Thursday, April 28, 2011

Easter drama

Easter is about drama, despair and new hope. 
As such, this one followed the recipe. 

We went over to Tysnes, to spend a couple of days with Helmer (and Hilde Marie and Jon Helge too, of course), before we planned to take off in the camper van for a few days.

Helmer has a lot of fun communicating with his toy mobile.

He loves having his bath, and is not too happy when it's over.

The grandparents taking Helmer for a pram ride.
The road is all cracked up from having been frozen and then thawed.

Finally, wild spring flowers are popping up everywhere.

One evening I captured this beautiful visitor in the field.

There's always something that needs to be done on a farm,
and this is going to be the new pig pen.

Tiril (the black one) and Henry have been in separate pens in the barn
all winter, and they so obviously enjoyed being together again. 

Thursday morning we received a phone call from a home care nurse, saying Geir Espen (our son) had been taken to hospital. A friend of his had tried to wake him up, noticed that he had vomited, realized that he seemed strange, and checked his blood sugar level. It was extremely low, below 2 (I think we use a different scale from you guys in other countries). Right then the home care nurse came by, she took one look at him and called an ambulance.

A summary for those of you who don't know Geir Espen. At age 13 he was diagnosed with both diabetes type 1 and Morbus Addison (adrenal bark failure, he doesn't produce cortisol, and has to compensate by taking cortisone pills daily). He's had a tough life; these two hormone deficiencies work against each other, and make them both harder to manage. During his teen years and for a few years after, he more or less ignored his condition and consequently struggled a lot with long term high blood sugar levels and low cortisol levels, resulting in poor general health. Over the last year he has started to take charge, on and off; I think Sigve's leukemia diagnosis was a wake up call for him. He started to realize that his mum and dad wouldn't be around to take care of him forever.
For the last year a home care nurse has been checking up on him in the morning, as the lack of cortisol in his system complicates the waking up process. If he wakes up by himself, he phones in to let her know he's ok, and if he doesn't call, she checks in on him.

So that morning she came by, and started to administer honey to raise his blood sugar level. But instead of rising, it kept dropping, right down to 0.9 which is alarming. It took her and the ambulance staff over an hour to get it back up to a level where Geir Espen was conscious again. The ambulance took him to hospital at Stord, about half an hour away from here.
At admittance his CRP was high, over 150, indicating an infection. Eventually they concluded that it was pneumonia, probably caused by inhaling bacteria from vomit earlier in the morning.
He slept all that day, through the night and most of the next day, as he always does after an incident of hypoglycemia.

We decided to go ahead with our camper van trip. We didn't plan to go far anyway, just about an hour away from Tysnes, to a bird sanctuary that was a nice area for hiking. We would still be close to Stord.

We went for a beautiful evening walk, and the sunset was amazing. For a few days there was a haze in the air that made the sun look big and red like blood.

The next day we called Geir Espen on his cell phone, and what we heard was alarming. He was coherent, but what he said didn't make sense. We spoke to a nurse, who knew him from before, and she thought he seemed very different this time. 

So we decided to cut the trip short, and returned to Tysnes, and then to Stord. When we entered his room, Geir Espen looked at us and said: "You are my parents, but you don't look like them, you both look like cartoon characters".

The more we talked to him, and listened to what he told us, the more concerned we were, and it became apparent that he was hallucinating. He was seeing people that were not there, and he explained that everyone had cartoons playing around their eyes. He said he was not sure that we were actually us, and that we might be someone else posing as us, so he could not trust us. Over the next couple of days he had visions and heard voices, but from time to time he was lucid and realized that it seemed like he existed in two different worlds, one real and one imaginary, and that obviously scared him. 

Not feeling so good.

The doctor called it a temporary state of confusion, kind of like a psychosis, caused by a combination of unfortunate events; i.e. the infection, the very high dosage of cortisone he was given along with antibiotics to fight the infection, and the long period of hypoglycemia; which in itself could have been enough to cause this condition. The treatment was medication to remove the hallucinations, and sedatives so he could sleep. Sleep was crucial to enable the brain to heal itself. 

This went on for a couple of days, and then, like the doctor had indicated, his brain cleared up, things fell back into place and it was over. Can you imagine our relief when that happened?

Later on, he has told us that at one point he was so exhausted from trying to fight off everyone who he thought wanted to hurt him, so he sat up in his bed and said, I give up, do whatever you want with me. At some other point he "invented" something he called an "angel cage" that he could enter when things became too hard, and it took him to another parallel universe. 

