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Here you can read what my treatment is like and, hopefully,
the effect it has on me. I will also tell you about other important things in my life.
FROM
14 MARCH 2011 THE LATEST NEWS IS AVAILABLE UNDER THIS BANNER.
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7 February 2012
It looks as
if BT have finally pulled the plug on Ryan's web site. So this will be the only way of continuing his Diary.
Ryan has had a mixed time since the last entry.
He has not been sleeping too well at night BUT he has still been giving us a few smiles and appears to be putting on a bit
of weight.
We are trying a new CCTV
system out which we hope will give Rachel and Bob a bit more sleep at night. It sounds a warning if Ryan moves around so they
will know if he is awake. At the moment this new system, which is wireless so the monitor can move around the house with them,
is conflicting with their Internet system.
Anyone
know how to change the band on their wireless hub?
3 February 2012
An average night with Ryan requiring
a lot of suction. The ERT was aborted as his veins have had enough of needles being inserted! So, because his Portacath is
useless, something different has to be tried in order that he may continue with his treatment.Perhaps a Hickman
catheter.
2 February 2012
A quiet few days.
Ryan has been generally lethargic and very "twitchy". Last night he hardly slept at all and needed constant suctioning.
Still getting some smiles though.
REMINDER :As
I have changed my broadband supplier, this web site might dissappear into the ether! I will continue with Ryan's Diary
at http://www.ryanseebers.blogspot.com
30 January 2012
A generally
quiet time for Ryan. He is still very "twitchy" from time to time but is pain free for long periods. He gave me
the best and longest smile for weeks yesterday, which was a real bonus.
The priority is still to keep him pain free and
get some weight on.
27 January 2012
We were not able to
give Ryan his ERT today as the cannula, only inserted yesterday, was bent! We hope he can have it next Monday.
Ryan continues
to be relatively pain free but gets a bit agitated from time to time. He gave us some brief but broad smiles which made us
all happy.
He is up to 830ml of feed and we hope this puts back some of the weight he has lost, as he is very thin.
PLEASE NOTE:As
I have changed my broadband supplier, this web site might dissappear into the ether! I will continue with Ryan's Diary
at http://www.ryanseebers.blogspot.com/
25 January 2012
A disturbed night, sleepy morning and not too bad early afternoon,
with a bit of discomfort. However, through it all I got some big smiles and a great cuddle.
27 January 2012
We were not able to give
Ryan his ERT today because his cannula, only fitted yesterday,was bent. So it looks like Monday is the target now.
Ryan
continues to be relitively pain free although still a bit agitated. Lots of brief but broad smiles today made us all happy.
He is still tolerating his feed and is up to 830ml. The aim is to get some flesh back on him as he is very thin.
24
January 2012
No change today. Ryan has been fairly quiet, a bit of pain and a few smiles. we continue to try to build
him up from the 24kg he now weighs.
22 January 2012
Ryan had a good
first night at Martin House and was quite alert and gave me the odd smile when I arrived at 2.30.
However, at about
four o'clock he deteriorated and was in a lot of discomfort. In the end the contents of his tummy had to be aspirated,
as the pain relief was not being absorbed. The various medications were then re-administered. When I left at 6.30, he was
slightly better. I hope he has a good night!
I wonder that, if some of the medication had been given via IV's
instead of his tummy, it would have avoided some of the pain! He is back home tomorrow afternoon and I will report again in
the evening.
20 January 2012
Ryan, after a reasonably
quiet night, was fairly relaxed for his ERT this morning. He was pain free and even managed a few half smiles. He is now in
Martin House for three days to give Rachel and Bob a chance to rest up. I will be there on Sunday and write the diary up when
I get home.
18 January 2012
One good night and one
not so good with a sleepy day yesterday. Ryan had 500ml of feed yesterday and appears to be tolerating it; this is a good
sign. So far the new pain control regime is working most of the time.
16 January 2012
No change. A small smile for Mum but non for me.
14 January
2012
Another day of no change - not better but not worse and best of all, no apparent real pain. Ryan was well enough
to have his hair cut but refused to smile for the photo!
I think Rachel misinformed me on the feed rate. I believe
it was to be increased at 1ml per hour, not day. So, he is up to 25ml per hour with no apparent problems so far.
Click here to see a video worth watching. Thanks to Ger for letting me know about it.
12 January 2012
A quiet couple of
days with Ryan continuing to make slow progress. He is on 2ml of feed every hour and appears to be tolerating it. This will
be increased by 1ml per day. Normal intake should be around 1000ml - so there is a long way to go!
10 January 2012
The slow progress
continues. Keep everything crossed for Ryan!
8 January 2012
As in my last entry, not
a particularly good time for Ryan but not as bad as it has been recently. The new pain management plan is in its early stages
and on tonight's evidence, appears to be slowly kicking in. Well done so far Rachel and the medical team.
6 January 2012
Not
a paticularly good night, or day for that matter. Ryan has at least had his ERT. He is on a new pain management plan and was
quite relaxed a few minutes ago. (5pm)
5
January2012
Home again and not a good night. However, not all bad news. Ryan can now have IV's at home and
in addition, is having some medication via a supositary. This means his tummy is having a break from the cocktail of medications
etc. This evening he is starting to look a bit better and even managed a smile or two.
3 January 2012
Ryan had another, well needed, good nights sleep. Since
then he has been quite good, a bit agitated but in no obvious pain. He has been re-hydrated and looks better for it. He has
however lost 11 pounds in a week!
We hope to get him home tomorrow. The problem then is that we have to start putting
his medications into his tummy, as we can't do IV's. Thanks to the fact that his second Portacath does not now work
(and very rarely did!) this is the only option. Rachel is trying to obtain training to do IV's.
Message for John Hudson. Stop accessing this web site.
2 January 2012
I spoke too soon yesterday!
Ryan had an aufull afternoon; he was in agony for hours and in the end we took him to Harrogate hospital to get some fluid
into him as he was dehydrated. He eventually fell asleep at 11pm. He was still asleep at 11am today.
We wait to see if
a new antibiotic will help. In the meantime at least some of his various medications can be given via IV's, taking some
pressure off his tummy where most of his problems appear to be.
It is hard to see him in such great pain. He looks so
thin now and the stress in his face shows how much he is hurting.
1 January 2012
Ryan had quite a good day yesterday
and even managed to give me a wan smile. We were hoping this would mean a good night but the pain returned and it was not
to be.
He is is not too bad so far this morning.
30 December 2011
Not a brilliant night with just four hours sleep. ERP proceeded as normal but Ryan was unsettled and there was no glimmer
of a smile. Not a good day.
29 December 2011
Ryan has had a miserable few days. Yesterday, as he was in great pain, he at last had the scan. However, due to the
excessive amount of wind, the radiologist was unable to see if what he was looking for was there!
Last night he was awake
most of the night, as were Rachel and Bob. This morning I rang Dr Mike at Martin House to see if there was anything he could
do to help. He very kindly came out and spent a lot of time working out what to do.We hope his recommendations help to settle
Ryan, who was still awake when I left at 12 o'clock.
26 December 2011
The hospital doctor made an arrangement that,
should Ryan experience extreme pain over the Christmas holiday, the "on call" radiologist would come in and scan
his tummy to see if he could spot the cause. Well, he did experience the pain and the wonderful radiologist refused to come
in! When we contacted the "on call" consultant, he did not appear to understand the arrangement and suggested we
admit Ryan to hospital. When the point of this was queried he again appeared to to have no idea of the point of the arrangement
made. He also refused to give his name!
