Off to Philadelphia - Subaru Enthusiasts Car Club of the Sierras

100_Percent_Juice · 2007-05-22, 06:14 PM

Well ive spent the last 2 weeks at renown hospital with my son and now were flying out to the childrens hospital in philadelphia. Elijah has something called hyper insulinism which there are only 100 cases a year in the US, so needless to say I feel pretty special. Basically its the opposite of being a diabetic, your pancreas makes insulin all the time reguardless of whats going on. So your blood sugar goes down to nothing. We never noticed any symptoms due to the fact that the symptoms are...irritability, sleepiness, lethargy, excessive hunger. I mean he is 5 months old, what baby isnt like that. The reason we took him in to the hospital 2 weeks ago was because he had a seisure infront of my wife and I. It was probably the worst moment of my life thinking that my only child was about to die.

Renown hospital basically knows absolutely nothing about the condition so they have just been doing their best to keep him stable. hes been poked and has had more IVs then my whole family has ever had, his blood sugar needs to be tested every other hour, he stopped eating so they had to put a tube in his nose, he would throw up anything we gave him through the tube, the vein in his arm collapsed so fluid filled his arm until it was rock hard, so then they had to sedate him and put a catheter in his groin artery, he got an infection through the catheter in his leg so they had to sedate him and put it in the other leg, due to antibiotics and other meds he has been throwing up all day weather we try to feed him or not. Currently he has an IV that is providing glucose to keep his blood sugar stable and then a second IV to provide protein and other things.

We have been trying to get to the hospital in philadelphia due to the fact they are the only hospital in the country that knows what they are doing and can perform the appropriate surgery. We have been unable to go for several reasons: Our health insurance didn't want to approve the $37k flight to get him there, we have been waiting for results on an insulin test that labcorp botched a week ago, then said they would do it again because they still had the samples. Today the doctor came in and said "yeah the lab called and said they didnt have enough of the samples left so they couldnt do the test". It took them a damn week to tell us that LabCorp FTL. So finally the hospital in phili said F that were coming to pick him up, got the insurance to aprove it and so we are flying out tomorrow. My wife can fly with him and I got a ticket on american. I was feeling pretty good that we are finally going to get it resolved until they said to expect to be in Phili for 4-6 weeks. So it looks like I will be staying in the Ronald McDonald house for a while. Just figured I would tell everyone. See you all when i get back.

Dean · 2007-05-22, 06:33 PM

Good luck to you and your family. Glad you found some doctors that know what tehy are doing, and want to help.

Let us know if there is anything we can do while you are gone.

MattR · 2007-05-22, 06:37 PM

Wow, big props to the Philly hospital for taking that positive step. good luck to you.

JC · 2007-05-22, 06:46 PM

That's crazy, I hope he gets better.

tysonK · 2007-05-22, 06:55 PM

He sounds like a tough little guy. I hope he gets the full recovery as soon as possible.

wrxkidid · 2007-05-22, 07:20 PM

bummer man. thats good that the hospital in philly stepped up. i hope the lil guy gets better soon. just like dean said if theres anything we can do let us know.

sperry · 2007-05-22, 08:19 PM

That's a bummer of a situation. The good news sounds like they'll be able to patch the little guy up, and he so young it won't be a big deal event in his life.

Are you going to the Philly Children's Hospital? I think that's where my cousin when when he was diagnosed w/ cancer (age 16 or so). They seemed to do a good job, as he's pulled through, including some of the weird complications he had.

Like everyone else is saying, good luck!

khail19 · 2007-05-22, 08:29 PM

Good luck Joel. Best wishes for your baby and your family.

AtomicLabMonkey · 2007-05-23, 03:22 AM

I wish him the best of luck.

k-dogg39 · 2007-05-23, 06:18 AM

Best of luck to you and your family.

MPREZIV · 2007-05-23, 06:23 AM

That's rough man. Sorry to hear, but glad that there's someone out there that's willing to help.

cody · 2007-05-23, 07:41 AM

Sounds like things are looking up at least. Good Luck!

ScottyS · 2007-05-23, 08:07 AM

Man, that's got to be hard. It's bad enough for me when my little guy twists an ankle. Hope your baby and family hold up under these dark times.....they don't last forever.

Libila · 2007-05-23, 03:50 PM

I wish the best of luck to your family.

Nick Koan · 2007-05-23, 03:58 PM

Good luck man

100_Percent_Juice · 2007-05-23, 04:16 PM

Leaving Reno...

in the airplane.

NevadaSTi · 2007-05-23, 04:24 PM

All the best of luck to your little baby. I hope and pray that everything goes well for him.

Kevin M · 2007-05-23, 05:19 PM

Safe travels guys. Hope everything goes well in Philly.

Emboyoyo · 2007-05-24, 03:25 PM

Aww that sucks!
That's kind of what happened to me when I was 4, except I did die, my kidneys shut down and my right lung collapsed. I had e-coli and was in the hospital for a month and in bed for three months with an IV. I had to get my blood sugar checked every hour and I threw up everything I ate. Now I have damaged kidneys and a damaged gallbladder.
Best of luck to you!!