I think it is impossible for someone who has not experienced hallucinations to imagine what it must be like to have them. Yesterday Geir Espen said that in a sense it has been a positive experience because it was so horrible that he will do all he can to avoid going back there. This gives me new hope for his future.

Geir Espen is feeling so much better
and enjoys a game of cards with Sigve. 

My heart aches for him when I think about what he went through, but I am also filled with gratitude that it only lasted a few days.

Last night and this evening I walked up to Brandasundsåta to catch the sunset. I am continually searching for the perfect sunset, but recently I have realized that every sunset is both different and perfect! 

The setting sun by the Slåtterøy lighthouse.

And of course I found a big heart rock :-)

So this Easter turned out very different from what we had planned. We had a very disturbing and desperate time before we talked to the doctor; of course it is so easy to imagine the worst. But this doctor was thorough and  spoke comprehensibly, and I felt a lot better after seeing him.

Me, I'm exhausted. It will take me a while to collect myself after this one, and I'm not even sure I can handle it myself. So much has happened this last year, and with this on top, I have decided to start seeing  a therapist. I think talking to a professional, and an outsider, will be good, and I think it's important to start before I hit a rock bottom, rather than after. So I had my first session yesterday, and the therapist was a person I felt comfortable with, so I think it will be a good process.

Finally, what am I grateful for today?
* I have already mentioned one; that Geir Espen's state of confusion was temporary, and short.
* That Sigve's journey back to a full life continues, the blood tests are satisfactory, his immune system is well on it's way back to normal, and the doctors are happy with him. The next big check-up, the 9 month one, is on May16th.
* That I get to see a therapist that I felt comfortable with. Actually, that I get to see a therapist.
* And of course, I am so grateful for this little one:

Btw, Geir Espen has ok'd that I post about him!

Monday, April 4, 2011

Shortcuts through the last month

"There are no shortcuts through the forest of life."

Years ago I had a poster with a forest picture and this quote. I have no idea who said it, but I always liked it.

* * * * *

Sigve is still doing very well. He has started to gain weight again, though slowly. All blood tests are satisfactory. The liver tests that I wrote about last time are back to normal after he increased the Sandimmun medication. The biopsy showed that there was no infection, so the conclusion was that the increased levels were due to a slight GVH (graft-versus-host) reaction. As I have mentioned before, that slight reaction is desired as it indicates that the transplanted cells are working. Research has also shown that those who get that reaction have an increased protection against the reappearance of the same kind of leukemia. So now he stays on the increased Sandimmun dosage for another month, and then he does the decrease process again, and hopefully he will eventually be able to come off the medication altogether. 

* * * * *

Since my last blog post, which was way too long ago, we have had
grey skies and still waters,

blue skies,

and sunshine,

and even the odd blizzard. 
Fortunately, that snow didn't settle at all.

Birds have found the food I put out for them.

We have watched the snow and ice melt,

and found what I hope are 
the last snow hearts of this winter season.

We have taken walks, climbed up and down, 

and had fun throwing rocks in the water.

We have seen regal swans,

and even scared up some geese.

We have found rock hearts, 

and seen the first signs of spring.

We have witnessed the most amazing sunrise,

glorious sunset,

and stunning northern lights.

But the most magnificent experience of all is getting to know Helmer.

We have crossed the Bømlo bridge several times,

and caught the ferry to Tysnes,

to see Helmer, who is growing so fast, 
and has become so much more alert and sociable,
interacting with us, 
keeping a steady eye contact for long periods of time.

His little hands have started exploring his world,
but they also hold on to mommy's hand for comfort.

His little feet sometimes move like drumsticks,
and his toes are just too cute.

I recognize features in him from his parents, his uncle, 
his grandparents, his great grandparents 
and even his great great grandparents.

It is so amazing to see the visible connections between 
the preceding generations and the new.

Everything is linked together, and whether we like it or not,
we are influenced by those who have gone before us.

But each of us are also our own person in our own right, 
with the ability to create our own life and destiny. 

For now, and for quite a few years to come,
he depends on his parents, and his extended family,
to provide for him all he needs to build the best possible 
foundation, so he can grow up to be a well adjusted person,
and have a happy and fulfilled life.

What a responsibility, and also what a privilege that is,
and I am so grateful be a part of it!

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