We took Ryan to hospital in the hope that someone could get the radiologist
in. Both the nurse and the duty doctor agreed that a scan was a good idea and contacted the "on call" consultant
who eventually came in to see Ryan. The net result was no scan and an appointment made to have one on 29th - again missing
the point that the scan should take place when Ryan was in extreme pain. Of interest was the fact that the consultant eventually
apologised for his manner on the phone and admitted he knew nothing about MPS!
So, Ryan went through several hours
of pain for nothing. Had we known that no scan was to take place we would have tried to relieve the pain when it started.
Today, surprise surprise, the hospital rang to say the radiologist would scan Ryan at 10am. This offer was politely refused
as Ryan is not in great pain at the moment.
23 December 2011
I arrived this morning
to find a relaxed Ryan and he was fit enough to receive his treatment. Nurse Katie did a great cannulation and nurse Paula
looked after him thereafter. In fact it was so easy that Ryan went back to sleep for most of the time. Two days to Christmas
- keep it up Ryan.
22 December 2011
A bad night and not
a good day - a lot of pain and thankfully, some sleep. I have just been looking at Ryan's "cool dude" photograph
and I'm afraid you would not recognise him today. We have to wait until 9 o'clock tomorrow morning to see if he is
fit enough to receive his ERT treatment. If he does we still have a problem as, due to his Potacath being "knackered",
we have to try and and cannulate him. This is not easy these days.
21 December 2011
An up and down couple of days for Ryan. We take one day at a time and today is not a bad one. We hope it continues into
tomorrow and beyond.
18 December 2011
At last a bit of good news. Ryan had
a settled night and has been quite happy today. A new regime of pain relief- little and often, combined with the same
for his milk, which is also now warmed, is working so far.
16 December 2011
An horrific night and not much better
day for Ryan. He has been in a lot of pain - the worst I have witnessed since he left hospital in Manchester.
To make
matters worse, his Portacath would not accept his ERT and it had to be aborted. This probably means a trip to Manchester to
sort it out.
It has been nothing but trouble since it was fitted in Manchester on 23 January this year and follows the
trouble they had fitting the original one in March 2007.
15 December 2011
Hooray! Home again at last. Today he seems
happy to be at home and is relatively relaxed. We are not getting too excited - one day at a time.
13 December 2011
Another uncomfortable
night, with Ryan somehow finding the only gap in the side rails and falling out of bed. Luckily he does not appear to
have injured himself.
Yesterday we managed to give him his ERT. He slept through most of the four hours it took but woke
up for a few minutes a few times and managed a big smile.
After the treatment we took him for a scan to locate the suspected
DVT. However, nothing was found so we will continue to treat him as if there is one, as his leg is so swollen.
If
he can tolerate an increase in his milk we will be able to take him home later this week.
10 December 2011
Two bad nights with not much better days. Ryan now has Streptococcal Pneumonia AND a suspected DVT in one of his legs.
8 December 2011
Another good nights sleep and not a bad day. So far the plan is working!
6 December 2011
A good night at last and Ryan is still asleep now
at 12 o'clock. Rachel has talked to various Consultants, Nurses and Doctors and they have come up with a new pain
control system and medication to try to sort out his tummy problems. A more positive day, let's hope it continues.
5 December 2011
Another bad night with
two canula and one trachy change to add to Ryan's discomfort. He is not any better today and we are waiting for the Gastro
team in Manchester to advise on further treatment.
4 December 2011
Ryan is still in hospital with Bob sleeping (I use the word in its loosest sense as he is in the same narrow bed to
stop Ryan falling out!) at night and Rachel doing the day shift. I relieved her for a few hours yesterday afternoon. When
I arrived Ryan was still asleep but he soon woke up and was clearly uncomfortable. It seemed to be a combination of tummy
and secretion problems - he has had two "trachy" changes already. However, when I left, he was sitting on Rachel's
lap giving us some smiles, such a strong and brave boy.I have no idea how long he will stay in Hospital and will visit again
tomorrow.
2
December 2011
The problems continue with Ryan finishing up in Harrogate hospital in the early hours this
morning. He is still in some pain and the contents of his tummy were leaking from his gastro tube. He has at least slept today
but I am concerned about tonight.
30 November 2011
An horrific
night with Ryan in great distress and morphine having no effect. Not much better today and I don't know where we go from
here.It all seems to be gastro related so that appears to rule out Manchester, where the gastro team all but gave up on him.
29 November 2011
A bit better today
with some great smiles this afternoon. I hope they all have a good night.
28 November 2011
No change from the recent pattern. Ryan is still having periods of pain. Last night morphine was the only way of giving
him some relief. Rachel is trying to clear his tummy with metronidazole and see if that helps, as the pain does appear to
be in the tummy.
25 November 2011
After another night of little sleep, Ryan was deemed fit enough for his ERT. As the morning progressed he became progresivley
more settled and by one o'clock he wes smiling and relaxed. This continued for the rest of the day so we were all happy.
24 November 2011
Another bad night. Ryan is sleeping during
the day but when awake, he is still agitated. We still don't know why. If we can get him to revert to night time sleeping,
it would at least help Mum and Dad.
23 November 2011
Still very unsettled. Last night he was awake
from 2am until 7am! He has now done a "poo" and we hope that this may settle him. Some smiles today.
20 November 2011
As I said yesterday, "what a difference a day makes". Ryan was up and in pain all night and only went to sleep
at 12.15 today. When I saw him just before he went to sleep I felt like crying; his eyes were closed and he was rocking from
side to side in pain. A very bad day.
19 November 2011
What a difference a day makes. This morning I arrived to find Ryan sitting in Beckhams Buggy with a big smile
on his face. He was still somewhat agitated but generally happy. He never ceases to amaze me.
18 November 2011
A disturbed night, a lot of discomfort and
a small fit, together with cancellation of Ryan's ERT made for a bad start to Friday. However, he has recovered somewhat
and although not smiling, is a lot better this afternoon - thanks in no small measure to some wonderful care from the Martin
House team. He is staying in again tonight and we will see what tomorrow brings.
17 November 2011
Not a good afternoon
as Ryan was in great pain for long periods. Finally, at 9pm, he has gone to sleep. I hope he has a better night than
last night when he woke up at 4am, again in some pain.
ERT scheduled for tomorrow; let's hope he is fit enough.
16 November 2011
Ryan never reached Manchester yesterday as Rachel and Angela had problems with him and finished up having to do an emergency
"trachy" change on the hard shoulder of the M62. By the time they had finished it was too late for his appointments.
Today he is not too bad. A little agitated and not as smiley as he has been but he looks fairly stress free most of the
time. My next visit is tomorrow.
15 November 2011
Ryan is in Martin House this week to give Mum, Dad and Becky a bit of a break. I went to see him yesterday afternoon
when, from being happy and smiley, he took a turn for the worse. For several hours he was in a lot of pain and the worst I
have seen him for months. Thank God he eventually went to sleep and he was peaceful when I left around 10.
Today he was
a lot better and back to smiling again and being well looked after by his carers. This afternoon he is off to Manchester for
a check up.
We will see what tomorrow brings.
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| We met another of Ryan's Super Carers (Dave) whilst we were there. |
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| Ryan with his new cuddly donkey, which he hardly ever let go! |
12 November 2011
After a few
problems and a "trachy" change, Ryan's treatment went well and there were plenty of smiles. Today we took Ryan
to the Donkey Santury to ride a donkey. He had a great time and was really happy. A good day. See some photos above and below.
