Case Conference

Hello All,

Sorry not to have been in touch recently. I have been on vacation from school, which means that I have been trying to relax as well as try to sort out my dad's affairs! Ian and I went to visit Ian's family in Northern Ireland for a long weekend so I have been out of the loop with emails!

Last Wednesday we had the case conference with the various staff at Pinderfields. Attending were: Mr Jamil, my dad's consultant, one of the nursing staff, the nurse liaison, an OT, a PT, Dr Ford, my dad's clinical psychologist, a legal services representative and Dr Macfarlane a registrar (doctor!) as well as Ian, my mum and myself (and my dad of course!).
We all felt it was a very productive meeting. There were several main outcomes from the meeting:
-my dad's case is still in the very early stages and Mr Jamil was unwilling to give a prognosis.
-it is hopeful that the halo will come off in about 2 weeks, after it has been on a total of 3 months. Mr Jamil said that they will remove the halo vest and do some stability testing of the neck, some x-rays and even a CT scan if necessary to see if the fracture has healed. If so, the halo will come off, if not it will stay on as long as it takes.
-A tentative discharge date of July was discussed. This is very fluid and depends on many factors. Mr Jamil will only discharge my dad to a specialist spinal injuries unit in the US like Pinderfields, approved of by Mr Jamil, with the assurance that the hospital in the US will reintegrate my dad into the community.
-It is more than likely that my dad will need a new place to live, his current apartment is completely unsuitable for someone with his injuries. He will need wheelchair accessible accommodation.
-If this had happened in the US a case manager would have been appointed. Someone who deals with all the logistics of my dad's case from housing, to rehab, to living arrangements to benefits (we don't have such a thing in the UK). The hospital is going to liaise with the various insurance companies in the US to see if a case manager can be appointed for him there in order to get the process of his return to the US started.
-Under no circumstance will Pinderfields refuse treatment due to insurance issues.

Another case conference will be held in early May, hopefully when the halo has been removed, and we will see where we're at then. So, thank you all so much for all the help you have offered and given so far. In the next few months my dad will probably need more help from you. His belongings may have to be moved from his current apartment before he returns to the US and many of you will (hopefully) be able to help with that. When he returns he will need lots of visitors to keep his spirits up! Some of you have already been doing some investigating of possible options for his return, we may need that information passed on to his case manager (if he gets one).

Thanks again for everything you are doing, the emails and phone calls are wonderful. I know it can be difficult to get through on the phone, but he loves to hear from you. We all keep plodding on. Hope you had a good Easter.
Love,
Airasa

View of Graham at the foot of his bed and his yellow smiley call button on his lap. 

Graham is ready for his conference. 

Update on Graham's conference

Dear all,

OK, that was very discouraging -- I just wrote a long update and I lost it to the great computer in the sky, even though I carefully hit the save button first. Hmm. Think I will save this in word first then... It is so hard to reconstruct!! You will probably be grateful, however, as it was turning into a long letter -- do you think that is a message to me to write shorter ones??

I thought Airasa might write an update, as she took lots of notes, but since I am always on the computer sooner I will beat her to it!!

We had a full group of care professionals plus us at the meeting. Which included his main doctor, a nurse from his care team, an OT person, a PT person, a legal person (who is more to do with money, he hastened to add), and the Community Liaison Officer (I am not sure of her title). Each person took time to tell us what progress Graham was having and then at the end we had open questions and answers. It was very useful to hear what each person had to say about what they were doing to help Graham.

I guess what was best for us to hear is that they will continue to treat him until it is safe to release him to another appropriate care facility (hopefully the one in Santa Barbara) from which he will be slowly introduced into the community and his new living situation there. He will obviously need a home situation where a wheelchair will move around and he will need care of some sort regularly. However, we believe he will be able to return to doing some work eventually as he is learning new skills and eventually will be able to work a computer.

Graham is definitely making progress, though of course it is slower than any of us would like. Because he has feeling in his hands we are all hopeful that eventually he will get the use of them back, but it is very very slow. In the meantime, he is learning to use his arms quite cleverly. He is learning to feed himself as well as wheel his chair. The halo will be removed around 6th of April and he will be scanned and probed and tested to see if he can keep it off or if it needs to go back on again. He will have weak muscles in his neck to retrain when it comes off. There is so much he is having to do and he is really working hard to make himself better.

Your continuing support is vitally important and again I thank you for that.

He has arranged to go to Easter Sunday services at the hospital and I will probably see him later that afternoon and again on Easter Monday, though it will depend on whether I have other things I need to do. Airasa and Ian are going to Ireland to visit his family for a couple of days so that will be good for them.

There is much to be done still, of course. We need to continue to work with people in California to get appropriate care facilities there and Graham has to keep on working to make himself better.

It offers each of us much to contemplate when something like this occurs.

I personally walk more carefully than ever, step out of the tub with special consciousness, think about how wonderful it is to be alive, and am very grateful for the medical profession here and the care that Graham is getting. I expect each of you has also been affected by this accident. Even if you are not part of the team doing things that need to be done, just your good wishes, your cards and letters, your phone calls, and most of all your caring concern are important in Graham's recovery. To those who are actively doing things about finances, care facility research, mail and apartment duties, we are most grateful as you can imagine.

The staff psychologist particularly mentioned how important Graham's support system is in his recovery. So thank you all.

Have a good few days and probably Graham will write his own update my next time in with the laptop -- probably on Monday.

