Thursday, May 06, 2010

Day 195 Update

Just wanted to fill everybody in on what's going on with my oldest son, Big Kid---a little more than 6 months after he was admitted to the hospital with complications from H1N1. You've all been so kind in comments and emails, so I wanted to update.

He's still on oxygen almost 20+ hours a day. When he's down at Kitty's house (about 2000 less in elevation than our house), he can go off of it for about an hour and a half tops with a saturation level of about 88---which is in the normal range for most of us. Then inexplicably it suddenly drops to like 68 or 70, which is low enough to be hospitalized. It's not gradual, it's just happens immediately.

A couple of times they've been out (and not planning ahead with the tank on hand) and he's just fallen over, gasping.

My boy.

We had him evaluated cognitively and neurologically recently. It was time----giving him time to recover and to see what the possible long-term damage from oxygen deprivation might be.

This morning we got the results.

His neurological diagnostician is one we've seen twice before. First when Big Kid was about 13, and had a psychotic episode on his stimulant meds that had treated his ADHD initially. It wasn't working anymore, and at puberty, he started compulsively washing his hands until they bled.

The next time was about 4 years ago when Big Kid had a breakdown away at college and was hallucinating. He was ultimately diagnosed with bi-polar disorder and a panic disorder.

So Big Kid went through an intensive neurological testing process again.

And I've been crying all afternoon.

He's got new pronounced attention and short-term memory deficits. His processing functions have significantly been impaired---meaning that whatever information he retains can be only be accessed with an extended amount of time to get to it.

His fine motor deficits are mostly caused by the loss of spatial recognition. He can't place 3 blocks on another without it all falling down.

Bless his heart.


While the doc was giving us his findings, my boy got really confused and scared. We were sitting next to each other on a loveseat in the doc's office and he grabbed me and said, "Mom, does this mean that I'm mentally retarded now?"

I'm sad. I'm so sad.

Big Kid remembers when his mental functions were better. He's frustrated by it all, and scared. Yes, scared.

The doc has made many recommendations as to testing (recommended a brain scan among other tests) and cognitive therapy.

So we're going to have to start a new phase now.

I'm sorry to be such a baby. I just need to get this despair out of my system.
I can't cry in front of him, I have to be strong. But I can spill it all to you guys.

My boy. My precious boy.

53 comments:

SRR said...

I'm so sorry. Thank-you for sharing. I'm sending a prayer/good thoughts your way. A virtual hug through cyber-space.

Stinkypaw said...

oh ATM, I'm so sorry to read this... your poor boy doesn't catch any break, nor do you... Don't give up. Bless all your hearts. *hugs*

Joanna Jenkins said...

Big sigh.... I am sorry the news wasn't better ATM but I will continue to keep you both in my prayers. I truly believe in the power of prayer and the wonders of modern medicine.

Have yourself a good cry (or ten) and know we're always here for you.

Sending love and hugs,
xo jj

Selma said...

You let it all out. Oh, this is just heartbreaking. I feel so badly for you. You have been through so much already. This just doesn't seem fair. I am so sorry. I will be praying for you and hoping things change.

Webster said...

You and Big Kid can't seem to catch a break over this. It's so unfair. Come here and unload all you need to; That's what cyber-friends are for.

Hope the Cognitive Therapist comes up with a good program for BK. Perhaps it will work wonders.

Crazy Mom Tats! said...

Shit. I'm so very very sorry. You will be in my prayers. It's mighty hard to see your kid hurting and scared like this. And it's not like when he was 5 and you could hug and kiss him and make it all better.

Just keep putting one foot in front of the other. It's all you can do.

Also - the shower is a great place to cry.

hugs for all of you....

Beth said...

My tears at the words “My precious boy” are so insignificant in comparison to yours – to your sadness and frustration – but those words touched the mother in me.
May the Big Kid’s spirit – and yours – remain strong. This is such a heartache, such an ongoing battle.
My prayers and love to you all.

KWombles said...

((())) I'm so sorry. I hope that the cognitive therapy will help. And that you will know you and yours are cared about. The biggest of hugs and lots of positive thoughts being sent your way.

Star said...

I am sorry to hear the news wasn't better. You are such a positive person, I know you will eventually make lemonade out of these lemons. For now, hugs to you and yours.

debra said...

I am sending you good vibes and healing energy. Hoping that the shoes that keep falling are, at least, the right size.
xo

Jennifer Jayhawk said...

I am so sorry. Stunning news. Hopefully time and therapy will show improvement for big kid. Keep us posted. We are all here for support.