10 November 2011
Ryan had a fit last night
after three comparatively good days. ERT due tomorrow and I will report back after he receives it.
7 November 2011
Re-scheduled ERT this morning and Ryan, after a sleepy start, was
on top "smile" form. At one stage he got the (silent) giggles, this for the first time this year. He really is a
remarkable young man. Every time you think he is going down hill, he surprises you with his power of recovery. Keep on surprising
us Ryan - you are inspirational and greatly loved.
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| After his hair cut on Saturday and looking cool! |
4
November 2011
The bad news, Ryan was just coming out of a seizure when I arrived for his ERT this morning. The
good news, he then went to sleep and I got to cuddle him for three hours. New ERT set for Monday morning.
3 November 2011
Ryan has been OK(ish) this week and has had two hours
at Springwater school yesterday and today. Although he has been a bit off colour, he still managed some large smiles, both
for me and Sprinwater staff, when I took him there yesterday. Let's hope he is able to return full time soon as he needs
the mental stimulation and change of environment it gives him.
30 October 2011
Just back from
our regular family dinner. Ryan has had quite a good day and been out on his tricycle with Bob. He gave us a big smile when
we arrived but started to get agitated about an hour before we left at 10pm. It's Bob's turn to sleep with him tonight
and he is hoping it is a good one for both of them!
29 October 2011
A mixed night and Ryan has been asleep all day so far (it's 4pm now).Not good.
28 October 2011
ERT treatment day and as Paula was away, Sitar (sorry if I spelled it incorrectly!) looked after Ryan. She was
just as nice as Paula and Ryan was really taken with her.
Although he is still in some discomfort, he still managed a
few small smiles.
26 October 2011
Ryan is still
suffering from something or other. We think it is his tummy (he has finished his latest treatment without any noticeable improvement)
or it could be an ear infection. The nurse has taken an ear swab and we await the result.
He had an unsettled night last
night and as I write this (at 21.30 hours) he still in some discomfort. It is nothing like as bad as it was in Manchester
but enough to keep the smiles from coming.
The British Library have contacted me and asked if they can include
this web site in their Web Archiving programme. So, it will be available for researchers for decades to come!
22 October 2011
Ryan was lethargic
yesterday, with no smiles whilst I was with him for his ERT. He had a fit at five this morning and Rachel thinks that he is
in pain. The problem is, we have no way of telling what is causing the pain. Not a good day.
19 October 2011
Ryan is of to see the Gastro team in Manchester today. He is in reasonably good form, a bit snotty but a few smiles.
14 October 2011
ERT treatment today and Ryan was VERY sleepy. No obvious pain and some some nice smiles before he dropped off.
12 October 2011
A dissapointing day with Ryan having tummy pains. He
has been lethargic all day and unable to sleep. No smiles either.
9 October 2011
Ryan has had a settled few days and his treatment on
Friday went without a hitch. He was on good form this evening with plenty of smiles. He was sitting with Rebecca when we arrived
and I thought the photo above would be of interest.
5 October 2011
Ryan
has, among his many medications, about eight doses administrated via a nebuliser. This takes around two hours a day and means
he has to be at home when they are administered.
Imagine our joy when those nice people at NARA "The Breathing Charity"
heard about this and provided him with a special nebuliser which is both quicker and portable. This means that his treatments
now take around a third of the time. As it is portable, it also means that we can take it out with us so he can use it
anywhere.
They are a fantastic charity and their details are on our "Links" page.
3
October 2011
The trip to Manchester had a satisfactory outcome in that there was nothing wrong with the Portacath
and thus no need for another one to be fitted. However, it did nothing to make accessing it any less problematical!
Ryan
survived the trip with his normal good humour and is reasonably settled at the moment.
30 September 2011
A problem with Ryan's ERT today. Ever
since the new Portacath was fitted in January there has been trouble in accessing it. As there is now no bleed back,
so it is impossible to know if it is accessed correctly. The only way to be sure is to keep looking to see if the area around
the Portacath starts swelling; as this can take up to an hour, it is not a satisfactory solution.
Anyway, yesterday it
did start swelling and the treatment had to be aborted. Ryan now has to travel to Manchester next Monday to see if they can
sort things out. We just hope that it doesn't mean another operation.
28 Setember 2011
Visited Ryan in Martin House
today and heard that he had a third night of a good nights sleep. I wonder why he doesn't do that at home! He was a bit
quiet and smiles were scarce but he at least looked generally pain free.
25 September 2011
Nothing much to report. Ryan is still on antibiotics for the flu. He is also having coughing fits and we had to give
him oxygen three times on Friday, whilst he was having his ERT. He still managed to give us an occasional smile!
He is
off to Martin House on Monday until Thursday. I will pop in to see him daily.
21 September
2011
Returned from Marrakech (It's fantastic!) to find that Ryan has not been back to school since I left.
He has had a bad cough/cold and also been very "snotty" and requiring a lot of suctioning.This means that Bob and
Rachel are getting even less sleep at night than normal!
I have just been told that Ryan has flu again and is to
go back on to antibiotics. However, he is still managing to smile. He really is a remarkable boy.
15 September 2011
Another small
fit and Ryan is very tired - so no school today. I am away celebrating my 50th wedding anniversary in Marrakesh from tonight.
So, no Ryan updates until 21st.
13 Setember 2011
Ryan spent the morning back at Springwater
school - the first time since February. Apparently he seemed happy to be back but is now a bit tired and resting at
home.
11 September 2011
Just
back from Martin House where Ryan has been for the last three days. He has had two good nights and apart from being snotty,
quiet days with plenty of smiles. As always, he has been well looked after by the fantastic staff. He returns home tomorrow
afternoon and on Tuesday starts school again on a morning only basis to start with.
8
September 2011
Not such good news this morning. Ryan had a big fit on Tuesday, another ane yesterday and two today.
5 September 2011
Ryan was on good form
for our family BBQ last night and whilst not being quite so smiley when I popped in today, he is still much better than when
he first came home from Manchester.
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| Ryan with Oliver, Samuel and Rebecca. |
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| Ryan with Oliver last week. |
2
Setember 2011
A quiet couple of days for Ryan. He has started his antibiotics and so far, is
coping well. Carer Angela took him out for a stroll in his buggy today. Not only does he get fresh air but he also indulges
in his favourite pastime - people watching.
30 August 2011
Ryan
has been to the Butterfly farm today with Samuel and Oliver. When I saw him on his return he looked tired but happy. He has
been diagnosed with Influenza "B" again and will have to go back on antibiotics. The good news is that his tummy
pains appear to have stopped.
I hope to have a photo of Ryan with the boys soon - specially for you Barbara!
27 AUGUST 2011
An
unsettled day today with obvious tummy pains. It's a long time since he had these and we hope it is just a case of constipation.
His friends Samuel and Oliver (http://www.oliverandsamuel.com) are coming tomorrow and we hope he is on good form for them.
25 AUGUST 2011
Just back from a quick visit
to see Ryan this morning.
He was in superb form with an almost permanent smile.
It made my day.
22 August 2011
Ryan is on a roller
coaster at the moment. He had three fits on Saturday but looked terrific at our family BBQ last evening. Not only was he relaxed
and smiley but he had few secretions as well.
20 August 2011
Ryan's treatment went smoothly
yesterday and although he was not smiling much, he seemed to be comfortable. He saw Sarah and Phil on Wednesday and we think
he recognised them but unfortunately, he was not in a big smiley mood.He has had a couple of trips out in his buggy this
week and appears to enjoy the change of scenery.
