Tuesday, January 8, 2008

That's it...I'm raising the White Flag........

I am feeling so overwhelmed today. We just had Rhett's vision assessment. He now has such severe nystagmus that he is considered significantly visually impaired. So impaired that we now receive services from the Utah School for the Deaf and Blind.


Wanna guess what caused the nystagmus to become so bad? I'll give you one guess........and it starts with the letter O........

Come on.....I know you know it........

Yup.....his overdose. Or, I guess I should say his lack of O2 when he was overdosed.

So in addition to his chronic lung disease, the bradychardia, the raised pulmonary pressures, and the possible neurological damage, we are now finding out that Rhett has significant vison problems. Nothing that glasses or anything like that will fix. He is permanently visually impaired.

All of these things are linked back to the "incident" as the doctors all like to call it.

All of these things we would not be dealing with if he had not been given a 10 fold overdose of pain medication while under a hospital's care.

So now on top of his PT/OT once a week, his ST twice a month, and all of his other doctor appointments in between, we are adding vision therapy once a week. This will help him learn how to work around his world not coming into focus, and not being able to see the detail of anything unless it is greatly magnified.

This kid needs a blackberry to keep his schedule straight. Today I am feeling like I just want to tell all of the doctors and therapists to go away and leave us alone. I have no idea lately whether I am coming or going. I can't tell you how many times I loose my keys and cell phone in a day. My brain cells are just gone.

You know how in cartoons you see the animals in a pile of rubble with the dust and smoke in the air, and they're waving their white flag?

Yeah. That's exactly how I feel.


Jessica said...

Wow... have you guys ever considered filing a malpractice lawsuit? You guys would definetly win.

BiLlY, sAm, AnD bOyS!!! said...

i know exactly how you feel about wanting to tell the doctors nurses and therapists to just shove it (pardon me) I go through that thought at least once a day. i know we have them for different reasons for our boys but i totally can relate. if you ever need anything - a drink lunch whatever.. just call me.

Kari said...

I'm so sorry Pam!! I don't even know what to say. You must be so..... I was going to say angry but I doubt that even touches the emotion you must be experiencing. sending cyber hugs!!! I so KWYM about telling them all to go away and loosing the keys and phone and purse and everything else not attached to me. I'm surprised I haven't lost one of the kids yet! I am not going through nearly what you have been and I'm a mess. Your inspirational hang in there girlie!!

Michelle said...

Oh my gosh, poor sweet Rhett! I don't even know what to say.

Niksmom said...

Oh, Sweetie! I have walked in those same shoes...all of it except the overdose part. I understand what you may be feeling right now (and maybe even some you might not have gotten to yet...)

When we found out Nik was probably blind in his right eye,I was devastated. I thought of all the things he might miss out on. Then, one day, I was talking to our fabulous orthopedic surgeon (he treats Nik's ortho isses from his cerebral palsy); I mentioned the impairment and how worried I was for Nik. He looked me in the eye and said, "Don't waste your time worrying about him; he'll be fine. He'll adapt and compensate in ways you can't even imagine." At first I was a little put off, but he continued, "I'm living proof; I was born blind in one eye." The man is the most highly respected orthopedic surgeon at a very highly reputed children's hospital and teaches at a major medical school as well.

I took those words and held them close to my heart —taking them out when I felt mad, sad, bad about Nik's vision problems. You know what? He was right. Nik has compensated so well in so many ways that many people don't even realize he's impaired until the look right into his eyes; even then some aren't certain.

I guess what I'm saying (in a long winded way, sorry!) is that it's a diagnosis to help get services that will help Rhett so very, very much. One day you will look at how far he has come and marvel. I know this in my heart and soul. Rhett is a fighter not a quitter; this will not stop him from living his very full and very rich life.

Sending you lots of hugs...and a shoulder to cry on if you need it. xo

Marla said...

I am crying reading this. Rhett has so much going on. I read your post and I cry. My prayers will be sent your way tonight. When I say that I seriously mean it. I can't believe his eye sight is so poor. I don't know how much more you all can take at this point. I hope you are doing okay. Lean on your husband and be gentle with one another. I know when we are at our wits end with everything we tend to be hard on one another. It is strange. But, I hope you can find one another as a support during this time.

All of the endless appointments are more than a full time job and with more children...well, I can not imagine. You are a terrific mother and I will pray your energy level stays strong. Please try and take some time to yourself to process everything. Hugs. Hugs and more hugs.

RK said...

My goodness, Pam. I can totally understand how you're thinking the white flag is the way to go... but I also know how tough you and your bunch is, and I know you'll come out on the other side with Rhett's smile lighting the way!

my--four--sons said...

