Sunday, November 1, 2009

Saturday October 31 – Sick of Thickener

I couldn’t sleep this morning – I went to bed very late last night and woke up far too early. As I lay awake in bed, I realize that I’m worried. The reason wasn’t obvious to me until this morning. I’m worry that we are in a new hospital. A new hospital with a new health care support net around us. Is this as good as the one at the QE2?

At the QE2, I had just got to the point of knowing every one and the role they play in your recovery. Now your team is new. Is it as comprehensive as the QE2’s team? It’s certainly not a rehab team. Being a regional hospital, the Colchester Hospital, does what regional hospitals do – Stabilize big problems, fix small problems and give on going therapy for long term problems. They don’t have the specialties that are offered at then QE2 and rehab.

I’m worried that you will be ‘stored’ there during a critical part of your recovery when rehab will have the biggest benefit. Is the window of opportunity for rehab a slowly opening and slowly closing window? Or is the opportunity for the maximal benefit very well defined and missing a chance to work on a neurological skill now means that skill may never be mastered later.

Knowing that stroke recovery can continue for 1 to 2 years, my hunch says that the window of opportunity is wide and we have time – but how much? And how long are you going to be in the Truro hospital? At present, I know nothing about the waiting list at the rehab hospital.

The area, where the damage is the worst, reflects your neurological losses. Like any healing tissue, it is organizing and scarring as I write about this. Does some of the recovery have to come from this area? Maybe the tangible recovery is solely dependent on other areas of the brain taking over. But if the scarring of the affected area too advanced, is the re-routing as effective.

Dr. Mendez said the part of the research for stem cell therapy is directed at the timing of stem cell therapy. There is a reason for this. If the scarring is advanced, can stem cells overcome the scarring and grow new pathways to re-establish old connections and still effect a difference? If this is a concern for stem cell therapy, then surely it’s a concern for rehab, which requires the brain to establish new ways to communicate within the brain using existing cells.

This is another case of knowing enough to worry but not knowing enough to not worry. I wish the move to Truro wasn’t sprung on me on at while working on a Friday afternoon. I didn’t have an opportunity to direct these concerns to your old QE2 team and get answers that I can accept.

If rehab is not in the near future, what can we do to maximize your recovery. I was thinking about the video called ‘Life Support Music’. Jason’s extended family took charge of his physio and he succeeded in having a lengthy but good recovery. Is this sort of undertaking within our reach?

The past few days, your emotional moments are starting to take you down a different path. In the past your emotional times were related to how others felt about you. It was an empathetic emotional response. When I read you the kind and healing words that people have written for you, you felt their pain. I don’t think you cried for your own loss yet. I don’t think you had really come to terms with your loss yet. The reality of the situation hadn’t cemented itself into your thoughts yet.

The last few days have been different – You have cried out suddenly, “I let you all down” and “I won’t be able the run again.” For the first time, I think you are sad for your self, for your loss. Your physical loss, your loss of time (almost 2 months), loss of some of your vision possibly and ultimately loss of your independence and your unique sense of self.

I think this is the time when you might need the rest of us the most. You need to hear our collective voice cheering for you as you run in this marathon of your life. This is the most important marathon of your life and you need support.

The move to Truro has a silver lining. The children and I can visit you every day more easily. The other benefit for me is that this gives me a small break to get things done at home. I have neglected the house – I’ve done the essential things but there are a number of little things that need to be done before winter. They are starting to mound up and I am starting to feel a little overwhelmed.

I get the kids up, help Tara finish her costume, nit pick Tara’s hair (apparently it’s still a work in progress!) and got the children off with Juanita to make pies at the Shubie United Church.

Just before I leave to visit you, Janice (from PEI) calls and tells me her interpretation of your transfer to Truro. She is also concerned that you are going to be 'stored' at the regional hospital. She said that she talked to someone on the floor of the neurosurgery floor and she said the waiting list is months long!

I wonder if this source actually knew what she was talking about – perhaps the ‘months’ comment was just the standard line that is given so not to raise people’s expectations.

I have to face it – there is no way to get good information until Monday when the physio people, both in Halifax and Truro, are available. I can also talk to Dr. Feltmate, your GP. Until Monday, I have to put all my negative feeling on hold – when I know more - I can make a better plan.

To visit you, the visitor has to put on gown booties and gloves and you must wash your hands after. The fear is the MRSA. We already had a scare with it in the step down intermediate care unit. The MRSA precaution is a pain in the butt. Every time the children or I want to go in the room or leave the room, we have to dress up or strip off all the gear. I expressed annoyance with the whole business. I said “I can’t wait for the MRSA test to come back.” You add “Yeah that was a tough test – I hoped I passed.”

Today, you are sad and overwhelmed. You are painful. The move has been stressful with a new place and new people. It’s like moving to a new school. You don’t know anyone but in time things will get better. There will be more visitors with you in Truro. This will be our opportunity to help you heal emotionally, before you start on the next part of the journey. We can be an important way to plant the positive messages you need to hear to heal.

You are getting sick of thickened liquids. Some poor nurse last night tried to satisfy your craving for water. You wanted cool liquid water that you can gulp down and feel it wash over your tongue, refresh your whole mouth and slide down your throat. She gave you thickened water! You are sick of the thickener.

You tell the children that you are going to fall in love with the first person who gives him a ‘thickenerless’ beverage.

You are wondering about the physio. “I want to walk again” I tell you that physio will help you to learn how to walk again. I can’t tell you much because I don’t know what to tell you. I try to pacify you with encouraging words. Between sobs you say “I want to run another marathon.” My heart aches for you.

Then you say you want to win a marathon. At first I took this in the literal sense. But after some reflection, I think you are talking about this hypothetical marathon. Although you have joked about it, I don’t think you ever thought that you could win a marathon. So it is more likely you were referring to the marathon of recovery.

I read another letter from Janice, You are happy and you want her to move in with us. In many ways I think Janice has been the sister you never had. She has been a source of strength for you while you went through a few tough times over the years.

It was time to catheterize you. As Lindsey places the catheter, you say, with a little weariness in your voice, “I guess I’m going to have to make love to the catheter lady again.” Lindsey took this comment in stride. As you empty your bladder, suddenly a fountain of urine flows out – pushing the catheter right out of the bladder! The best pee ever. Lindsey and I both smile at the situation. It’s a good sign.

We play with a glove that we blew up like a balloon. Glove balloon game lasted for a while. You would hit it with your right arm only

Mildred and Laurie visited. You are happy to see them. A dose of ‘Mildred enthusiasm’ is just what you need.

I drive the children to Juanita’s to get ready for Halloween tonight. I let you rest. You are worried that if I leave, I won’t come back. “I’ll be back, I’m not giving up on you now!” I tell you.

When I get back, you had slid down the bed and have your legs jammed between the bedrails. You were unable to reach the call button for the nurse. I can see that the MRSA is a challenge for the nurses too. Popping in to do a quick check on the patient is more difficult and probably not done as much.

The children had a good Halloween. They have far more candy then they know what to do with it. In previous years, there is always Halloween candy and Christmas parade candy and Easter candy left over. This is surprising to me especially since they both keep their candy in their rooms. That would have never happened in our childhoods.

Tomorrow when we visit, the children will bring some of the candy – which you can’t have so I’ll get you a 4X4 Tim Horton’s coffee… with a little thickener.

NOTE to the blog readers: If you live handy to Truro and are able to visit – please do. Visiting hours are 2-8 PM. Beware that there are sick people in the hospital. Please take the precautions as you enter the hospital so you can protect yourself and Chris from the HINI virus.

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