16
August 2011
Ryan has had a quiet couple of days with a trip to Manchester hospital today. I understand that
they were rather surprised at the progress he has made since he left there. Sarah and Phil arrive from Ireland today. They
will see Ryan tomorrow and it will be interesting to see if he remembers them.
The photo under is the one I mentioned
on the 3rd August. It has taken that long to transfer it to my computer!
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| The day we never thought we would see again! |
13 AUGUST 2011
Oops, I spoke too soon.
Yesterday afternoon Ryan had a major seizure. Today he is understandably sleepy but in spite of everything, still giving the
odd smile. He is a very strong and brave boy.
12
August 2011
Ryan was on great form for his treatment this morning. Apart from excessive secretions
it was smiles all the way. There was plenty of eye contact and he displayed interest in what was going on around him. Keep
it going Ryan.
8 AUGUST 2011
After yesterday's very smiley day, Ryan had a bad night (from
about 4am) with never ending secretions.Consequently he is rather tired today but otherwise OK.
7
August 2011
Ryan has had a mixed few days with a couple of seizures. However, today he is full of smiles and
taking a lot of interest in what's going on around him.
3 AUGUST 2011
I never thought I would see
the day again but today Ryan had a short trip on his special tricycle. He has also been to town in Beckham's Buggy. I
have a photo but am having trouble transferring it from my phone. Watch this space!
1
August 2011
A couple of reasonably good days. The eye drops seem to be working for a while
after being used. They can only be used four times a day but they are making life easier.
29 JULY 2011
ERT day again and after a good nights sleep Ryan still managed
to sleep through most of the treatment. It was interesting to note that whilst asleep he had few secretions and his eyes did
not irritate him. This changed when he woke up but he was quite smiley and he is definitely stronger, as he can now sit up
without support.
27 JULY 2011
Ryan is a bit better today and carer Dave took him out in his buggy to get some fresh air.
26 JULY 2011
Not good news today. Ryan had a seizure last night
and another smaller one this morning. He is now zonked out from his medication.
24 JULY 2011
No real change to report. Ryan is back to giving us the odd smile.
He is being treated for Hay Fever, to see if that is what is causing the irritation around his eyes and the swollen face.
22 JULY 2011
ERT day today and I arrived to find Ryan asleep after what was a restless night. He soon
woke up and was rather "snotty" but still able to smile.
We then had rather
a traumatic morning. First of all Ryan, who was lying down as he was tired, became extremely agitated. Tristen quickly noticed
that the tissue tucked into his tee shirt to catch the secretions, was blocking his breathing tube. This gave me a real scare
as I had put it there.
Ryan then had two bouts of diarrhea.
We then laid him down again only for him to have a severe sneezing or asthma attack. We had to give him oxygen and also
change his tube in case it was slightly blocked.
The rest
of his treatment proceeded without too much trauma. We did notice however that as his face was swollen,his chin tended to
block his "trachy" and we had to watch that carefully.
Not
a Friday I would like to see again.
21 JULY 2011
No change today.
19 JULY 2011
Just back from Martin
House. Ryan has had a quiet day with not many smiles. Something seems to be irritating him around his eyes again and
as we don't know what it is, it is difficult to treat
He is back home tomorrow and I hope that when I visit in the
afternoon, he has regained his smile.
18 JULY 2011
Ryan is having a sleepy
time of it lately and had a rather large fit today. However, we woke him up at about four and took him out for a walk around
the grounds. He gave us plenty of smiles and looked really relaxed.
Next visit is tomorrow.
15 JULY 2011
Just back from Martin
House where Ryan is settled in and they are making their normal big fuss of him. He was quite happy and generally relaxed.
He did seem to be a bit bothered by, what appeared to be, a pain either behind or between the eyes. We hope the doctor will
have a look at this tomorrow, when we will again call in to see him.
12 JULY 2011
Another mixed day. A poor night with two small fits. A sleepy morning but a great afternoon with plenty of smiles and
a very relaxed look. I wish some of the Manchester Hospital staff could see him now; I don't think they
would believe their eyes.
18 JULY 2011
Ryan has been rather
sleepy these last few days and had a fit again today. However, we put him into his buggy at about four and he woke up and
gave us loads of smiles. We took him for a short walk around the grounds and when I left he was still smiling.
11 JULY 2011
Ryan continues to be much
more alert and is still smiling a lot. He is having small fits in the morning but apart from that continues to amaze us. We
are starting to take him out in his buggy for short spells (weather permitting) and he seems to enjoy it.
He
is back in Martin House on Friday for a few days.
6
JULY 2011
Ryan was a bit blue this morning and a gunged up "tracky", which was changed,
sorted the problem. He is still smiling a lot. He is also sitting up without support much more and also reaching out for toys;
something which has not happened for many months.
3 JULY 2011
What an amazing boy Ryan is. He had a fit this morning but
when we arrived for our usual Sunday family meal, he was full of smiles. In fact, I have not seen him smile as much for many
weeks. We feel that the rehydration plus the reduction in some medication could be paying off.
He is still poorly but
if we can keep him pain free and happy, that is the best we can hope for.
2 JULY 2011
Apologies for the lack of information these last few days. Ryan has had a better time and is fairly settled. We think
it is because he is hydrated and that aspect of his care is now a top priority. He has even had a good couple of nights sleep,
which means Rachel and Bob have also benifited!
28 JUNE 2011
Not a great day for Ryan. He spent most of the time
either awake and agitated or asleep and less agitated. As he is dehydrated he is now receiving extra liquid and he is also
receiving a mineral supplement.
No smiles today but in spite of everything, Ryan is still an amazingly strong boy and
a real fighter.
27 JUNE 2011
Ryan continues to be unsettled and is off to Martin House for
two nights tomorrow. This is so Rachel and Bob can get some much needed sleep.
We did not get to take Ryan out today
as it was much too hot and in any event, he was not really fit enough. He has lost some weight which, I suspect,
is due to his constant diarrhea. I would imagine that this also means he is not getting the full value of his medication,
most of which is given via his tummy..
I will be with him tomorrow so that he has a family face, together with the wonderful
carers, to comfort him.
If he is fit enough, he will also have his ERT before he returns home.
25 JUNE 2011
Back home from his
ERT and Ryan had a rare good nights sleep. He was rather agitated this morning but has been in a deep sleep since. At least
when he is asleep, he is not in pain.
Tomorrow, if the weather forecast is correct and Ryan is OK, we intend to take him
out in his buggy for the first time in nearly six months. It will be a two person job because we have to also take his suction
machine, oxygen and various bit and pieces.
24 June 2011
Ryan continues to be slightly better. Although he is still quite
agitated, he does not appear to have as many tummy pains.
However, he has had a small fit. Also, he does still
suffer from diarrhea big time and he still has difficulty in sleeping all night.
Today he has had his
Enzyme Replacement Therapy at Martin House and we hope this will help him.
The good news is we are still getting a few
smiles..
21 JUNE 2011
Slightly better
today with a few smiles. Will it continue into tomorrow?
19 JUNE 2011
Just come back from our
family BBQ at Rachels, where the news on Ryan is not so good. He was in some distress and not at all happy. He (and Rachel/Bob)
need a good nights sleep.
I hope I have better news next time.
18 JUNE 2011
Martin House came and went
without Ryan having his treatment. This was because he now has a bad ear infection which needs to be treated. I wonder how
much the lack of ERT is contributing to Ryan's current problems!
