I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: evilstepmother on September 22, 2008, 02:06:46 PM
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Eathen is having his hip "construction" tomorrow and I'm trying to be strong for everyone- But I'm about to go stir crazy- I can't keep my head in my work where it should be... and I'm had an absolute breakdown when dropping our daughter off at my Aunt's house. She was w/ her bio father all this weekend- my aunts today- my moms tomorrow- and zac's mom Wednesday through Friday- and then back w/ her bio dad for the weekend. It seems like such a long time to be away from our 22 month old- but the current priority is EE's surgery- which he is in his room and entertaining all of his nurses. Everyone has asked if we have prepared EE for this, and we have as much as we could explain to a 3 1/2 year old that he is going to have another surgery but this time when he wakes up he will be in a full cast from UNDER ARMS to Feet. I have such a fear that he will wake up from the surgery, realize that when we told him he wouldn't be able to move and have to be really still- that that was true- and completely hate us!! Or just be so angry- I'm freaking out about the temper tantrams and when Sophi does get home from her extended visiting and she gets to get down and play as she pleases- how will we handle this???? I'm trying to be a good cheerleader from work- but I have so many questions and just want to be there!!!!!
We can't afford for me to be there to just sit and down nothing- I don't yet have vacation but am able to take the time if I want- I have some awesome bosses that have a child that has beaten the odds (MD) and is now 29 years old!!!!! That would let me leave in a heart beat- and I have to leave it at I will be on call and if anything major happens- get there as soon as I can (its 30 minutes to the other side of Dallas to get to Children's!)
OK- so this is just broken and hard to read I'm sure, I will try and get my shit together and make more sense later- back to work!
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Just remember to keep breathing and putting one foot in front of the other. You'll deal with what comes up as it arises. Definitely a tough time right now in your family and I hope all goes as well as possible. :cuddle;
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Does your state have a Paid Family Leave Program?
This is from California:
Workers who participate in the State Disability Insurance (SDI) Program are entitled to a maximum of six weeks of partial pay each year while taking time off from work to:
* Bond with a newborn baby, adopted or foster child (both parents)
* Care for a seriously ill parent, child, spouse or registered domestic partner
Most workers will receive approximately 55% of their pre-taxed weekly wage, up to a maximum of $917 while on leave.
The Paid Family Leave Program is administered by the State of California Employment Development Department (EDD) a state agency, not the employer.
Eathen's dad should qualify for time off based on this. As you are not the parent or step-parent I doubt you could get time off.
My heart breaks for Eathen. Being the mom of a sick kid with 3 other kids at home I can imagine how hard it will be for him. When will he get released from the hospital? How long will he be in the cast? Will he be able to bathe? What about using the bathroom?
I would ask about getting a visiting nurse to come help with some of this. Ask the hospital social worker for assistance and referrals.
If it were me I would try to not bounce your daughter around, but instead have friends and family come in to take shifts staying with Eathen and helping him get through the hospital stay. Same with when he gets home. Have people that you and his dad trust come in, spend time with him, and give you a break so you can take your daughter out to the park or for a play date.
This is so much for a child so young to endure. I hope he gets lots of hugs and smiles.
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Everything will be just fine ESM. Give Eathen an extra hug from all of us at IHD. :grouphug; :grouphug;
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Does your state have a Paid Family Leave Program?
This is from California:
Workers who participate in the State Disability Insurance (SDI) Program are entitled to a maximum of six weeks of partial pay each year while taking time off from work to:
* Bond with a newborn baby, adopted or foster child (both parents)
* Care for a seriously ill parent, child, spouse or registered domestic partner
Most workers will receive approximately 55% of their pre-taxed weekly wage, up to a maximum of $917 while on leave.
The Paid Family Leave Program is administered by the State of California Employment Development Department (EDD) a state agency, not the employer.
Eathen's dad should qualify for time off based on this. As you are not the parent or step-parent I doubt you could get time off.
My heart breaks for Eathen. Being the mom of a sick kid with 3 other kids at home I can imagine how hard it will be for him. When will he get released from the hospital? How long will he be in the cast? Will he be able to bathe? What about using the bathroom?
I would ask about getting a visiting nurse to come help with some of this. Ask the hospital social worker for assistance and referrals.
If it were me I would try to not bounce your daughter around, but instead have friends and family come in to take shifts staying with Eathen and helping him get through the hospital stay. Same with when he gets home. Have people that you and his dad trust come in, spend time with him, and give you a break so you can take your daughter out to the park or for a play date.
