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#23459 - 12/15/08 11:00 AM Update on TJ. (Cindie Carey/hamilton) Karen's girl
Cindie Offline
Member

Registered: 10/01/08
Posts: 97
Loc: Riverside County, Ca.
Tyler had his open heart surgery as of Nov 4, of this year. he was 2 1/2 mo old. they repaired everything and all was going well til he ran a fever thanksgiving night and we took him back to loma linda (an hour away) where they found an infection of his incision along with the fact his body had rejected the wiring used to close his chest. They tried 3 other types of closures all rejected. he's on a ventilator right now, unfortunately but doing better. they're trying to pull more fluid off his lungs. He's gonna be put back into HBO hyperbaric Chamber treatment.

With EHK (TJ, me, my mom and my gma have it) does anyone know how to combat the horrible effects it has on our skin when he's going in 2x a day and can't have petroleum products on his skin?

Cindie
_________________________
Wife to Carlos and Mommie to TJ, preemie born 1 mo early 8/14/08 with EHK, Down Syndrome, and a BEAUTIFUL personality!

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#23481 - 12/17/08 05:20 PM Re: Update on TJ. (Cindie Carey/hamilton) Karen's girl [Re: Cindie]
Ivy's Mummy Offline
Member

Registered: 10/31/08
Posts: 97
Loc: England
Cindie,

my thoughts are with you and your family right now. I wish Tyler all the very best in getting better.
_________________________
Emma

4 year old girl with Lamellar Ichthyosis

Baby girl unaffected

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#23490 - 12/19/08 03:17 AM Re: Update on TJ. (Cindie Carey/hamilton) Karen's girl [Re: Ivy's Mummy]
brandynsmum Offline
Member

Registered: 08/25/08
Posts: 269
Loc: Connecticut
Thinking of you and your family and especially little Tyler smile
_________________________
My name is Morgan. My son Brandyn was born on 26th June, 2008 in Sydney, Australia as a collodion baby and has been diagnosed with lamellar ichthyosis.

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#23491 - 12/20/08 09:42 AM Re: Update on TJ. (Cindie Carey/hamilton) Karen's girl [Re: brandynsmum]
Cindie Offline
Member

Registered: 10/01/08
Posts: 97
Loc: Riverside County, Ca.
Update: TJ wound up on the ventelator, They also believe he has a bone infection, we thought they were going to take him off it today, but they didnt. his swelling has gone down alot, however he's not any better.

Anyone know of resources in the Hemet California (Socal) area that could help us out in regards to bills and things like that?

We just got an $1100 electric bill in the mail today with a cutoff notice.... so I'm looking everywhere, and HEAP in our area is out of funding.
_________________________
Wife to Carlos and Mommie to TJ, preemie born 1 mo early 8/14/08 with EHK, Down Syndrome, and a BEAUTIFUL personality!

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#23600 - 01/04/09 10:40 PM Re: Update on TJ. (Cindie Carey/hamilton) Karen's girl [Re: Cindie]
Cindie Offline
Member

Registered: 10/01/08
Posts: 97
Loc: Riverside County, Ca.
Just to update. The infection cleared up and altho he's still on the vent they are weaning him off the morphine and the wound is nice and red meaning blood flow is going there.... SO much better! The last time we saw him (several days ago) he was awake and stared at me and carlos the whole time despite being on sedation meds!!!
as for the bills, we are getting caught up and things are going nicely! thanks for the support!
here is the link to TJ's blog:

http://tjsstory81408.blogspot.com/
Cindie
_________________________
Wife to Carlos and Mommie to TJ, preemie born 1 mo early 8/14/08 with EHK, Down Syndrome, and a BEAUTIFUL personality!

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#23609 - 01/06/09 04:00 AM Re: Update on TJ. (Cindie Carey/hamilton) Karen's girl [Re: Cindie]
TMPOL Offline
Member

Registered: 07/30/08
Posts: 44
Loc: Collingwood, Ontario, Canada
Hi Cindie,
Your blog is beautiful. Our prayers are with wee TJ and all the best for 2009.
Cheers
Tara
_________________________
Tara, Rene and Myles
Myles born May 22nd 2007
Lamellar Ichthyosis

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#23610 - 01/06/09 08:31 AM Re: Update on TJ. (Cindie Carey/hamilton) Karen's girl [Re: TMPOL]
brandynsmum Offline
Member

Registered: 08/25/08
Posts: 269
Loc: Connecticut
Cindie, what a darling little boy!! The pictures of TJ are just precious smile I'm glad that he is doing better and please keep us updated.
_________________________
My name is Morgan. My son Brandyn was born on 26th June, 2008 in Sydney, Australia as a collodion baby and has been diagnosed with lamellar ichthyosis.