He continues to be unsettled, particularly in the
late evening around bed time and it is often in the early hours before he settles.
Very few smiles at the moment.
15JUNE 2011
Not
much change from yesterday except, just as I was leaving tonight, he gave me one of his award winning smiles.
Tomorrow
he is back to Martin House because he is having his ERT there on Friday morning. We think his pre-treatment medication last
week made him poorly, So he won't have it this week. And that's why he is in Martin House - just in case he has a
reaction to the ERT and needs a doctor quickly.
14 JUNE 2011
No change. No extreme
pain but no real smiles either. Lets hope for better news tomorrow.
12 JUNE 2011
Ryan is slightly better
today. We are hoping he is on the way back to his 9th June mode!
10 JUNE 2011
I'm afraid it was not
to be. Ryan had a bad night and was in great pain when I called to help with his ERT. Rachel thinks it may have been caused
by his new pre ERT medication. In any event his treatment was cancelled and the only relief Ryan got was from a re-introduction
of morphine.
A sad day.
9 JUNE 2011
Ryan
has had a reasonably good couple of days and we are going for our hat-trick tomorrow. I will be with him for some time, as
I resume my Friday Enzyme Replacement Therapy duties for the first time for about five months. There were a few times
in Manchester when I wondered if I would see this routine again.
So, although things are still far from back to what
was normal for Ryan, he has made some remarkable progress.
If we can just have another day without much discomfort tomorrow,
it would be three consecutively - another milestone.
|
|
| AND LOOKING GOOD WITH AUNTIE SARAH! |
6 JUNE 2011
Having a good day seems to take it out of Ryan. He was in
a lot of pain yesterday and had a very bad night as well.
The pain he suffers from most appears to be centered around
his tummy and the medication he receives to relieve it does not appear to work all the time.
I hope that some attention
is now given to identifying the cause of the pain as well as treating it. The five months in Manchester didn't find the
cause so perhaps we should now be looking for a new gastroenterologist team to help us.
4 JUNE 2011 Later that day!
All of a sudden Ryan is
very very happy and smiling at everyone!
Such a strong boy. Keep it going Ryan.
4 JUNE 2011
Things are not going too well at the moment. Ryan is having too much discomfort
and generally appears unwell. He has had some more fits and I still worry about Rachel and Bob's ability to cope.
He
is currently on around 12 different medications and treatments, not to mention the constant need to be aware that he
may need suctioning or oxygen. There is no stair lift, so Ryan sleeps on a special bed in the lounge, with whoever sleeps
with him on the sofa!
Yesterday Ryan had a fit and turned blue. If Rachel had not been there and realised that his
trachy was blocked, (she did an emergency trachy change) I think we may have lost him.
Rachel is desperate to keep Ryan
at home and I hope she and Bob, with help from various carers, are enough to give him the 24/7 attention he now needs.
31 May 2011
Ryan had a GREAT day yesterday
but had a couple of short fits. Today he is sleepy but not in pain. Tomorrow he comes home at last.
30 MAY 2011
Ryan
had a bad time Friday night but has had two good nights since. He was fairly settled yesterday with plenty of half smiles
and is, apparently, the same this morning.
His home coming has been delayed until Wednesday, by which time I will have
to buy some more balloons as the Monday lot will have gone down!
27 May 2011
Ryan had a great day on Thursday. Sarah visited and
said that he was alert and smiling and the best she had seen him for months. Today however he is back to being asleep most
of the time but I did get a big smile when he woke up.
Apparently he gets most discomfort around the same time each
evening and they are working on his medication to see if he can be helped at this time.
We are all set for his homecoming
on Monday. His hoist has arrived as has his oxygen supply. We hope it is not too long before his "stair climber"
also arrives.
26 May 2011
I went to see Ryan yesterday but once
again he was asleep and didn't wake up. This was disappointing but at least he was in no pain.
The good news is that
he is coming home on Monday for the first time since February 11th!
The bad news for me is worrying about how Rachel
and Bob are going to cope. They both have bad backs and there is still no stair lift or bath hoist.
But not withstanding
this -
RYAN IS COMING HOME
- something,
at times, we thought we would not see.
23 May 2011
We visited Ryan yesterday
and apart from a few seconds when he opened his eyes and gave me a half smile, he was asleep. This appears to be the norm
at the moment and he does not appear to have a day/night routine.
His medication is being reviewed and I hope to see
an improvement on my next visit on Wednesday.
21 May 2011
Not such good news as Ryan has not been particularly happy for
the last couple of days. However, compared to recent weeks, he is still much better than he was.
I must learn to accept
that he will have good days and bad days. The main thing is that the trend continues towards an improvement.
I am with
Ryan tomorrow evening and will report again on Monday.
|
|
| HAVING A CUDDLE WITH SARAH |
|
|
| AND ANOTHER CUDDLE WITH GRANDMA |
18 May 2011
What a surprise we got last evening. We found Ryan
to be much better than expected and also much better than for many weeks. It's as if he is glad to be back in Martin House,
where he is not restricted to his bed or bed space. Here he is able to move to different rooms and sit down in proper clothes,
on proper chairs and with people who are not in a uniform.
He was on good form and gave one of the carers the biggest
grin I have seen from him for many weeks.
There are still many physical problems to be overcome but, so far, we are off
to a good start mentally.
Ryan took his time going to sleep but he had a peaceful night and a good morning. Both Rachel
and Rebecca are with him 24/7 at present and I am sure that is helping him to settle in.
Fingers, toes and everything
else crossed, that things continue to improve.
17 May 2011
Not a particularly good start for Ryan.
He had three fits last night, one of them being quite a long one. We hope that perhaps they were as a result of all the upheaval
and that he will quickly settle down.
Sarah, Kathie and I are off to see him this evening and I will let you know how
he is tomorrow.
16 May 2011
Ryan has had a mixed time since my last entry BUT tonight
he is at last back in Martin House, where I have just left him looking miles better than he was a few weeks ago. No tubes
attached other than his feeding one which was removed as I left. We just hope that he continues his slow recovery and that
he can then return home.
Thanks to those staff in Manchester who gave him such loving care. You know who you are and
we won't forget you.
13
May 2011
It's just so depressing. Every time we think we are turning the corner we receive more bad
news. I spoke with Rachel yesterday evening and she was looking forward to a good nights sleep, as Ryan was so relaxed. It
was not to be and he had a bad night with lots of pain.
Gastro have today altered his medication and we still wait for
the result of his faeces analysis.
12 May 2011
The antibiotic which Rachel suspected was causing the extreme
tummy pain has been stopped and Ryan has had a much better evening with minimal discomfort. He has also had a haircut and
looks as good as he was before the latest problems started all those weeks ago.
The gastro team are visiting tomorrow
and will, hopefully, have the test results on the blood found in his faeces. If this proves not to be serious it could finish
up being a good week.
11 May 2011
Not such a good report today. Ryan
has been having really bad tummy pains again. Rachel suspects it might be the drug they are using to clear his tracheotomy
infection. Today Rachel did her first changing of a trachy tube, without any problems. As I write this Ryan is apparently
sitting in his buggy and is in a little less pain.
Let's hope for better news tomorrow.
|
|
| Looking at the nurse by the next bed! |
|
|
| Both Ryan and Rachel looking relaxed at last. Note the long hair - not been cut for three months! |
10 May 2011
When I arrived Ryan was sitting in a wheel chair
receiving his Enzyme Replacement Therapy. He looked a lot better than he did on Sunday, with very little dribbling. He was
still having bouts of discomfort which I assume, rightly or wrongly, are linked to his tummy. However, as the day progressed
these diminished and by late afternoon he was looking better than he has for many weeks. When I left he was back in bed looking
totally relaxed. Next ERT scheduled for Monday and we wait to see if Martin House is on for Tuesday/Wednesday.
