nerves and frustration! EE's update

[harley08]

So very glad he is home with you where he will no doubt get all the love and attention he needs, but it breaks my heart to see a child have to go through all of this sort of pain and suffering. My prayers and blessings are with you!!

[evilstepmother]

4 weeks down and 8 weeks to go (2 until cast change) Eathen smells sooooooo horribly. we are hardly able even be in the same room as he is. He usually just sits on the other side of the room and plays with the flies that he has attracted and his guitars. Dialysis is still at 16 hours daily which is hard on the whole family and his nurse. He is back to a state of insomnia again that I have not seen from him in over a year. This has been rough for both us and Sophi as he yells at us to "COME HERE" all night and it wakes Sophi up. But we will prevail and get through this and return to normal soon I hope. More on these rants later. Dad has promised to have a picture on the computer today so we will see what he does he is not having a good time with this and is very depressed so please keep him in your thoughts and prayers as he is home watching ee and Sophia.

[ODAT]

Hope that while dad won't want to take a break that he is able to. Me and my sis are caring for my mom. right now we have to plan to sleep at her house until she gets the cast off. We have a schedule. I wasn't able to stay during the week but when I saw my sister last, I knew I had to give her a break. It is very important because it can wear you down. Even if he just takes a long hot bath (with bubbles... or epsom salts - the magnesium in the salts is good for you) he will feel refreshed.

Be ready with the cleaning when that cast comes off! Will it be a smaller cast? Do you leave a tv on for Eathen at night? I know the tv puts a lot of people to sleep and if he can't sleep, he can watch.

 

[okarol]

4 weeks down and 8 weeks to go (2 until cast change) Eathen smells sooooooo horribly. we are hardly able even be in the same room as he is. He usually just sits on the other side of the room and plays with the flies that he has attracted and his guitars. Dialysis is still at 16 hours daily which is hard on the whole family and his nurse. He is back to a state of insomnia again that I have not seen from him in over a year. This has been rough for both us and Sophi as he yells at us to "COME HERE" all night and it wakes Sophi up. But we will prevail and get through this and return to normal soon I hope. More on these rants later. Dad has promised to have a picture on the computer today so we will see what he does he is not having a good time with this and is very depressed so please keep him in your thoughts and prayers as he is home watching ee and Sophia.

Smells horrible? Flies? Poor kid. That description makes my stomach hurt.
Is a visiting nurse coming in the bathe and sanitize him? No screens on the windows??
I am sorry. If you're joking I don't think it's funny. And if you aren't then I am really sorry for Eathen.
I can imagine his dad being very down, it's beyond sad.

[twirl]

there are ways to getting rid of flies
how are they getting in his room in the first place
that can not be healthy
if you think he smells, how do you think he feels
he can not get out of the room and get away from it for awhile
I hope you are kidding around
fire that nurse and get one who will do the job for the sake of EE
I'd kill if it was one of my three children
please do not post a photo of EE with flies all around him
I'm hoping you are joking, not a funny joke

[petey]

that poor baby!

[evilstepmother]

the flies are very sad but true.... we rented this "great" house closer to the hospital and its old with cracks and cranies all over, we close one off only to find 2 more. We have those pretty fly strips hanging all over our house, and have been fighting an everyday battle over them... I didn't intend on the picture to be of him with the flies... just to show how well he is doing, he is happy and is figuring out how to turn himself over (woo-hoo! he almost fell out of his chairs this evening). Nothing like keeping things entertaining. We actually have a wonderful nurse, we have been told by the surgeon many times that we won't be able to stomach or be around him when it starts getting close to cast change, that he will smell horrible, we just didn't think it was going to be this soon, we still have 2 weeks before a new cast. they are talking about the cast only going down to his left knee instead of all the way to that ankle, but other than that everything will be about the same. we rubbed baking soda along the edges of his cast on saturday and that seemed to help a lot.... his dad bought gold bond with high hopes, he and the nurse are going to tackle that tomorrow. the major smell seems to be from his back- that kinda scares me.... but we have been told everything is fine, so we can only trust they are right...

Are we the only ones suffering from seasonal allergies??? We are being told there is nothing he can take, is that true? He has two strikes (dialysis and he has had a heart attack before)

[twirl]

3 years old and has had a heart attack
that is so sad
I remember student's telling me their cast would start smelling
a fly swatter works wonders, kills but will not prevent
OMG, he can roll over in his cast reminds me of Dennis the Menace
I think Christmas will be a good time for your family with EE out of the cast
the allegory meds would probably have to do more with the heart attack instead of dialysis
does he also have heart problems
hope the coming new year is better for your family
my second daughter was very sick when she was born
and I remember the emotional and financial stress
she is almost 21 and you could never tell she was sick
but she was
hope you have a better day
Twirl

[evilstepmother]

EATHEN UPDATE
Sorry it has been so long. Hard drive crashed and had to get a whole new computer. We are coming up on the 12 week mark this week actually. We got some bad news and a set back at his first cast change. The Femur bone (they cut 1.5 cm out of it) was not even starting to heal so instead of 12 weeks they added another 6 weeks making it 18 weeks and taking him right up to his 4 year old birthday. EEsdaddy is taking him to the doctor tomorrow morning to check on the status and hopefully they will not add another 6 weeks on top of that. We are still doing 16 hours of dialysis daily and he is going to start schoolas  soon as the cast comes off and we found a place where they specialize in Food aversions in children that is not too far from our house. But I will update you again soon and hopefully will get a new picture on here of him soon.

THANKS
ESM

[Chris]

Sorry to hear about that.
Is he on any meds to help the bones such as Vit D?

[circleNthedrain]

Welcome back ESM!  Hope the doctor has good news tomorrow.

[paul.karen]

WOW
What a heartbreaking read this was.

ESM and Dad you are both truly SAINTS in my book.
And little EE what a cutie even with his meidical problems.

More prayers coming for all of you.
Love gets no stronger then what i have read here.
P&K

[EEsDaddy]

GREAT NEWS Eathen got to come out of his cast for Christmas. We were so excited. The Nephrologist also decided to knock his PD down from 16 hours to just 10 and he seems to be doing really well with the lowered amout as well. He is eating more now because i have started concentrating his formula more as he is able to tolerate it. We are very excited and here is a pic of him in his brace that he has to wear all the time except bath and in the car seat for car rides.  

[pelagia]

This is all very good news.  Please give Eathen a hug from me 

[circleNthedrain]

Beautiful picture....Thank you ESM!  Hope thing will continue to improve in the New Year.

[twirl]

thank  God

what an improve

[willieandwinnie]

  What a beautiful picture. I pray that 2009 will be a wonderful year for your family. 

[monrein]

Here's to hoping that 2009 will be a much better year for all of you and especially for little Ethan.  I love this picture and most of all I love Ethan's smile.   

[The Wife]

To see a child go through something like this is heartbreaking.  I send my love to all of you.   

[paul.karen]

So glad the body cast is off.
I bet he LOVED that first bath...........


Prayers and the best of wishes for all of you in this New year.

  Ethan 

[thegrammalady]

  great news







EDITED:Fixed smiley tag error-kitkatz,Moderator

[The Wife]

Yes, it's great news that he's out of the cast and down to ten hours of dialysis instead of sixteen.  You have a beautiful child.  Give him a hug from me too.