Cyber hugs and prayers!!!

Frau said...

I'm so sorry...((Hugs)) I hope there is help through therapy to correct the damage.I know it's hard be strong. Have a wonderful Mother's day.

Karen said...

I am so very sorry, my prayers to you and your family.

You can always cry and let it out here, we don't mind.

Rootietoot said...

Oh AtM, I wish I could DO something! Cry, write, cry, whatever you need to do. I'll be thinking of you.

Jeanie said...

I'm so sorry your news wasn't better. You and BK are in the thoughts and prayers of so many. BK is so fortunate to have you on his side and by his side as he faces these struggles.

TechnoBabe said...

Things might get better though. I hope so for his sake. It is so scary and frustrating for him I am sure. My hubby has bipolar disorder, hospitalized ten times over many years. Last time in 2008 when he got out of the hospital he could not write his name and he could not remember things. He could not do simple things. It took about six months till he could speak fairly evenly without stop and go speaking. He is on meds that help him and today is so much better. It took time and he is still in therapy. Cognitive therapy. I know each situation and individual person are so different. Just thought hearing a similar situation would help you. My hubby said the same thing about being retarded. My heart goes out to you and your son.

Heather said...

Thinking about you and Big Kid today. I am sad that you have to go through all of this, but happy in the way that at least he is here with you. I am trying to look at the brighter side of it all, the silver lining maybe? But I feel your pain as a mother and we never want anything bad to happen to our kids. Hang in there...you are superwomen to me so I know you will make it through this.

Green Girl in Wisconsin said...

I am so sad to read this, so sad to imagine you hearing all of this awful news. Attila, I'm praying for you and your son. Your poor boy.

Sarah said...

Crying with you- praying for you - holding your hand as you walk though this

From Tracie said...

I am so sorry! I will keep praying for all of you!

Ashley's Mom said...

You can spill to us anytime you need to. I wish I was there to give you a big hug. Stay strong and know I am praying for you both.

Jeff D'Antonio said...

I found you through Joanna's blog. I'm so sorry for all that your son has endured (and of course the rest of your family too).

I have a brother who has struggled with cognitive and memory deficits since he was injured in Iraq three years ago, and I understand the frustration he feels when he can't complete the simplest of tasks. He has improved slowly over time, but the slow progress is difficult to watch sometimes.

Sending prayers and healing thoughts to all of you.

Kim Ayres said...

((hugs)) ((hugs)) and more ((hugs))

Rootietoot said...

((hugs))

Mari said...

I'm here from Joanna's blog. I'm so sorry you are going through all this. You are not a baby - you are a Mom, and your Mom heart is broken. Praying for all of you.

Loving My Family said...

:(
Hugs for you. I am so sorry..

Alix said...

Joanna sent me over again and I'm so glad to be here but so sorry about Big Kid's struggles. I can't think of one thing to say to comfort you that hasn't already been said except that I will once again get down on my knees and send up powerful prayers on Big Kid's and your behalf.

Hang in there. We love you.

Nezzy said...

This Ozarks farm chick just popped over from Joanna's place. I sure did not realize that ya'll were still battling this thing. Know that Big Kid is on my heart and in my prayers. Together we will agree that healing is on it's way.

God bless ya'll and I pray your day is filled with warm sunny blessings!!!

Mary said...

Oh dear. I am so sorry. I know, I just know, that you will get through this and that you are so very strong. But I also know sometimes you wish you didn't have to be.

Have a good cry. And then I know you'll dig in and do what needs to be done. I'm praying for you guys.

otin said...

I am very sorry to hear this. I will say a prayer for your son and your family!

Kathy said...

It's okay to cry....have my shoulder. My heart goes out to you and your family and I will send every positive thought I can your way.

Casey Freeland said...

Ah, me. Joanna suggested I come and read about you and your boy. My heart and best wishes go out to you tonight.

Casey

Cheryl said...

I have really big shoulders, and am always here for you to listen. You really need to get your feelings out, you have had to be strong for so long, like the battery for the family, and you need an outlet to just let your sadness, frustration, anger and fears out. The whole thing really sucks.
I'm so sorry that you and big kid have to go through this, but I know you will do what needs to be done and move into the rehabilitative stage. Perhaps, with the therapies, he will regain, much of what he has lost. His is a fighter, that much is clear. And we all know where he gets that from.
You are an amazing mother, I admire you so much. I hope you are able to have a nice Mother's Day. Out of all the Mother's I know, you deserve it the most.
Love and more love.
Cheryl

litzi said...