This is so much for a child so young to endure. I hope he gets lots of hugs and smiles.
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Eathen's dad doesn't work- for us to keep benefits for eathen, he would only be able to work 20 hours a week, for min. wage- then add in daycare costs and gasoline- he wouldn't be making any money- So Sophi's "daycare worker" is at the hospital this is why she is traveling all over, and we live close but not close enough to any family to drive her back and forth while I'm at work- I would be driving 4hours a day just to drop her off- go to work, go pick her up and back home... Sadly we have just moved to where we live currently and have just recently settled at a church, so having close church family to help out isn't really an option there either...
EE's in surgery this morning at 8am- the only update I have received it that so far he is doing great!!! :guitar: He will be at the hospital a until at least Thursday- maybe longer depending on Eathen, but Thursday is the soonest. He will be in a cast from underarms to feet for 12 weeks or more depending on how well he heals. Unsure about bathing- and they will cut a whole out for his gbutton- dialysis and bathroom needs. We do have a nurse 40 hours a week, that should be helpful when he gets home
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Thinking of all of you and sending lots of prayers your way.
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Consider yourself cyber-hugged :cuddle;
Sounds like you are doing the best you can being between a rock and a hard place. That's actually my saying when someone gets mad at me for not doing something. I have had to leave work at the drop of a hat many times in the past two years. That has to ease your worries a bit - having an understanding employer.
I'm sure your husband isn't online these days - give him a hug from all of us!
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:grouphug;
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He has tried to get on several times and his laptop will not let him on IHD- not sure why, I can check it from work and he can't at home- but thats besides the point!
UPDATE: Eathen is out of surgery- haven't seen him yet- but relayed information is that it went really well- and he will be in a laying down position for the next 12 weeks!!!! yikes!!!!!!!!!! They said if he had been in a sitting position more than likely his hip would have popped out of socket from the backside while in the cast-
great, now how are we supposed to get him around?????????
;musicalnote;
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Glad it went well! :clap; Yay EE!!!
Wish I could offer advice on getting him around..that's a hard one. Maybe just give up the idea of getting him around and get cozy wherever he lands.
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Good idea annabanana. Build him a 'fortress.' Put mirrors up at different angles so he can see what's going on or just to watch tv. Play his favorite videos and introduce him to new ones. Nature videos are fun for kids.
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Ugh- I'm getting so frustrated- I feel like such an outsider having to be at work and not able to be there, I get information 2nd hand and have no clue as to whats going on half the time-
I did get the update that they will provide a harness to transport him in the car and to go by a bean bag chair for him to hang out in....
This morning when I dropped homemade cookies off for hubby and the nurses, he was in pain!!! I could see it in his eyes, he hurt and wasn't happy, he had a coughing spell that lead into yelling and screaming the movement hurt too much. In the most pitiful, shaken up, uncomfortable voice he asked if he could get out of the cast now, it seems/ feels like he thinks he is in trouble and this is the punishment???? ***I'm Heart Broken***
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:cuddle; evilstepmother. I'm so sorry. It is so hard to watch any child in pain. My thoughts and prayers are with you and your family. :grouphug;
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:grouphug; :cuddle; :grouphug;
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I just want to punch something! :boxing; I feel so helpless and useless! I can't do anything and I keep wishing there was more that I could do! There are two iv's one on his left arm (close to his hand) and one on the right hand- causing both hands to be taped up (with plastic covers) I understand the covers not wanting to lose the iv-but only one hand is hooked up, the other one is just in case... but how is that fair? he already thinks he is in trouble w// the cast can't they give up at least one hand? And still no feeds, is this normal? He has thrown up a lot today- one would think because of medication and nothing in his stomach, but maybe not, who knows! they up-ed to tylenol3 from just Tylenol and is still on the morphine type drug that (but not its the stuff that is safe for him so that we don't have another heart attack on our hands).
:thx; for all of the support and well wishes... are we aloud to post pictures? we have a pic of him in the cast.... but didn't want to cause problems
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It sounds like hell, poor kid. I hope his dad is demanding plenty of pain medication, I would be paging the doctor directly if my kid was in pain.
Poor little guy, this is more than most adults have to endure - and he's so very young. UGH! :'(
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:grouphug;
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This makes me cry. Poor little guy. These are the times I just want God to give me the pain and let that sweet boy be free from all of this. Kids shouldn't have to suffer and there is nothing worse than seeing your child in pain. I am sorry. Hugs to all of you :grouphug;
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Here is a picture of the cast EE will be in for the next 12 weeks.
