lunch on Wednesday. Yesterday, William's Granny came and we baked and made things out of salt dough. We will be painting them later today.
All of William's activities and visitors stop for half term and he is getting very fed up being stuck in his chair on the TPN until 2 each day. Next week, he begins his "driving lessons" on his electric chair. That will give him a great lease of life as he will, at last, be mobile on his TPN His walking is getting more and more weak and wobbly too so the chair is going to be fantastic.
Wednesday, October 17, 2007
A good night's sleep then back to normal (I hope)
YAY, we got home today Wills is much better but we will still be doing the IV antibiotics for the next 12 days. I get really nervous doing his TPN after such a nasty line infection. The rate he goes downhill is so so scary and it takes a while to get the scene out of your head. Of course, being mindful of infection risk is important but you really need to stike a balance. Wills tends to get infections from inside his intestines that translocate into his lymphatic system and then settle into his line. It is good to know that our IV technique is not introducing bugs but worrying at the same time as we can do nothing to control William's gut bugs. His intestines don't move properly so bugs settle and breed. His recurrent infections are causing cause for concern, not least because he is developing a nasty habbit of getting septic shock every time!
His heart murmur is, thankfully, nothing to worry about. It was just because he was so ill. However, the irregular rythmn he seems to get from time to time is a bit more concerning. It may be that his neurological condition is affecting his heart. I was really upset to hear this. However, it sees that any impact his condition is, or may have, on his heart, is much more easily fixed than the intestinal failure he already has. He is going to have a 24 hour ECG over the next 2 weeks. If this reveals that his heart rate becomes too irratic, he will be assessed for a pacemaker. Strange isn't it. You can fix neurological failure of the heart to behave normally but there is little that can be done if the intestines fail.
Oh well, a good nights sleep and all will begin to settle back to normal tomorrow.
His heart murmur is, thankfully, nothing to worry about. It was just because he was so ill. However, the irregular rythmn he seems to get from time to time is a bit more concerning. It may be that his neurological condition is affecting his heart. I was really upset to hear this. However, it sees that any impact his condition is, or may have, on his heart, is much more easily fixed than the intestinal failure he already has. He is going to have a 24 hour ECG over the next 2 weeks. If this reveals that his heart rate becomes too irratic, he will be assessed for a pacemaker. Strange isn't it. You can fix neurological failure of the heart to behave normally but there is little that can be done if the intestines fail.
Oh well, a good nights sleep and all will begin to settle back to normal tomorrow.
Saturday, October 13, 2007
Here we go again!
Today should have been the start of the cross country season and I was looking forward to our first team league race and hoping to spend yesterday evening sorting my kit and changing my spikes from 12 to 9mm ones, bake some muffins for the girls after the race etc...
Instead, William, once again did his speciality of well to ill in life threatening measures in 0-60 seconds! It was all very stressful. The ambulance service and A and E were incredibly busy and William was not given the right code from the offset. He needed to be foot down and into resus but it took ages to get an ambulance for him (Hope and Ellie had been picked up and gone before it arrived!) and, when it did, Paul beat it to the hospital! We arrived to find no room in rescus and no doctor immediately able to see him. The triage nurse was not a paediatric nurse and thought TPN was a gastrostomy feed (which is not uncommon and forgivable as it is pretty specialised). She kept thinking his infection was on his gastrostomy site - which would not have been so worrying. Maybe the ambulance crew misunderstood too, hence their dithering. When she eventually did his obs, his temp was above 40 degrees and his heart rate 167! He was losing consciousness and his lips were white. It was very scary. The doctor came, A and E doctor, not a paediatrician and, understandably, wanted William's whole history. I just wanted to see someone who knew him and would see how ill he was. When the paeds reg appeared, and was someone who knows him - thank the Lord - she could see at once how ill William was and was furious that she had not been called down before and that the ambulance had not called in to get her down waiting. She had him up on the ward within 15 minutes so we could take bloods and start the antibiotics in a more controlled environment. I have never seen A and E in such a state of carnage. It was frightening when William was so ill.
