Alans Mri scan results

Firstly i would like to update you on Alan's surgery, his operation was a success, and he slowly recovered from it, with him being put to sleep with Gas because they could not get a vein in his hand or arm, it irritated his lungs a lot and he had a awful cough, he had 2 weeks worth of IVS to try and keep any bugs at bay and he will have that every 3 months now.

They have also put him on the brown steroid inhaler as a preventer he has been very wheezy lately .

Now i updated last month that we were waiting on MRI results, we got a call a few weeks ago to ask me to go up to hospital they wanted to talk to me, they told me that they had found fluid at the back of his brain and a mass at the top of his nick, they could not see properly so they needed to do a scan of Al ans spine, what a two weeks it was we had surgery one week and the scan the following and obviously we were worried out our minds. We went for the scan but they did not say a thing, only that the results would be available in a few days.Alan was so so brave it took 2hrs to do the scan and he had to lie very still. We waited a week and no news, so last Friday i could not take the wait anymore, i rang the hospital, our nurse called Yorkhill and they said the results were available but the neurologist had not looked at it, so she was emailing him, Monday was the bank holiday so there was nothing but on tuesday the hospital rang to ask if we could go up on Friday the 3rd, so of course we agreed.

We went and the neurologist told us that alan had a chiari 1 malformation, with a Syrinx.

This means for Alan, that the part that joins his brain and spinal column has a malformation and part of his brain is through the hole, the part that controls his movement, it is so tight that it has formed a syrinx, which is a build up of fluid on his spinal cord, they are referring him to a specialist hospital in glasgow for him to have surgery on his brain and spinal cord, we are shocked and are very very worried, The headaches he has been having is a sign of this condition, but if they dont do the operation it could leave alan paralysed and we do not want that at all.He already has more than enough to deal with and now all this.

He said to me last night he is sick of hospitals, but there is nothing i can do to stop this

Please keep him in your thoughts.

Alan's IV'S

What a week we have had with worry. We saw the psychologist on Friday so she has helped us to try and deal with the stress we are feeling, I'm not really sure if its working for me. I cant seem to sleep that well Alan is on my mind all the time.

York hill called on Friday to ask if Alan could come to see the professor on Friday but he is having surgery on Thursday and they were not so keen. So we have to wait till a week on Friday which is the 21st May at 9.45, they are injecting a liquid into him during the scan so they can see whats going on, our Dr says it shows up all his blood vessels and things, they never done anything like that the last time. This is causing me to worry even more, i just want it to be over and want to know what we are dealing with.

Alan has been coughing a lot over the last few days, his throat is sore and his nose is too.

We were at hospital today, and they put Alan's line in, we also discussed Alan's operation which is happening on Thursday, I'm a little apprehensive about his having a general anesthetic but i know he needs to have this done. i thought i would let you see just how much medicine it takes for 2 weeks worth of IV'S to keep Alan well, when you see it all sitting out its a fair amount.

Alans Results

We got a call yesterday for us to go up to the hospital today after we dropped alan off at school. Dr wanted to discuss alans MRI scan results.


My husband was working today and i said its ok i will be ok myself.BIG MISTAKE! The Dr and nurse were waiting for me, they took me to a room and the nurse asked if i wanted a cup of tea, that itself set alarm bells ringing.

They told me the mri, showed up some fluid at the back part of his brain, and a mass at the top of his spine but the mri stopped there and they dont know what it is or at least they are not saying. we have to see the neurologist in Glasgow and another mri of his head and spine. Im out my mind with worry.

He is also having 2 weeks of IVS starting on Tuesday and his operation is on thursday.

For now its a waiting game till the hospital get back to us.

Sickness Bug

Alan went to bed on Thursday night he was complaining of a sore tummy, so i gave him some calpol and he very quickly fell asleep.I was awoken at 11.45 with Alan shouting, i ran through and he had been sick absolutely everywhere. I got Big Alan up to was him down and i got to work in stripping his bed and cleaning up the mess.He was sooo upset. We took him in beside us and he managed to dose off, but it was not for long at all. He jumped shouting he was going to be sick, he ran to the toilet this time. That went on all night the poor wee soul.
In the morning the sickness had stopped but he still felt really sick. With him being diabetic now and us having to check his sugars when he is eating i was beginning to panic because he was not eating and his sugars were really high.I rang the ward and the nurse told me not to panic because when a diabetic is ill their sugars can still be high, so that put my mind at ease a bit.
He lay in my bed all day just taking sips of water, but by the Saturday he was beginning to feel a good bit better thank goodness.

We are having a try at growing some fruit and veg in our garden we have strawberries in and pea pods, Alan is very keen. He has his own watering can and his special pair of gloves. Its lovely to see him doing something a little different that he is so enjoying.

More Bad News

We got a call from Alan's doctor yesterday to tell us Alan has developed cf relates diabetes, and he requires insulin to control it. Just when you think nothing else can go wrong! Alan has had such a run of bad luck lately and this is such a big setback to him, the poor wee mite. Alan seems to take things in his stride but last night he was upset at the thought of having to inject himself and if I'm totally truthful I'm struggling with it all too.
On a plus side postpals have been a godsend to us, Alan has received so much lovely letters and that makes him feel special and loved so to everyone who sends to Alan you have my heartfelt thanks and gratitude.

Scan

Alan had his MRI scan, he was a superstar! He was very brave, he took his DVD with him and got to watch it whilst he was inside the machine.The machine was very noisy indeed Big Alan and i both got in with him and we got to sit at the top of the machine so he could see us in a little mirror. Results will be available in 2 weeks time so we will have to wait and see.
When we got out the hospital we took Alan to toys r us he got a remote control robot who he called Robbie. He loves it. It has an alarm on it if you walk past it is makes a siren noise shouts intruder, intruder Alan is so impressed. He has it set up at his bedroom door so if his sisters go past it goes off!

We also received a letter yesterday. Alan's surgery on his bottom for his prolapse is happening on the 13Th May, so its not so long to wait. Here's hoping it all goes well. I get so worried when he is having a general anesthetic but i will put a brave face on so he does not worry.

Easter

We had a really quiet Easter, the kids had a great day and made up the crafts they were sent from postpals. we had a very quiet bank holiday, unfortunately Alan was working, so it was me and the kids we went to the coffee shop in town and had lunch which was really nice.
I have been monitoring Alan's sugars over the weekend, they have been extremely high 14.2 being the highest, so the nurse was out today and he has to have another glucose tolerance test.
We also got a call today from yorkhill hospital to ask if Alan can go for a ct scan tomorrow at 3 so we are going there tomorrow for that, hopefully they will have some answers from it, then his MRI scan on the 17th.
I will post tomorrow and update.