nerves and frustration! EE's update

[evilstepmother]

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!

[monrein]

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.

[okarol]

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.

[Sluff]

Everything will be just fine ESM. Give Eathen an extra hug from all of us at IHD. 

[Danally]

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.

[evilstepmother]

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!!!     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

[circleNthedrain]

Thinking of all of you and sending lots of prayers your way.

[ODAT]

Consider yourself cyber-hugged 

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!

[annabanana]

 

[evilstepmother]

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???

 

[annabanana]

Glad it went well!     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.

[ODAT]

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.

[evilstepmother]

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***

[willieandwinnie]

  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. 

[monrein]

   

[evilstepmother]

I just want to punch something!  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). 

  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

[okarol]

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! 

[monrein]

 

[paris]

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 

[EEsDaddy]

Here is a picture of the cast EE will be in for the next 12 weeks.





Edited: Resized photo - okarol/admin

[EEsDaddy]

thanks ESM just yelled at me and I was in the middle of resizing and you got to it first.

[okarol]

The look on Eathen's face is heartbreaking. Keep fighting little guy! 

[monrein]

Awww.  Hugs to all of you.   

[twirl]

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

[twirl]

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