9 May 2011
An extremely disappointing visit yesterday as we found Ryan was not as well as we had been led to believe. He was
dribbling excessively and rather zombie like. Luckily I had Kathie with me and she asked what drugs he was on. She was disturbed
to find he had been given Risperidone, a drug tried a few years back and very quickly stopped, because of the effect it had
on Ryan.
Whilst we were there Ryan had a fit and two more after we had gone. He is on Carbamazepine, an anti convulsion
drug, and we understand that Risperidone does not necessarily react too well with it. In any event, Rachel is trying to wean
Ryan off drugs and not add new ones to the list. I understand she has now said that there is to be no more Risperidone.
Ryan is now scheduled to go to Martin House early next week.
.
6 May 2011
Nothing extra to report again which is, as I have said
before, good news. Ryan had an Enzyme Replacement session at last and is due another one on Monday. It is hoped that he may
be out next week.
Michael and favourite "cousin" Laura flew over from Ireland for the day to see him and were
pleasantly surprised at his recent progress.
Thanks are due to the many Facebook friends who have sent their good
wishes and prayers.
I am visiting on Sunday and will give a further update then.
5
May 2011
Things continue to give us hope that Ryan will be out of ICU soon. Enzyme Replacement Therapy
is due to be resumed and all being well, Ryan will be moved to Martin House hospice shortly - a ten mile journey instead of
70 and one step nearer home!
Rachel thinks that he is agitated for two reasons. He is being weaned of drugs and all that
goes with that and he is p****d off with being in hospital. If only he could talk and tell us.
4 May 2011
A couple of slightly unsettled nights and OK days.
Rachel is home with a bad back and Bob is back in Manchester.
2 May 2011
Not a bad day again for Ryan. He was a bit agitated
for about half an hour or so just before I left. I thought he was in pain but Rachel thinks he might be suffering withdrawal
symptoms as his drug intake is reduced.
He had a good night off the ventilator but is a bit agitated again today Rachel
is almost immobile, having put her back out lifting Ryan this morning. I am not sure how we are going to get her home because,
if it doesn't improve, she will be of little use in hospital.
There is a meeting on Wednesday to see if Ryan's
next move should be from ICU to Martin House, where he would continue to receive one to one care, or a hospital ward, where
he wouldn't.
The photo below shows Ryan yesterday, looking very alert with his beautiful red blanket, given to him
on his birthday by the Intensive Care staff.
30 April 2011
Nothing extra to report,
which is good news. There is no further improvement BUT no further deterioration either. It is just a matter of waiting to
see if weaning Ryan of as many drugs as possible and increasing his feed is going to be coped with. I am also hoping
that he can start his Enzyme Replacement Therapy again.
So, at the moment it is one step forward and no steps backward!
|
|
| RYAN WATCHING A DVD YESTERDAY. |
28 APRIL 2011
A quiet day for Ryan yesterday but one that was, in the main,
pain free. I felt a bit guilty when I left at about 8pm. For around an hour beforehand I was aware that Ryan wasn't comfortable
and the nurse must have been fed up with my constant requests to suction and aspirate him. None of this stopped the odd tear
rolling down his cheeks. Eventually I pulled back the sheets to see if he needed changing only to find he had his
foot caught in the side rail of the bed. It must have been very painful and it is something we will have to look out for in
future.
Today has been another good day with another small increase in his feed, with no obvious problems. He has also
been off the ventiltor for 10 hours.
All in all, good news but as I have said before - one day at a time - this time
we are not going to be rushed.
26 April 2011
A really good day today with plenty of smiles
and no real problems. We take one day at a time and look forward, hopefully, to a similar day tomorrow.
Last twice Ryan
showed signs of getting better he was shipped out of Intensive Care too quickly with disastrous results. We must make sure
this does not happen again. Although the signs are good he still needs one to one care.
I am with Ryan tomorrow so the
next entry will be on Thursday.
25 April 2011
Ryan had two small fits today, These may well be
because his medication is via his tummy and as he has diarrhea, it is not being fully absorbed. Apart from this he is
fairly settled.
24 APRIL 2011
Another goodish day for Ryan, not quite
as good as on his birthday but a positive sign. We are getting a few more of these and keep hoping that the trend continues.
22 April 2011
HAPPY BIRTHDAY RYAN!
Another goodish day with plenty of eye contact and some smiles. Rachel, Bob and Rebecca
decorated Ryan's bed and he had a cake and presents to look at. Ryan always loved birthdays and we think he enjoyed what
was going on. Some of the staff and parents also gave cards and one nurse designed a poster for him. We hope Ryan continues
the slow progress he is making.
|
|
| Taken with a mobile camera, just missing his smile. |
21 APRIL 2011
Not a bad night and not a bad day today. The gastro man turned
up (no apology for missing yesterday!) and his feed is to be increased. However, this time his tummy is to be regularly checked
to ensure he does not aspirate again.
Ryan has spent a bit of time today in his buggy watching a DVD.
Tomorrow is
his birthday and Rachel, Bob and Rebecca are going to make it as normal as possible - cake, candles, present and singing Happy
Birthday - as Ryan has always enjoyed all this. We hope that he understands what is going on.I'll let you know how it
all goes.
20 April 2011
I am just so ANGRY!
After a rough night on Monday,
Tuesday turned out to be a good day with little pain and quite a bit of eye contact. I took Rachel out in the evening to make
sure she had a "proper" meal. When we returned we found Ryan had been given a Bolus (an extra dose of pain killers)
before following the written instructions to relieve pain. (See Diary entry for 13 April).
Rachel is keen
that Ryan is weaned off as many drugs as quickly as possible so that she can assess his true condition and make the right
decision regarding his future. So, a bolus should be a last resort. From now on they are not to be given without a Sisters
permission.
Back to the story. Rachel asked the nurse to suction Ryan to remove secretions, whilst she aspirated
his tummy to remove any possible wind. Imagine her distress at finding 60ml of his feed apparently undigested. Had the Gastro
team turned up as promised, this would have been discovered earlier. Had Rachel not found this out
it is possible Ryan's feed would have continued and we could have been right back to where we were on 12 March. Have a
look at the 12 March entry - "latest news".
As far as we can see, Ryan has recommenced feed via his tube
without any plan as to how it is to be monitored. I hope none of the Gastro team have a son in Ryan's position receiving
the same level of their care!
I hope you can understand why I am so angry. We want Ryan out of Intensive Care.
IC management presumably want him out too but we continue to be let down by a tiny minority of people.
The
good news is that Ryan had a settled night.
18 April 2011
Kathie and I went to see Ryan yesterday and found
him to be slightly better than on our last visit. He still suffers from secretions and panics if they are not suctioned
out quickly. As it is a hit or miss job so the moments of panic can be long or short.
The good news is that he has no
further tummy pains and that I had my first, small, smile for quite a while. Also, the swelling on his face is further reduced.
Tomorrow he is to be assessed to see if feeding via his gastrostomy can recommence. If it does we will anxiously wait to
see if his tummy pains start again.