It was 2 am before I got to bed in the hospital after we being confident William was picking up enough to leave him to get the things we needed for the night , have something to eat (I had just made a yummy chilli for tea when all this happened). Paul had a stint at the hospital this afternoon and I came home to sort out the girls, see Mum and Dad and to tidy and clean the house. The local hospital is close enough to come home for a couple of hours when William has gone to sleep. We usually get into such a mess after some frantic packing and coming and going of stuff each day. It makes such a difference to come home and relax in a clean and tidy house. I now have some yummy smelling apple, spice and walnut muffins in the oven. A huge contrast to yesterday evening!
William has picked up really well today. The tests have confirmed that he does have a line infection and he is responding well to the antibiotics. His medical examinations have revealed a heart murmur though. This is a new thing and we are not sure at the moment if it is anything to worry about or not. He is due to be seeing his local consultant on Thursday and so, while he is in hospital, they will do an ECG and heart echo. One concern is that he had a nasty fungal/yeast infection in his line in August. There is always a risk of spores getting into the heart valves. There is also a chance that line infections have caused inflammation in the heart valves. It may be a feature of his syndrome or a neurological issue and, of course, it could just be an innocent murmur. We will soon find out and, in the meantime, we have learned not to worry too much about things to do with Wills until we know we have to.
Instead, William, once again did his speciality of well to ill in life threatening measures in 0-60 seconds! It was all very stressful. The ambulance service and A and E were incredibly busy and William was not given the right code from the offset. He needed to be foot down and into resus but it took ages to get an ambulance for him (Hope and Ellie had been picked up and gone before it arrived!) and, when it did, Paul beat it to the hospital! We arrived to find no room in rescus and no doctor immediately able to see him. The triage nurse was not a paediatric nurse and thought TPN was a gastrostomy feed (which is not uncommon and forgivable as it is pretty specialised). She kept thinking his infection was on his gastrostomy site - which would not have been so worrying. Maybe the ambulance crew misunderstood too, hence their dithering. When she eventually did his obs, his temp was above 40 degrees and his heart rate 167! He was losing consciousness and his lips were white. It was very scary. The doctor came, A and E doctor, not a paediatrician and, understandably, wanted William's whole history. I just wanted to see someone who knew him and would see how ill he was. When the paeds reg appeared, and was someone who knows him - thank the Lord - she could see at once how ill William was and was furious that she had not been called down before and that the ambulance had not called in to get her down waiting. She had him up on the ward within 15 minutes so we could take bloods and start the antibiotics in a more controlled environment. I have never seen A and E in such a state of carnage. It was frightening when William was so ill.
It was 2 am before I got to bed in the hospital after we being confident William was picking up enough to leave him to get the things we needed for the night , have something to eat (I had just made a yummy chilli for tea when all this happened). Paul had a stint at the hospital this afternoon and I came home to sort out the girls, see Mum and Dad and to tidy and clean the house. The local hospital is close enough to come home for a couple of hours when William has gone to sleep. We usually get into such a mess after some frantic packing and coming and going of stuff each day. It makes such a difference to come home and relax in a clean and tidy house. I now have some yummy smelling apple, spice and walnut muffins in the oven. A huge contrast to yesterday evening!
William has picked up really well today. The tests have confirmed that he does have a line infection and he is responding well to the antibiotics. His medical examinations have revealed a heart murmur though. This is a new thing and we are not sure at the moment if it is anything to worry about or not. He is due to be seeing his local consultant on Thursday and so, while he is in hospital, they will do an ECG and heart echo. One concern is that he had a nasty fungal/yeast infection in his line in August. There is always a risk of spores getting into the heart valves. There is also a chance that line infections have caused inflammation in the heart valves. It may be a feature of his syndrome or a neurological issue and, of course, it could just be an innocent murmur. We will soon find out and, in the meantime, we have learned not to worry too much about things to do with Wills until we know we have to.
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