Re: Jillie

[Guest guest]

Oh - what a nightmare. I do believe that " this too will

pass. " However, in her mind, anyone that comes near her might do

something that hurts. Can't blame her. From what I have learned

from my non-RSS child, the hitting is the way she is communicating

her frustration and anger at everything that has happened. We were

told that you have to tell her that hitting you is NOT acceptable.

But validate her feelings " I know you are mad -- here is a pillow

and you can hit this when you are mad, but you can't hit people; you

can't hit Mommy. "

The GH shots is another story. Is there anyway you can give them to

her at night while she is asleep for a while? Despite the fact that

they truly are not that painful, the fact is that I am guessing,

although I have NO psychological background outside of the years of

counseling we have undergone (ha), that she is reacting to the " I am

totally tired of all this; leave me alone " feeling. It is over-

reacting, but completely understandable under the circumstances.

Keep us posted. Jenn

>

> Hi Guys,

>

> Thanks for emailing support to us for Jillie to get through her

> various surgeries. She is now 10 days post a tonsillectomy, ear

> tubes, a liver biopsy and an endoscopy.

>

> As per the luck of an ICU nurse with a child in the hospital,

things

> did not go as planned. I was allowed to be with her until she was

> unconscious which was awesome and a first in this the 5th time

under

> anesthesia. She was in the OR for 5 hrs! Apparently she could not

be

> intubated by anesthesia and the attending in ORL had to do it. She

> has a very small unusual airway and is known to be problemmatic

but

> this inability to easily intubate whilst unconscious is scary. In

an

> emergency - unless in a phenomenal hospital, she might not make

it.

> The docs were nervous about pulling out the breathing tube but did

> after giving her a hefty dose of steroids. She was sent to the

PICU

> with one IV line in and 13 failed attempts which were thankfully

done

> under anesthesia! Unfortunately, they had to do several blood

draws

> in the remaining time of our stay. That was another 8 sticks. 21

> sticks in all in 24 hrs. I know how crazy it makes you all having

> your child stuck for IV's. Imagine what is like for me - an expert

in

> IV's and blood draws to deal with this. I was fit to be tied.

>

> Eventually we go home. Jillie eventually falls asleep and starts

with

> the noisy obstructive breathing. Then she starts having apneas

(long

> pauses in breathing) that require constant repositionning and a

lot

> of oxygen to keep her oxygen level up. This went on for 3 nights

> before the swelling in her airway started to go down.

>

> However, she is refusing to eat of drink, is constantly covering

up

> her arms and legs (probably in case she gets stuck again) and is

> hitting me (this is new). And she is no longer the calm for her

> growth hormone shots. Tonight, she was still crying 15 minutes

after

> her shot. Anyone any ideas on how to deal with all this. I was so

> happy to get out of the house tonight and come to work! I think

she

> blames me for everything and I don't know if she'll ever forgive

me.

> I feel so bad for her and guilty for putting her through this.

>

> Anyhow, hope you all are well and staying warm. In New England we

> remain sick of the snow!

>

>

[Guest guest]

Hi . It's Jodi R., 's mom. I am so sorry to hear

about everything going on with Jillie. I understand how you are

feeling though. You are dealing with so much and I really hope

things get better for you. It would be nice if the world would stop

for a little while so you could catch up. I know that feeling, too.

Please keep us updated on how you and Jillie are doing. Can a speech

therapist help you and Jillie learn sign language together???

I hope things start getting better for you. But, I am thinking about

you.

Jodi R.

>

> Hi Everyone,

>

> This is Jillie's Mom ( or Tori). I have been away from the

> boards for some time (pre convention to be exact) for various

> reasons. I sure have missed you all!!

>

> Jillie is now 3.5 yrs old and in preschool (special ed) with a

nurse.

> She still has issues with oxygen requirements, prone to infections,

> 50% GT fed etc etc.. She began walking in July and is trying very

> hard to talk. However, she sounds like she has a cleft palate and

can

> only say certain consanents (f,h,l,m,w) and all vowels. For the

> longest time I have been told that she is either deaf, very

> cognitively impaired or I'm not pronouncing the words energetically

> enough!! Dr H agreed with me that something was probably

anatomically

> askew in her mouth preventing her speaking intelligibly. I took her

> to see a craniofacial team who say that she has some palatal

problem

> or velo pharyngeal insufficiency. It cannot be determined yet what

it

> is exactly as she is too young to cooperate with the necessary

tests

> for accurate diagnosis. However, she will eventually likely need a

> graft/flap to close off the escape of air from her nose (the reason

> she cannot pronounce most consonants). But because she has a small,

> anterior shaped airway, she will need a jaw distraction first.

> Because she has a tenuous airway, no one can operate on her for at

> least 3 years. And then only if her airway normalizes. She may

never

> be able to have the surgery. So basically I'm left with a

frustrated

> 3 yr old who cannot be understood by anyone except occasionally me

> even though she speaks in sentences. So I'm looking into sign

> language and picture communication symbols etc. But I'm so

> overwhelmed. I barely can get to the laundry, bills, medical

> appointments and food shopping. Now I have to learn a new language.

> I'd just lke the world to stop for a while so I can take a breather.

> And Dr H confirmed my suppressed fears last week - that Jillie is

> definitely a severe RSS kid who may also have another syndrome on

top

> of her RSS. She has other issues that are not RSS issues - a

dilated

> aorta, hepatitis (non infectious), tracheomalacia ( a floppy

airway),

> a narrow, anterior airway, a fused 1st and 2nd rib on one side, and

> the speech problem. I don't know if I want to know the other

> potential syndrome. The poor kid!!

>

> On top of all of the above, Jillie's had pneumonia, the hospital I

> work for is changing health insurances, my 39 yr old brother is in

> significant heart failure, my husband is now unemployed, and my

> sister is fighting to revoke her soon to be ex husband's parental

> rights because of his violent tendencies. And life goes on.

>

> However, I remain truly thankful (on this Thanksgiving day) for my

> husband and awesome kids, my job with medical insurance, a house, a

> car and food on the table. I hope you all had a great Thanksgiving.

>

> Hugs,

>

>

>