I am keeping you and your family in my prayers. It all just seems so unfair.

Dragonstar said...

Huge hugs for you Pam. Thanks for taking the time to visit my blog when you have all this going on.
I honestly don't know how you cope. My husband has Aspergers, and it's never been easy as you can imagine. My youngest son (22 now) has had problems, was thought to be schizophrenic then re-diagnosed with psychotic depression. He's pretty stable now on his medication, but I feel he also has mild Aspergers and we still can't get him assessed. There are so many days when I feel unable to face the world, and my problems are so much smaller than yours.
Keep talking through your blog. Even if 'virtual' support is all we can offer, at least you know we care.
Hugs again.

Dragonstar said...

Back again.
I don't know how you feel about blog awards, but I've a 'treasure' award for you if you want it. Just copy it to your computer and post it where you fancy.

Michelle said...

Oh Pam - I am so sorry to read this. Like others, I don't know what to say. You know that I am here if you need me. So sorry that it is so far away, but here nonetheless. Focus on Rhett's grins and giggles, okay, and do call me whenever you need an ear. Love and many hugs...

Kerith Collins said...

I feel so bad for you...but you have alot of bloggy friends to turn to...

Jenny said...

This just makes me sick...I am so sorry that Rhett has to experience all this because of the negligence of others. Ack! I also know that you are a positive person and a fantastic mom and you will make sure all is well! Hugs...

Jenny-up the hill
Gus' Gang

Jeremy said...

Our hugest burdens become our biggest treasures if we can carry them.

It sounds as if your husband is of great help and having a support mechanisim is very important for a caregiver.

Blogging frustration helps, but sometimes so does screaming from the top of a mountain. Yet sometimes we face our problems in solitude....

"LAUGH, and the world laughs with you;
Weep, and you weep alone.
For the sad old earth must borrow it's mirth,
But has trouble enough of it's own.
Sing, and the hills will answer;
Sigh, it is lost on the air.
The echoes bound to a joyful sound,
But shrink from voicing care.

Rejoice, and men will seek you;
Grieve, and they turn and go.
They want full measure of all your pleasure,
But they do not need your woe.
Be glad, and your friends are many;
Be sad, and you lose them all.
There are none to decline your nectared wine,
But alone you must drink life's gall.

Feast, and your halls are crowded;
Fast, and the world goes by.
Succeed and give, and it helps you live,
But no man can help you die.
There is room in the halls of pleasure
For a long and lordly train,
But one by one we must all file on
Through the narrow aisles of pain."

Ella Wheeler Wilcox

It is good to see you are not alone in your battle!

Kei said...

Hugs Pam. I am, for once, at a total loss for words.

Love you girlfriend.

jenjerjack said...

Hi Pam. I don't get to blogging much lately, or reading, but i popped by today and saw your post and just wanted to let you know that you are not alone. My Jackson (with Down syndrome and legally blind) also has numerous medical issues and congenital nystagmus. He uses a seeing eye cane to get around and is further behind that other kiddo's his age with ds because he is still trying to catch up from being a 2 lb preemie, open heart surgery, scoliosis, hypothyroidism, asthma, AAI, and then all the little stuff. :p
There are days when i feel so alone. Days where i wish things could just ease up on him and be a bit easier...and then i see people watch him in awe as he walks down the street pushing his cane. I feel like i could burst with pride after i watched him overcome yet another hurdle thrown his way. Nothing will hold this boy of mine back and Rhett will be the same. Just you wait and see!!
It really sucks with the how and why he has the added medical issues, and i really hope that something gets done because of all you have and will go through because of the mistake the hospital made, but I just know that your little guy will comeout on top showing off what a strong little guy he really is!! :o)
Jo and Jackson

Christine said...

Niksmom's story is encouraging. Rhett is such a precious little boy. A miracle can happen where things don't end up as bad as they seem right now. Blessings on your whole family,especially liitle Rhett.

LeeJo said...

Doggone. Just doggone.

Edie said...

Has your eye doctor mentioned to you about the tenotomy surgery for treating nystagmus? I had it last year and so have many, many children since the first clinical trials. You can hear their experiences and ask questions about it at the American Nystagmus Network Yahoo Group at http://health.groups.yahoo.com/group/ann-list. The surgery doesn't eliminate the shaking but it can reduce it significantly and that often improves vision. I just wanted to mention it because many doctors do not know about it or are just waiting for more and more studies I am also trying to do my part in educating parents and the public about the medical aspects of nystagmus as well as living with the social challenges of living with wobbly eyes.

Good luck to you.