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#23785 - 02/04/09 07:51 PM Re: Update on TJ. (Cindie Carey/hamilton) Karen's girl [Re: brandynsmum]
Cindie Offline
Member

Registered: 10/01/08
Posts: 97
Loc: Riverside County, Ca.
Got new pics I'm adding soon. TJ's getting social, he likes his picture! lol.... he reaches to it now.
_________________________
Wife to Carlos and Mommie to TJ, preemie born 1 mo early 8/14/08 with EHK, Down Syndrome, and a BEAUTIFUL personality!

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#23794 - 02/05/09 02:22 PM Re: Update on TJ. (Cindie Carey/hamilton) Karen's girl [Re: Cindie]
Cindie Offline
Member

Registered: 10/01/08
Posts: 97
Loc: Riverside County, Ca.
I need advice BIG TIME. You may know my whole story if you've followed my blog/pics... etc. See, according to the social worker at the hospital, I've acted suspiciously from side effects of a medication on a time or two while being at the hospital (due to back pain and pain management, they are trying to find something tha'll work before they start shots or something in my back.)
I NEVER held or helped with TJ during any time I had any side effects. and according to my dr. I had to take the med at a certain time each day. I've been working to find other meds that work without any side effects and that are safe to take and work in small doses...(so I could get off quickly if need be due to any reason.) Well, the social worker from the hospital has asked for my medical records, and pharmacy records which I got copies of , and signed releases, no problems. I've not done anything bad. But due to personality clashes with a charge nurse and a couple nurses who wouldn't have me help with wound changing (even tho, apparently they are sending him home next week.... IF the do.) *they actually leave me in the room alone with the nurse watching the OTHER baby in the room with him, while sitting outside.... doing NOTHING to help me out or even offering support.



or other stuff, it's caused alot of issues (I've kept my cool and tried to either reason with them or accept what they tell me)
they'd told me he'd go home in MARCH or late Feb. it was lies. CPS came by today, with a nurse, and GRILLED me infront of my mom regarding his skin care (for EHK) and his cares for him having down syndrome. welI (Gmom and me) explained everything, and even showed them his medicine preparations (color coded with 2 days worth. a normal day and emergency, with color coded baggies, instructions on time, doseage already prepared... etc.) so anyone could give him a med if I had an emergency and couldn't be home.



The nurse was HAPPY with me and said we've done a D*MN good job at keeping him healthy when he was home. But the social worker even asked me for a friggin drug test where I had to go to a place where addicts from the court systems usually go (not the kind work sends you to) and get WATCHED while I took the pee test! (I have NO issues with former addicts at all.... i'm happy if you've straightened out and I'd be happy to share stories and talk for support as my step dad died of an overdose about a year ago this march....They dont know of that.)



I did it happily, and we got a crib today (instead of a bassinet even tho he's only 10 lbs at nearly 6 months) set it up, and cleaned house. They come out next week and just told me if our house was clean, and his room was clean, and we were prepared for him to come home....we'd be good. We aren't fully unpacked yet with all the problems with TJ... so they took pics of boxes and stuff..



IDK, they make me feel like a bad mom. They consider me either uneducated or unexperienced even at this point in his life where he's been home for 9 weeks total, and we've cared for him for his first 3 months of life DAILY, and nightly.
I'ts 4:30am and I can't sleep from the stress. AF is late due to it also (bloated....but day 31...test BFN which is fine at this point)



His nurse, and teacher from the Reginal center (sp?) are behind us because they have observed us in our home on a couple occasions...



They hadn't told me test results, or anything but told CPS he's coming home next week (I've called and asked 2x while cleaning up the house) all while it's cold and the arthritis in my back is HURTING bad. Icy hot, heat pads, ibuprofen, tylenol... the works to treat it. But nothing to really alter me mentally at all.



I want advice. my mom went thru this with me as a baby (similar reasons..young, special needs kid... etc.)
and my grandmother was gone after also for me mom (same stuff as MY MOM).



They got me so upset I just cried for about 10 min. in front of them as I told them how we cared for him in the NICU for over a month and the nurses didn't even do anything because carlos and I did EVERYTHING but paperwork. They won't consult his old Primaries from NICU (we gave names and shifts) and they aren't consulting HIS derm. who is a specialist in our rare skin disorder about a Gtube yet.



I'm crying now thinking of it. I need support and advice.........(or just kind words)...



Cindie
_________________________
Wife to Carlos and Mommie to TJ, preemie born 1 mo early 8/14/08 with EHK, Down Syndrome, and a BEAUTIFUL personality!

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