Saturday, June 16, 2007

Home again ...

Home again …

First the news … HH is back in form and yesterday he and I flew home to the states for our summer vacation. A little over two weeks ago he was diagnosed with Bacterial Meningitis and needed to stay in the hospital for ten days of antibiotic treatment – it was a huge relief when the doctors reported that he could be released.

Living with him for that time in the children’s ward of the hospital was a tough stretch. It wasn’t just the tiny bed that I couldn’t really sleep in because the monitors were going off all night long or the hospital food which was – well – it was hospital food. The difficult thing was witnessing the suffering of the children who shared the space with us. We joined the small community of mothers and fathers and children during our stay on the ward and came to know each child and their illness and the struggle their families were experiencing. We supported each other, watched each others children for a few minutes while the other took a walk or made a phone call, shared meals and played together in the halls and rooms, careful not to topple the IV-drips or play too roughly with the very fragile children.

We had a roommate during our stay, a beautul, spirited four-year-old girl named Mercedes who is suffering from a rare form of Epilepsy. The day they brought her into the room she had just spent three days in the ICU and was barely conscious. I’m not an expert on the subject of Epilepsy but her condition causes her to have frequent tonic-clonic seizures, as many as 30 a day, and they leave her unable to speak or move. She wears a helmet when she leaves her bed because when the seizures come she looses all muscle control. Her doctors can’t find a cause for the seizures and they can’t seem to find the right combination of medications to control them. They have given her six months to live. The family has made the rounds of the hospitals in Europe and they are now attempting to have Mercedes admitted to the NYU Comprehensive Epilepsy Clinic in Manhattan. We are lending what support we can to make that happen as soon as possible.

HH and Mercedes became fast friends. When she was able, HH and Mercedes played together, laughed, snuggled into his hospital bed together and watched Sponge Bob and during these times Mercedes seemed to come alive, some of the cloud that generally covered lifted and her spirit was evident. Their favorite past time was playing doctor and they would take turns ministering to one parent or another, giving injections, taking blood pressure, probing, giving medication – they seemed to be acting out the full range of their experience as patients on their parents, even the more painful and traumatic procedures to which they were subjected. I imagine it was a way of coping with all the pain and fear they must have felt, never knowing from day to day or moment to moment what their doctors or nurses might require them to endure. That said, they seemed to love those in whose care they were placed, at least they didn’t seem to fear them, but I’ll never know for certain.

I am grateful beyond words that HH received good treatment and has come through this illness intact but the experience isn’t over because the image of his new friend staring up from her bed, her face twitching with the small deadly seizures that follow the more dramatic ones, haunts me even now as I write this in the middle of the night in our small cabin here in Upstate New York, far, far away from the hospital alarms and wails of frightened children in the night.

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Blogger Rositta said...

Oh wow, I was wondering were you were. I am glad HH is better, meningitis is a horrible thing. My granddaughter spent one night in hospital last week, they suspected the same. After a spinal poking they cleared her fortunately. I am glad you got good health care. I feel very sad for little Mercedes. Enjoy your stay in the woods...ciao

6:34 PM  
Blogger Carol said...

Wow... both of you are so brave. I can't even imagine. I'm glad HH is feeling better, and glad you were able to stay with him through his ordeal.

Mercedes sounds like an angel. You DO know that you and HH enhanced her life, right? And that whatever happens from here, HH's obvious love for her has made her experiences more tolerable. Sometimes, it seems, one must measure the good in very, very small doses. But they're still GOOD.

Enjoy the peace at the cabin. Hugs to HH. He is so adorable.


8:02 PM  
Blogger christina said...

Oh the poor little guy. You must have been out of your tree with worry - I can't even imagine. I hope he won't have any lingering complications.

How wonderful that HH and Mercedes found each other, and let's pray that they do find some way to ease her condition and allow her to go on. So sad.

9:51 AM  
Blogger Signora B. said...

I am so glad HH is doing better .
Lets hope and pray there will be help for little Mercedes.
The photo of those two little friends is touching .
Have a wonderful summer and make lots of memories .
Happy Fathers Day,Richard.

4:27 AM  
Blogger Cathy said...

I can not imagine. I am so glad that HH is better and that you are back to a beautiful spot for the summer.

My brother has epilepsy and has just been treated in Montreal, where Canada's main research and treatment centre are. If there is anything at all that I could possibly do to assist this little girl, please let me know!

2:37 PM  
Anonymous V-Grrrl said...

When my son was 13 months old, he went to the hospital for a minor outpatient procedure and everything that could go wrong did go wrong. Like you I ended up staying in the hospital with him for about two weeks, and the pain of seeing him suffer was exacerbated by the cumulative suffering on the whole pediatric ward. All those crying babies...

It truly changed my life. Since then, we've financially supported St. Jude's in Memphis and encourage others to support children's hospitals. There's simply nothing worse than chronically or critically ill children.

2:51 PM  
Blogger d. chedwick bryant said...

I was thinking about HH ...knowing he was not well.
Glad he is recuperating in the Catskills.

2:33 AM  
Anonymous Volker said...

I'm glad to hear HH is better.
He is lucky to have such good parents.

2:59 PM  
Blogger Chloe said...

oh my god Richard! This must have been so frightening. Meningitis is frightening. How wonderful that he is fine now. He needs a vacation and you too.
I hope Mercedes is getting better too. Children suffering, that's the worst punishment for a parent, or any adult in their right mind, really.

1:20 PM  
Blogger Signora B. said...

Hi Richard,I hope you and HH are alright.
I just heard about that horrible storm hitting the Catskills yesterday .
Take care...........

10:08 PM  
Anonymous Ruhie said...

My name is Ruhie and i am from Kenya. I have been reading your entries and they are heart warming.

This entry left me with tears in my eyes and i pray that Mercedes gets better.

P.S. HH is so cute!!!

Keep well

2:08 PM  
Blogger Berlinbound said...

Ruthie ...Thank you for your visit and comment. You are my first reader from Kenya - at least the first I know about. I visited your country a few years back, while working with a group of doctors and others who treated mothers and children afflicted with HIV. I will never forget my time in Africa, it opened my eyes and heart in many, many ways.
I have not heard from Merecede's parents recently, and I don't want to pry too much into their lives. I only hope she is well and has gotten some treatment that actually helps her. Thanks again for stopping in.

6:33 AM  

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