. 15 APRIL 2011
I was with Ryan yesterday and he had
well over an hour of secretions in his throat, which were hard to locate and suction out. This caused him to panic and struggle
to breath. Apart from that he had a relatively settled day with no tummy pains. The medical attention was good all day and
I left him, still with a puffy face, sedated but looking relaxed.
Unfortunately it didn't
last and later he had two small fits and had to be sedated at around 4am.
Today his secretions have
been a lot fewer but his tummy pain has returned. This time it is not wind related and Rachel thinks it may be caused
by new antibiotics being introduced to try to clear the infection, still there, in his Portacath.
We are really keen that
all this medication is reduced so that we can assess the true state of Ryan's health. At the moment (it is 10.30) he is
sedated again and comfortable with the puffiness on his face reduced slightly..
13 April 2011
Rachel has phoned and says Ryan has had a much better
day today.
13 APRIL 2011
A pleasant surprise when I arrived at Ryan's
bedside yesterday (with my printed instructions as described in the last diary entry). There by his bed was a set of instructions
just like ours, hanging up for all to see!
Ryan had an unsettled day with six episodes of pain and/or discomfort. Between these
he spent most of his time asleep.I was surprised to find out that that these episodes are not recorded, so there
is no record of their frequency or duration. This would be useful in helping us to judge if there is any improvement. The
swelling on his face has gone down a bit and he can now open his eyes.
The gastro man visited and his parting words were that
someone would perhaps be back next Tuesday - one week away! As part of his problems is tummy related, I would have
thought a visit sooner than that is required..
I mentioned yesterday that it is time we became proactive and I hope that what
we are now doing (and which I must keep to ourselves) will result in better care for Ryan. As I have said many times, the
good work of the many is undone by the bad work of the few.
11 April 2011
The news today really upset me and made Kathie cry. Rachel rang to see how Ryan was and was
told that they were having trouble administering his IV's as he was wriggling around so much. By now everyone looking
after Ryan should know (or should be told when taking over, if they are new to him) that this is a sign of pain and/or distress.
We have now printed instructions as to what should be done when this happens, which we will leave on his bed. He is suffering
enough without this unnecessary distress and we must now start to get proactive on his management. It's such a shame
that all the good care he receives is negated by these continual odd lapses.
9 APRIL 2011
Just
to refresh the memory of the concerned friends and family who use this diary to keep up with Ryan. It was on 23 January that
he had his new Portacath fitted and the 27 January that the stitches were found to have burst, revealing the Portacath for
all to see. I wonder if that is how the infection (which is still there) got in! I also recorded on that date the severe tummy
pains Ryan was experiencing.
So, with the exception of just two weeks, Ryan and Rachel have been in Manchester. In those
two weeks he had two spells in Harrogate hospital, a few days respite care in Martin House and a few days in Leeds General
Infirmary. It is worth remembering that he was sent to Leeds because a doctor at Martin House saw something untoward in an
inspection of his eyes - with the concentration since on his respiratory and stomach troubles, this does not appear to have
been followed up. If it has, I am not aware of it.
So, here we are, with Ryan still poorly, having a swollen face and
unable to open his puffed up eyes, still having the occasional bout of discomfort - some caused by secretions, some by tummy
pains and maybe, some caused by something else. He has had further X rays and a Barium test. I understand that an ICU doctor has been assigned to oversee
his care. This is welcome news and I hope his duties are delegated when he is off duty. I know I keep banging on about co-ordinated
care but I liken Ryan’s care to the coaching staff of the England rugby team. They have different coaches for the various
elements of the game but Martin Johnson is there to pull it all together and make sure that all their efforts complement and
do not conflict with each other.
Finally, Elain and Vicky who both have children with Hunter disease, took Rachel out
on Friday and I understand they all had a great time. Rachel is home this weekend and tomorrow we are having one of our regular
meals together before she goes back to Manchester. However, it will not be the same without Ryan and Bob. It's good to
have her home as she needs a break. I dread to think what would have happened, on some occasions, had she not been there.
In case anyone thinks I am too critical of Ryan's care, I must emphasise again that most of it has been superb and we
have a lot to thank most of the staff for.
7 April 2011
Another disappointing visit yesterday with Ryan
having many spells of discomfort. The positive way of looking at these is that they were in no way as bad as those a few weeks
ago! However, he was put on a ventilator overnight to help with his breathing. We were lucky yesterday in that
Ryan had superb care. A meeting with all concerned with his treatment took place today and several changes for his future
treatment and management were discussed. Amongst other things, his tummy is to be steralised again and some form of medication
to line it introduced. As far as I am concerned, getting the Gastro team to be more interested will be a major step forward.
Rachel continues to keep an eye on everything and is always smiling when Ryan looks at her. She says that she doesn't
want him to see any concern on her face. She has been truly inspirational.
5 APRIL 2011
Ryan is the same today as yesterday. Rachel having to aspirate
him often to try and keep him pain free. The ICU doctor on duty this week seems to be on the ball and getting everyone working
together to sort out Ryan's many problems. On my visit tomorrow I will TRY to ensure this sort of interest and care is
the normal, everyday. Wish me luck, as I don't expect an easy ride!
4 APRIL 2011
Ryan is not great this
morning, still getting tummy aches and wheezing a lot. He has also got a blood clot on the line in his leg. I assume this
might be like a DVT and caused by inactivity; if so, I hope that some physiotherapy might stop this recurring!
Last
evening Ryan was in a lot of pain and Rachel suggested to the nurse that she aspirates him via his gastrostomy, to release
the wind causing the pain. The nurse said that it couldn't be done via a gastrostomy so Rachel showed her how to do it,
including how to ensure air is not pumped back in by priming the tube. If she had not been there I assume Ryan would have
had to put up with a very painful night.
A nice bit of news is that Rachel found a small cake and hand made
card in Ryan's bed space, wishing her a happy mothers day from Ryan. Apparently a Sister had made these for all the mothers
in IT, a lovely gesture.
3 APRIL 2011
Ryan had a peaceful
night last night but not such a brilliant day yesterday, Apparently he was given 80ml too much of "a fluid" and
then given a diuretic to counteract it, as his face was getting puffy. How was this allowed to happen in Intensive Care? I
could also ask why there has been nothing but problems with the new Portacath! There may be a perfectly acceptable answer
to these questions but as I don't know who is co-ordinating his treatment, I don't know who to ask.
After the
meeting on 16 March we were told that someone was co-ordinating Ryan's treatment. After the meeting there was
indeed high profile activly around him. However, for the last two weeks or so we have not seen the co-ordinater. I did ask
a Sister who was now the co-ordinater but she was unable to enlighten me. I intend to find out this week.
Unfortunately,
with all his problems, Ryan has not had any further ERT lately.
I know it may appear that I do nothing but complain at
times but I am extremely protective when it comes to Ryan. Whilst he has indeed received some superb attention and treatment,
there are some areas that give me cause for concern.
|
|
| SHANE, POLICE DOG TRAINEE AND BECKY. |
1 April 2011
No change today. We wait to see if a new Portacath
can be fitted or if we have to rely on antibiotics to "clean" the current one. The intensive treatment he is receiving
may be the cause of his tummy pain and it will be interesting to see if they reduce after the antibiotics stop.
I understood
that various consultants at other hospitals were being contacted to see if they could throw some light on Ryan's condition.
To date there has been no feedback.
Another visit from Vicky was much appreciated by Rachel and on Sunday, Sarah, Bob
and Becky are visiting and taking Rachel out for a Mothers Day treat.