2007-05-22, 06:14 PM	#1
100_Percent_Juice (40 percent vodka) Real Name: Joel Join Date: Oct 2006 Location: Reno, NV Posts: 4,446 Car: 2004WRX Class: Baby-Hauler/GroceryGetter	Off to Philadelphia Well ive spent the last 2 weeks at renown hospital with my son and now were flying out to the childrens hospital in philadelphia. Elijah has something called hyper insulinism which there are only 100 cases a year in the US, so needless to say I feel pretty special. Basically its the opposite of being a diabetic, your pancreas makes insulin all the time reguardless of whats going on. So your blood sugar goes down to nothing. We never noticed any symptoms due to the fact that the symptoms are...irritability, sleepiness, lethargy, excessive hunger. I mean he is 5 months old, what baby isnt like that. The reason we took him in to the hospital 2 weeks ago was because he had a seisure infront of my wife and I. It was probably the worst moment of my life thinking that my only child was about to die. Renown hospital basically knows absolutely nothing about the condition so they have just been doing their best to keep him stable. hes been poked and has had more IVs then my whole family has ever had, his blood sugar needs to be tested every other hour, he stopped eating so they had to put a tube in his nose, he would throw up anything we gave him through the tube, the vein in his arm collapsed so fluid filled his arm until it was rock hard, so then they had to sedate him and put a catheter in his groin artery, he got an infection through the catheter in his leg so they had to sedate him and put it in the other leg, due to antibiotics and other meds he has been throwing up all day weather we try to feed him or not. Currently he has an IV that is providing glucose to keep his blood sugar stable and then a second IV to provide protein and other things. We have been trying to get to the hospital in philadelphia due to the fact they are the only hospital in the country that knows what they are doing and can perform the appropriate surgery. We have been unable to go for several reasons: Our health insurance didn't want to approve the $37k flight to get him there, we have been waiting for results on an insulin test that labcorp botched a week ago, then said they would do it again because they still had the samples. Today the doctor came in and said "yeah the lab called and said they didnt have enough of the samples left so they couldnt do the test". It took them a damn week to tell us that LabCorp FTL. So finally the hospital in phili said F that were coming to pick him up, got the insurance to aprove it and so we are flying out tomorrow. My wife can fly with him and I got a ticket on american. I was feeling pretty good that we are finally going to get it resolved until they said to expect to be in Phili for 4-6 weeks. So it looks like I will be staying in the Ronald McDonald house for a while. Just figured I would tell everyone. See you all when i get back. __________________ "A power nap is when you sleep on someone who is weaker than you." - Dimitri Martin

2007-05-22, 06:33 PM	#2
Dean Señor Cheap Bastarde Real Name: Dean Join Date: May 2003 Location: $99 Tire Store Posts: 9,294 Car: $.04 STI Class: Fast,Cheap & Reliable=STI Deal, did somebody say Deal? Oh, Dean, yeah that's me.	Good luck to you and your family. Glad you found some doctors that know what tehy are doing, and want to help. Let us know if there is anything we can do while you are gone. __________________ I am a Commodore PET --- Now get off my lawn you kids...

2007-05-22, 06:37 PM	#3
MattR El Matador Real Name: Matt Join Date: Dec 2002 Location: Reno, NV Posts: 10,660 Car: 2012 Toyota Tacoma Class: ?	Wow, big props to the Philly hospital for taking that positive step. good luck to you. __________________ "Dallas..We have a problem.”

2007-05-22, 06:46 PM	#4
JC Ask me about dubs! Real Name: JC Join Date: Dec 2002 Location: Orange, CA Posts: 2,895 Car: 2013 Triumph Speed Triple R	That's crazy, I hope he gets better. __________________ Actually, I am a rocket scientist.

2007-05-22, 06:55 PM	#5
tysonK warehouse SECCS Join Date: Mar 2003 Location: SoCal... Posts: 6,253 Car: 04 Evo 99 Cadillac Class: street de le mod	He sounds like a tough little guy. I hope he gets the full recovery as soon as possible. __________________ Anjali? Anjali?

2007-05-22, 07:20 PM	#6
wrxkidid EJ205 Join Date: Jan 2007 Location: Incline Village, NV Posts: 1,232 Car: 1999 Jeep Grand Cherokee Ltd. 5.7l Class: None :/ Cory, just put a 4g63 in it.	bummer man. thats good that the hospital in philly stepped up. i hope the lil guy gets better soon. just like dean said if theres anything we can do let us know. __________________ Mosey down the road.

