Glad Ian is home/ I know your pain

[Guest guest]

H- I'm glad Ian is home. I haven't been on-line much either. Dasia continues to

lose weight, I understand your sadness. Today is the 1st day she has eaten, only

about 1 ounce, in 5 days. Before that was bad enough, for the last 6 or 8 weeks,

she cut back to 1/2 cup of food twice a day when she first started losing. She

drinks about 10 oz of suppl. drink each day, so all of the frantic calls I've

made, have fallen on deaf ears, since she's not dehydrated. Her doctor and

nurses are gone until Tue, I did get her 2 appts moved up because of it, Endo is

now on 1-04 and Devel Ped 1-10, so we can get something figured out. Her weight

for length has dropped off the curve she had going. So I made her first GI appt

beggining of Feb. From what I understand it is a team decision for the g-tube.

I'm hoping someone will just say she needs it. This feels like a slow painful

road until we finally succumb. I can't think of anything worse than going

through this every winter for the next few years,

then wonder if she's getting enough calories for the GH to work optimally. It's

just too much anxiety, especially since I've realized the potential problem with

her head circumference. I hope I will get someone on our side, I know in their

eyes, it's the last resort, and I'm afraid I will meet with resistance.

Especially since we haven't tried Periactin yet. I just want all these weight

and feeding problems over with, even with Periactin, I can't imagine Dasia

gaining the POUNDS she needs to start GH. Just sad, unsure, and confused. I hope

I will feel better after her appts, that her Drs. will be decisive, instead of

wanting to wait it out, for her to deteriorate worse first. To be on a slow

decline for the last 2 months, will hopefully be enough to have a sure opinion.

Mom to Dasia

advocate22003 wrote:

I've finally had a moment to review the listserve for the last

couple of weeks. Since 's croup around the 16th - life has

been a little hectic around here.

First, thank you Jodi Z for taking the time to keep everyone posted

on Ian's situation at the hospital. Thanks too to all those who

responded with such heartfelt and encouraging words - it really

meant alot to me.

I've just discussed something with my husband I think would be

appropriate for you to hear. He reminded me that during very

stressful times in my life (not always sad - such as when my son

was born) I tend to close off my life around me. Maybe

it's a mechanism to protect myself from further pain, stress, fear

or other difficult feelings. Such as in the case of 's

birth - although a joyous occassion - it was the overwhelming sense

of emotions that caused me to build a brick wall around me.

I've built that wall again. I need it. I'm shutting out the world -

I just don't have the energy to talk to anyone or think about

anything else except for my son's, Ian's health needs, my wonderful

and supportive husband and try to enjoy what's around me. It's so

hard to think about everything going on with Ian. I'm exhausted and

worn out mentally. I'm sad.

I went from having a child that ate 2-3 meals a day, supplementing

with Nutren - to having an NG tube-fed boy, who won't eat much in

the way of any food, who's angry at me - for the obvious (hospital

stay), and to the fact that I feel like we are only starting down a

path that proves to be more challenging and scary - to be honest.

We have a new Endocrinologist appointment coming up on January 6th

along with his upper GI tests the same day. I'm hoping to get the G-

tube surgery scheduled within a week or two after the tests.

I know this is all no big deal. Things could be worse - we saw that

at the hospital and we are very fortunate. Still, it makes me sad.

It's so hard fighting for your child's healthcare. It was so

frustrating getting to a point where we collectively decided things

for Ian - it was just exhausting.

Anyway, we had Christmas today. It was very nice. The boys had a

great time and I even made a nice dinner at the dining table. My dh

sais I haven't smiled in over a week. I think I've faked a laugh

here and there and of course, I forced myself to smile today - but,

he knows the difference. It will happen. This overwhelming feeling

will get better and in a couple of weeks - I'll wonder what was such

a big deal.

Thanks again for all your sweet thoughts, e-mails, posts and advice

during our stressful time. I VERY much appreciate it. If I don't

hang out and post on the listserve for awhile - please don't take

offense. I just don't have the energy. I care about you all and

hope everyone is doing okay. I'll check back soon.

- H