I have deliberately not posted photos of Ryan in
Intensive Care as they are quite distressing. However, I thought you would like to see a photo of Becky with Shane Ritchie
taken when he visited a patient In Martin House when we were there a few weeks ago. He drove all the way up from the
South and back again the same day, just to see the patient who had previously asked to meet him. No publicity, no PR
just him. A really nice man.
31 March 2011
Back from Manchester but with no
better news I'm afraid. I forgot to say in yesterday's entry that Ryan had two more fits on Tuesday night and a temperature
of 40.2. Today I found him generally sleepy but he periodically had short bouts of, what looked to me like, quite bad
pain. Rachel said she didn't know if it was tummy pain or discomfort caused by his tracheotomy. His temperature is back
to normal but his blood pressure is too low.
I understand that the line to his groin is to be removed, as it is a possible
cause of infection. His Portacath may well be removed for the same reason. We are awaiting the results of further blood tests
but in any event a new line must be established. I am not sure how the Influenza B is responding to treatment.
Ryan got
a lot of attention from various medical teams today and we will see what they can come up with to help him.
Thanks are
due to Claire who again travelled up to see Rachel and Ryan the other day. It involves a 6am start and a return home at around
11pm. As she has two Hunter's children of her own, it is an amazing act of friendship and support and very much appreciated
by Rachel.
And so the saga continues. We appear to be no nearer getting Ryan home. He is still in Intensive Care,
where at least we know he is monitored 24/7, thus giving Rachel a chance of some sleep at night.
30 March 2011
Ryan has got Influenza B again AND an infection
in the line to his groin! I, as a layman, fail to understand how these problems keep occurring in an Intensive Care Unit
and hope someone can enlighten me when I visit tomorrow and take over from Bob. I understand that there may also be a problem
with his portacath again and hope that I find this not to be the case!
He has had a sleepy day today with his anti seizure
medication increased. Some eye contact but no smiles.
29 March 2011
A disappointing
visit for me yesterday. Ryan was better than he has been for some time in that we now have eye contact with him. However,
after a good Sunday, he was in pain several times during the day and overnight had two fits and a high temperature.
We had a visit from a pain specialist yesterday who came up with a plan for managing his pain
in future. We were also told that Ryan is to be moved to HDU
when a bed becomes available.
I know I am probably over protective but I have a feeling of déjà vu. Twice Ryan has appeared to be making progress and both times he was shipped out of ICU and returned very quickly.
Whilst he has indeed had superb treatment for his respiratory problems (which
may well have saved his life) and whilst he has, in the main, been very well looked after, we still are no nearer knowing
what is causing his pain.
When he is in pain he thrashes around and could well pull any
of the various tubes out. He can also have a fit at any time. It is for those reasons I feel he should remain in ICU where he has one-to-one nursing care. I dread to think what would happen in other wards if tubes were pulled
out, or he fitted, with no one being aware.
So, it is two steps forward and one step back. I hope whoever is co-ordinating
Ryan's care comes up with a plan to allay my fears.
27 March 2011
Rachel is back in Manchester
and says that Ryan looks a lot better and appears to be tolerating his feed. He is on 6ml an hour. It is still early and we
wait to see what he is like when he wakes up. Let's hope the news continues to get better when I visit tomorrow.
I
forgot to mention two further visitors to Ryan last week. Michelle and Kathleen from Partners In Care in Harrogate and Vicky,
who also has a Hunters child. Rachel said she is very lucky to have such caring friends.
25 March 2011
Ryan continues to make slow but steady progress. Bob, who has been with him for two days whilst Rachel
is home for the first time in nearly seven weeks, says that he stopped him being moved to HDU and repeating the mistake made
last time. I have some concern that the person co-ordinating Ryan's treatment is not working at present and fear
the possible consequences. However, it is not all doom and gloom; he has been watching DVD's whilst sitting in his buggy
today and all we want now is continued progress and his smile back.
23 March 2011
Ryan came out of the theatre minus his tube
but plus a tracheotomy. He has had some discomfort but we are not sure if this is as a result of the procedures in theatre
or his still unexplained pain. This afternoon he went to sleep for an hour and a half, which is a good sign.
My
big concern now is that he is not shunted out of Intensive Care too soon (as he was last time). I hope a care plan is
put together by all concerned, with proper medication available should the extreme pain return.
At this stage we are
more positive about him than we have been for the last six weeks.
22 March 2011
Ryan was relatively
peaceful on Sunday and Monday, with a couple of scares as his blood pressure fluctuated between very high and very low. He
is still heavily sedated so we have not seen him conscious for over a week.
This afternoon he is being extubated, which
means he will also lose the help of the Anaconda device. There is also talk of perhaps having a tracheotomy. Our big concern
is of course - will he still be in pain once he comes round. We live in hope!
18 March 2011
A quiet day with Ryan at last receiving his enzyme replacement
therapy after a gap of five weeks. He is still heavily sedated and will remain so until Monday, when he will also have another
scan to look again at his pancreas.
I am off to
Manchester on Sunday and as we do not expect any major changes to his treatment until Monday, that's when the next
entry will be.
17 March 2011
Another
day of trauma. Ryan is now on an Anaconda (a device for anesthetic vapours delivery) which appears to keep him sedated and
pain free. The problem with it is that as soon as it is disconnected, he is immediately in great pain. Also, it can only be
used whilst he is intubated and as they wish to take the tube out as soon as possible (for good medical reasons) I worry about
their ability to stop another day of agony.
Ryan is also having a blood transfusion.
He also had another scan which
showed, amongst other things, that his pancreas is not quite as it should be. Whilst one consultant has voiced the opinion
that this will not be the cause of his pain, I am of the opinion that, as he does not know what is
the cause, it should be investigated and eliminated. I know Rachel is going to pursue this today.
Rachels friends
Elaine and Joe, with their Hunter son Daniel, were down from Newcastle and came to spend some time with her. I know it
cheered Rachel up and was much appreciated.
Another thing which cheered her up was receiving a large box of chocolates
from Springwater School and a present from one of the boys in Ryan's class. They are lovely people - http://www.springwater.n-yorks.sch.uk/
16 March 2011
The good news is that the promised meeting took place
and we now hope for "joined up" treatment for Ryan. Certainly, yesterday, there was more activity around Ryan's
bed than I have seen before with new ideas being tried to relieve his pain. Emails have been sent to consultants in other
hospitals to see if any of them have come across the problems he is having.
The bad news is that Ryan had a bad night
with low blood pressure. His Enzyme Replacement Therapy, which was planned for this morning, has been postponed. I am just
off to Manchester and hope to get some more positive news when I get there but I am not holding my breath!
Latest news at 10.30pm 14 March
Bob just back from Manchester reports another horrific day with Ryan in agony for long periods. I am off to give
Rachel support at tomorrows meeting. I just hope that everyone concerned turns up and something is worked out that at least
stops this terrible pain. It has been going on now for some eight weeks and I find it hard to understand why, in this ultra
modern hospital, the great medical brains there are unable to work together to do something for Ryan. He is so incredibly
strong but I don't know how much more he can take. I also worry about the effect it must have on Rachel who has lived
with it for most of the eight weeks. I find it almost unbearable to witness just one day.
14
March 2011
No
real change with Ryan still in ICU and still in pain from time to time and receiving extra morphine. However, at
last, all concerned with his treatment are having a meeting tomorrow, when I hope we will be getting a joined
up care plan. It looks as if one of the items to be actioned is sterilisation of his bowel. So, we will see what happens tomorrow
but in any case it looks like at least another two weeks in hospital for Rachel and Ryan.
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