Edited: Resized photo - okarol/admin
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thanks ESM just yelled at me and I was in the middle of resizing and you got to it first. :oops;
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The look on Eathen's face is heartbreaking. Keep fighting little guy! :cuddle;
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Awww. Hugs to all of you. :grouphug;
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EE's dad
your child is blessed to have you for a dad - always be there for him-- does he ever see his mom -
Missy was very sick at birth and was in the hospital for the first three months of her life
she went home gravely ill but I never gave up
I would not let them put a feeding tube in her
I force feed and and put something in her bottles that increased calories -- can't remember what is was
I did not make her play basketball with a sheild on
she has one lung
look at her on the my family post
she is beautiful
star basketball player and drill team officer
I used to take missy to the doc every other day
and I had a four year old
and then when Missy was 9 months
I got pg with Allen
I know it is hard
but your children are everything
he is a cute little guy
missy is 20 now
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I just saw the photo with him in his body cast
pm me your address and let me know something he likes
my son always liked trucks and pokie mon
I would like to send him a card and something
children love surprises
can he eat anything I could send him
like fruit snacks
twirl
OMG
I would be mad too, if I had to stay in that cast
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:grouphug; I'm sitting here crying looking at Eathen in the horrible cast. That has got to be hard when he doesn't understand why and probably can't explain the pain he is experiencing. I'll pray the 12 weeks goes flying by for him and you. Please keep us updated. :cuddle;
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so stepmom and dad pm me your address ( I do not want to call you evil)
I was thinking EE will be in the cast Halloween and Thanksgiving and close to Christmas
I'd like to send him a little stuffed toy or something
and I will send your daughter something too
need to include both children---- I was the heart surgery patient when small and got things and my twin never
and don't worry this makes me happier than you
I want to do something
can't stop looking at EE and he is crying
breaks my heart
love to you --- stepmom, daddy, EE, and big sister :waving;
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Beautiful post Twirl.
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I can't imagine how hard this is for all of you. Your family wil be in my prayers.
I live close to Dallas, so if there is anything you need, let me know. :grouphug;
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So sad...
Make sure he has everything he loves around him.
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yes- he will be in a cast through Halloween (I'm thinking he should be a mummy- whatcha think??? lol) (have to laugh to keep from crying) and thanksgiving and Sophi's 2nd birthday, he will be off at the soonest on dec 17th- so hopefully he will be out of it for Christmas... he loves music and Elmo and "fraggie rock" (known to others as fraggle rock- an oldie but a goodie!) He has already been spoiled with TWO new battery operated guitars (little tykes and something similar) one from his home health nurse and one from some church members.
His feet were very very swollen this morning and they ended up having to cut slits in the legs of the cast to help the swelling go down. Things seem to be better now... I'm not happy to be here at work... :banghead; but I'm sure ee is glad I'm not there- I kept lotioning his feet last night, and it was good w/ the left one but very evil eyes when I would do his right foot. His daddy keeps calling the cast his robot legs- and when I made another trip to the store last night (seems like we always need something) but found some transformer house shoes and thought those were just too perfect w/ his daddy calling the cast robot legs!!!!
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I'll continue to keep all of you in my thoughts and prayers. :cuddle;
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Update: :guitar:
Eathen is moving and grooving- I came up last night and sent dad home so that he didn't have to go 5 full nights on this WONDERFUL fold out chair :sarcasm; in the mean time I wasable to sleep a few hours before he decided he was bored and unhooked his "speed bump" (feed pump) from his gbutton. We are now on a new rotation of nurses and I'm being harassed about then not getting any cookies- so I guess I get to do that when I get home- we have been dealing with a whole lot of swelling! It's been miserable and and mainly in his right foot but I'm starting to notice it more in his face also. (The charge nurse seems to hate me for some reason... but again besides the point) Wednesday night they were talking about cutting the cast even more that the swelling had gotten so horrible. EE was repositioned and then we started pd for the night- let me tell you, Dad just about lost it when his first drain pulled off 486 (his day dwell is only 250) Then he continued to pull off over night a total uf of 618- altogether pulling off over 1000 more than normal (should be) at this point however he was still on iv only and hello! So they ended up not putting a day fill in on Thursday or Friday and that has seemed to help alot. He still hasn't pooped and hasn't handled a full bolis yet. A Dr just came in and said that as soon as those two things happen and we feel commfortable about things we can go home... That the neph was thinking maybe Monday but he (the rounds Dr) thought sunday could happen if EE's up to it. well, her just got some more drugs and looks as though he might be sleepy- aww hopefully I get to go back to sleep.