Hi Attila,
There really are no words to express to you how very sorry I am to read about Big Kid’s latest setback. At this juncture, you have to be grateful for all the improvements he’s made over the past six months and try not to dwell on the disappointments…a lot easier said than done.

My thoughts and prayers are with the entire Attila Family.

Cinner said...

I came over from Joannas blog and have before. I just assumed by now everything would have been okay. I am so sorry for all that you and your family are enduring. your son must be very frustrated as he sees the changes. when I was diagnosed with an illness for a time on the wrong medications I did not know my husbands name, no short term memory. I knew something was drastically wrong, a long story short I have been off work for seven years, but my life is very liveable now. It has to be the hardest thing for you to see, scream and cry in the shower, I so hope for a recovery and all the specialist will be able to do something. you are in my thoughts and prayers. I wish I could do something, words are just not enough

LadyFi said...

You're not being a baby - cry all you need to. I'm so very sad to hear this and want you to know that you have lots of people sending you love and comfort and positive thoughts.

My name is PJ. said...

I began praying as I read. Then I stopped and had a conversation with God.

This is the forum in which you can 'spill it', cry, exhale, etc...and absorb the support and prayers we send your way.

God bless you and Big Kid.

North of 25A said...

I am so very sorry for your son! I will pray for your family every day - really - I will never forget!
Happy Mother's Day!

Kate said...

Sending (((hugs))) to you both

gayle said...

I am so very sorry that you all are having to go through this!! Talk to us and cry all you want...we are here for you!! Praying!!

Heather said...

There are no words.

I'm so very sorry to hear this. It's times like this that my chosen belief that "all things happen for a reason" gets shaky. I hope you and your family are able to find a reason that works for you. And soon.

Sending love and hugs to you, as well as thanks, for sharing your heart with us.

Brenda said...

Adding my prayers to the many being sent your way. Hang in there sweet lady and love that boy with all you've got.

Mrs4444 said...

Stopping by via Joanna Jenkins's blog. I hope today (Mothers Day) was a quiet one on the symptom front. I'll keep you in my prayers...

Hilary said...

I'm here from Joaann's blog and offering my very best thoughts to you and your Big Kid. Keep strong.

Chris H said...

So sad that his illness has had such a bad consequence for him. {{{HUGS}}} to you... you are the best mum EVER.

Valerie Marie said...

Dear M.!
Since a few years now, I feel as a part of this family and reading your post I felt my heart so sad and I cried. I wish you all the strenght you, once again, need ((BK & family)) I send you my prayers and good thoughts all the way from Germany. LOVE YOU ALL

Anonymous said...

It is horrid what happened to Big Kid and it means that you will be faced with a difficult burden of continual trips down the mountain to medical facilities. On the other hand, your family is an exceptional loving and accepting place that welcomes him just as he is and he has a great friend in Kitty who does the same. The good world isn't made up of only perfect college graduates. Everyone has a gift that is needed by all and Big Kid will find his. Let's all keep our faith in him. He is a good and a kind man. He is not retarded. That is a stupid meaningless word.

frigginloon said...

Ah Attila, I'm so sorry you are going through this again.A big hug from the Friggin Loon down under. Once you've finished with all those tears, wipe them away, your son is alive yah! Work with the positives, no matter how small they are.
Oh and another big hug for good luck.

amy said...

Hugs. I'm sure he'll bounce back with time, and he is so lucky to have the support that he has in you.

Jennifer Leeland said...

OMG ATM, I so so so sorry for Big Kid. And I wish I could be there to hand you kleenex or give hugs, whichever you needed.
Since I can't, here's my cyber hug.

Grumpy said...

Hi. I was just passing by through the internet and came upon your blog. This is the first post I read of yours. Like everyone else, I am so sorry for you, for Big Kid and for all involved. But, I can see from your writing that you are a very strong woman and he is a very courageous son and you will make it through this and be better for it. You will conquer this ordeal together and you will look back on these days and smile. Just do your best to stay strong and stay positive. I can't imagine the struggle you both are going through, but I can send you encouragement. I hope the best for you!

Katie :o) said...

Wow... I'm so sorry to hear how much you and your son are going through. We have a beautiful 12-year-old daughter with extensive special needs. We almost lost her as a baby and I still flinch at the sound of an ambulance or helecopter. You have a beautiful way of sharing the painful things. (And a hilarious delivery of the fun stuff!)

Liesl said...

Repeat after me: plasticity! I still have hope that Big Kid will make progress.

xoxo