2007-05-22, 08:19 PM	#7
sperry The Doink Real Name: Scott Join Date: Nov 2002 Location: Portland, OR Posts: 20,335 Car: '09 OBXT, '02 WRX, '96 Miata Class: PDX/TT-6 The way out is through	That's a bummer of a situation. The good news sounds like they'll be able to patch the little guy up, and he so young it won't be a big deal event in his life. Are you going to the Philly Children's Hospital? I think that's where my cousin when when he was diagnosed w/ cancer (age 16 or so). They seemed to do a good job, as he's pulled through, including some of the weird complications he had. Like everyone else is saying, good luck! __________________ Is you is, or is you ain't, my con-stit-u-ints?

2007-05-22, 08:29 PM	#8
khail19 EJ205 Real Name: Khail Join Date: Dec 2002 Location: Reno, NV Posts: 1,769 Car: 2016 VW GTI Meets? We have meets?	Good luck Joel. Best wishes for your baby and your family.

2007-05-23, 03:22 AM	#9
AtomicLabMonkey Nightwalker Real Name: Austin Join Date: Dec 2002 Location: Oshkosh, WI Posts: 4,063 Car: '13 WRX YGBSM	I wish him the best of luck. __________________ "None of you seem to understand. I'm not locked in here with you.. you're locked in here with me."

2007-05-23, 06:18 AM	#10
k-dogg39 Little Slugger Real Name: Kevin Join Date: Jan 2007 Location: North Lake Tahoe, NV Posts: 777 Car: 05 WRB STI Wagon/00 BRP GC Sedan Class: 39 TSM I'm not crazy, I'm just passionate!	Best of luck to you and your family.

2007-05-23, 06:23 AM	#11
MPREZIV Token Real Name: Le Stig Afrique? Join Date: Jun 2005 Location: sitting next to a big yellow box Posts: 3,589 Car: 2001 Impreza 2.5 RS Class: 05 TDSP No, I won't work on your car. F your car*	That's rough man. Sorry to hear, but glad that there's someone out there that's willing to help. __________________ "...these condoms have a topical anesthetic to reduce sensitivity, so you can last longer. What a paradox. You can't feel a thing, but you can f*ck for HOURS..."

2007-05-23, 07:41 AM	#12
cody Candy Mountain Real Name: Cody Join Date: May 2005 Location: Californication Posts: 7,751 Car: 03 Pussy Wagon, now with more pink! Class: TESP OMG Internet!	Sounds like things are looking up at least. Good Luck! __________________ Slow and low, that is the tempo.

2007-05-23, 08:07 AM	#13
ScottyS EJ205 Real Name: It is real! Join Date: Jul 2004 Location: RNO Posts: 2,367 Car: 1998 Impreza Wagon, 1991 Legacy Turbo Sedan, 2003 Nissan Xterra Class: tvFree Yes, I'll fix it for you. Again.	Man, that's got to be hard. It's bad enough for me when my little guy twists an ankle. Hope your baby and family hold up under these dark times.....they don't last forever. __________________ "Trend Number One is that people aren't getting any smarter." Dogbert

2007-05-23, 03:50 PM	#14
Libila EJ205 Real Name: Tim Join Date: Jun 2004 Location: Reno, NV Posts: 1,384 Car: '94 L	I wish the best of luck to your family.

2007-05-23, 03:58 PM	#15
Nick Koan JDM Cowboy Real Name: Nick Join Date: Oct 2003 Location: Somewhere Posts: 8,642 Car: 2015 Mazda 3	Good luck man __________________ While a standard engine is powered by a belt connected to the crankshaft, a turbo engine runs on its own exhaust steam, making it more energy efficient. -- CNN

2007-05-23, 04:16 PM	#16
100_Percent_Juice (40 percent vodka) Real Name: Joel Join Date: Oct 2006 Location: Reno, NV Posts: 4,446 Car: 2004WRX Class: Baby-Hauler/GroceryGetter	Leaving Reno... in the airplane. __________________ "A power nap is when you sleep on someone who is weaker than you." - Dimitri Martin

2007-05-23, 04:24 PM	#17
NevadaSTi EJ251 Real Name: Brian Join Date: Mar 2005 Location: Minden, Nv. Posts: 989 Car: 1994 Toyota 4Runner Some mistakes are too much fun to only make once	All the best of luck to your little baby. I hope and pray that everything goes well for him. __________________ The last living thing on earth will be me. I'll step on the last cockroach.

2007-05-23, 05:19 PM	#18
Kevin M EJ22T Join Date: Sep 2003 Location: Reno Posts: 9,445 Car: '93/'01 GF6, mostly red Class: 19 FP	Safe travels guys. Hope everything goes well in Philly. __________________ FWD is the new AWD

2007-05-24, 03:25 PM	#19
Emboyoyo EJ22 Join Date: Feb 2006 Location: Reno, NV Posts: 259 Car: 2008 Subaru Impreza 2.5i Class: Novice	Aww that sucks! That's kind of what happened to me when I was 4, except I did die, my kidneys shut down and my right lung collapsed. I had e-coli and was in the hospital for a month and in bed for three months with an IV. I had to get my blood sugar checked every hour and I threw up everything I ate. Now I have damaged kidneys and a damaged gallbladder. Best of luck to you!!