More later- hope y'all are having a wonderful weekend!
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I have been away for a couple of weeks and I am still catching up with the posts.
I am greatly saddened to learn about Eathen's trials and the most recent development that required the cast. I have very little experience with this sort of challenge in life, so I can offer no advice. I hope that each of you can find the strength you need to make it through these difficult times, and that you have enough love and support from family and friends.
I am privileged to know an amazing family of special needs children who have thrived despite the odds. ESM - if you can track down this movie you can learn more about the Tom family and the woman who binds them together. Susan Tom is a loving, but no nonsense kind of person, who has helped her kids to far surpass expectations.
http://en.wikipedia.org/wiki/My_Flesh_and_Blood_(film)
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:banghead;
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you have to bake cookies ???
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hahahaa, yes since last Tuesday I have made over 15 dozen cookies, 10 of which went to ee's daddy and the nurses. The first 5 dozen were from lack of sleep and nightmares about everything, and 2nd 5 dozen for the nurses was because of shift changes not getting any of the first set....
:yahoo; :yahoo; but eathen is home and doing good!!!! he got home about 6pm this evening :2thumbsup; :2thumbsup;
more later...
EDITED: Fixed bold tag error - okarol/admin
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:waving; Hey Eathen!
:cuddle;
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Glad he's home. :waving;
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:yahoo; Glad Eathen is home. Keep us posted. :cuddle;
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:bandance; :yahoo; :2thumbsup; :clap; :cheer: :bandance; :yahoo; :2thumbsup; :clap; :cheer:
:flower; :flower; :flower; :flower; :flower; :flower; :flower;
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can't beat pelagia's post. I'm very glad he's home! Things will be better now.
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EATHEN UPDATE!!!!!!!!!!!!!!!!!!
He has been in the cast for about a week and a half now. I for the first time was able to change a diaper without getting it on the cast YAY GO ME!!!! :bandance; :bandance; I am still a little frustrated that he is still requiring 16hours daily on 2.5% (the strongest they allow him to have.) He is pulling off almost 800uf (regular is around 300) and his I drain are 275-300 (regular are 100-150) :rant; Sorry. just had to vent about stuff. Besides that he is adapting well and goes for first x rays on Tuesday at 10A. I will let you know how that goes and please pray for us this weekend while we have Sophia and EE both with no nurse and tired parents.
Til Next time
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So happy to hear the positive news. :flower;
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We'll be surrounding you this week end with good thoughts and lots of prayers for all four of you :grouphug;
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:grouphug;
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I know how good cyber hugs feel :cuddle; so hard to see a child down. You all are in my prayers.
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:grouphug; and :bunny: for the babies.
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EATHEN UPDATE!!!!!!!!!!!!!!!!!!
He has been in the cast for about a week and a half now. I for the first time was able to change a diaper without getting it on the cast YAY GO ME!!!! :bandance; :bandance; I am still a little frustrated that he is still requiring 16hours daily on 2.5% (the strongest they allow him to have.) He is pulling off almost 800uf (regular is around 300) and his I drain are 275-300 (regular are 100-150) :rant; Sorry. just had to vent about stuff. Besides that he is adapting well and goes for first x rays on Tuesday at 10A. I will let you know how that goes and please pray for us this weekend while we have Sophia and EE both with no nurse and tired parents.
Til Next time
Hey Daddy, any chance of a updated photo? Whenever I look at the one in the hospital I feel like crying.
Thanks and good luck this weekend! :cuddle;
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Lots of hugs to you, Ethan and your family!! Hang in their hon!
Lori/Indiana
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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!! :grouphug;
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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.
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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.
:cuddle;
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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.
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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
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that poor baby!
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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)
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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
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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
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Sorry to hear about that.
Is he on any meds to help the bones such as Vit D?
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Welcome back ESM! Hope the doctor has good news tomorrow.
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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
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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. :bandance; :bandance; :bandance; :bandance; :bandance;
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This is all very good news. Please give Eathen a hug from me :cuddle;
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Beautiful picture....Thank you ESM! Hope thing will continue to improve in the New Year.
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thank God
what an improve
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:yahoo; What a beautiful picture. I pray that 2009 will be a wonderful year for your family. :cuddle;
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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. :flower;
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To see a child go through something like this is heartbreaking. I send my love to all of you. :grouphug;
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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.
:waving; Ethan :waving;
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:clap; :clap; :clap; :2thumbsup; great news
EDITED:Fixed smiley tag error-kitkatz,Moderator
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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. :cuddle;