Have a happy Easter Weekend.
Kind regards,
Linda
PS I am going to send a photo in a second email as perhaps that was what made my first email go poof!

Monday Update from Linda and Graham

Dear all,

I have just come from the hospital where Graham managed to dictate the following e-mail to you all. I hope it will be posted to the Blog as well, but I have no control over that. Therefore, it is important also that you let us know of anyone else who would like to be added to this list so that people get the updates directly. I have added Nicole and Troy to this per their requests.

I must say he was looking well, though stuck in bed. He was able to be up in the evening yesterday for 'dinner and a film' with Airasa and Ian, so that must have been a real treat. It is hard for most of us to imagine what it is like, being so helpless and unable to do much of anything. I am so proud of the way he is progressing both physically and mentally, and I know that your cards, letters, phone calls, and gifts have been instrumental in helping him to maintain his composure and improve his quality of life. Thank you all for your continuing support.

Spring finally seems to be on the way here and it is lovely to see the flowers bursting forth on the way to the hospital. He has been moved to the bed opposite on the ward now and so will have new bits of the ceiling to stare at while he is still confined to the bed a lot.

Now over to Graham:

Dear friends, family, comrades, and other loved ones,

The word has gotten to me that you are verily crying for an update from me about what is going on here in Merry Old Wakefield; or, more particularly, my situation in Pinderfields.

Next week there will be a case conference on my case, at which a whole bunch of people will be discussing with me the therapy I have received and the therapy I might receive, and I think generally what to do with me, so I will keep this particular update as concise as I can.

Before last week, I had two solid weeks of both physiotherapy and occupational therapy, plus some quite helpful meetings with the staff psychologist. It’s really difficult to describe what exactly my exercises are in either therapy, so I will summarize by saying that the physio sessions are devoted to developing muscle strength in my arms, particularly my triceps, in order, among other things, to be able to wheel my chair and therefore be independently mobile. The occupational sessions are devoted to working with my hands with the goal of my being able to do more things for myself, like eating and using a computer.

Starting March 6th , I suffered a relapse having to do with a hard spot on, as the English would say, my left bum, which meant that I was essentially bedridden most of the time until today. I know this is a little confusing, but my consultant, while instituting a program to find out what the problem was, also instituted a program that I could be up a half an hour on Monday the 7th and as long as the skin in this particular area of my behind was OK, I could add a half an hour each day, which I have done. In other words, Monday a half hour, Tuesday an hour, Wednesday an hour and a half and so on to today, when I have been up four hours.

For reasons I won’t bog us down in, I only managed to get in one session of occupational therapy, which involved my trying to eat a regular meal with much assistance from my OT person, Kerry. This involves putting a special strap on my hand and a modified spoon in the strap and my trying to maneuver the food from the plate to my mouth. Friday the 11th I managed to do a full session of physio, which was challenging, because my arms had become surprisingly weak without the continued work that had begun the previous two weeks.

Today the 14th I had a full session of physio and a full session of OT as well as sitting up for my lunch. However, the OT session ended quite emotionally for me as it involved trying to get used to baby steps with the computer. Suddenly it reminded me of my job in the ‘village’ and how I had lost all my abilities in my hands. If the OT session hadn’t been so close to closing, I’m afraid I would have lost it completely; as it was, I just managed to mostly choke back tears.

I hope today marks the beginning of another upswing in my progress. Whatever the case, I will keep you honestly posted on how things are going.

May the force be with you,

Graham.

PS No, there are no monkeys running errands on the ward! As much as I appreciate the many generous offers for books on tape and an iPod, I must decline. It’s too noisy on the ward to listen to the spoken word, without losing half of it. The iPod is just too complicated at the moment.

Updates and Updates

I've been busy with My daughter's Girl Scout troop and our PTA newsletter. Here is Linda's update followed by Airasa's:

Hi Nicole,

I am sorry to hear that emails cannot be sent around ABC Clio any more.

I am sending this to UFOESP and it should be posted onto the blog. Sue has been away and also there have not been any updates from either Airasa or me for a while. Next time I go in I will be taking dictation from Graham for a letter to all but I have been busy with getting my house ready for my first viewer today (I hope I can sell quickly) and getting packed to move into my new flat as soon as that all goes through and have not seen Graham myself since last Monday.

I am hoping to get to see him Sunday as my friend who has been helping me prepare the house will be leaving then.

I have also heard from Troy from ABC Clio explaining why the emails can't be sent around any more -- it is a matter of protecting Graham's privacy about his health, which I can understand. The letters on the blog are open to anyone to read, whereas emails can be forwarded to people and this is inappropriate.

I can also add you to the general list!

Kind regards,
Linda



Hi all,
I'm sorry I haven't been sending regular updates to people but life has just got in the way, I'm not ignoring you! Although I am starting to feel like I know you all from your emails and enjoy receiving them (and Tarre, we're still waiting for the story of how you got your nickname!), we are trying to have more communications directly from and to my dad, not only for our sake, but also for his and yours, it's hard to always be communicating through a third person! He has REALLY appreciated all the phone calls he has received, as well as the continued emails and letters. Unfortunately he is not able to make international phone calls from the ward phone, and I know it is often busy when people try to call him, but despite its imperfections it really does make a big difference when I see him and he has had a phone call from someone! My mum is being a star and has gone in today for him to dictate an email for his own update. She is planning to put it on the blog so all those who aren't able to receive the emails (for whatever reason) should be able to see what he is saying! Thanks again to Sue for setting that up. Take care everyone Love,
Airasa