http://gamingtrend.com
November 26, 2014, 09:51:06 PM *
Welcome, Guest. Please login or register.

Login with username, password and session length
News:
 
   Home   Help Search Calendar Login Register  
Pages: [1] 2   Go Down
  Print  
Author Topic: Feeling Defeated/Ethan's hospital stay/We're Home!  (Read 2344 times)
0 Members and 1 Guest are viewing this topic.
naednek
Global Moderator
Gaming Trend Senior Member

Online Online

Posts: 4708



View Profile
« on: June 15, 2012, 11:11:07 PM »

So, as you know, my two year old son Ethan has Cystic Fibrosis.  The last few months we have been treating him with antibiotics, as well as nebulizers to fight off what could be a life threatening bacteria called psuedanomas.  Two months into the treatment we had him tested to see if it was still there or if it has decreases its presence in his lungs.  The results came back as rare which was a good sign.  We were then told that he will be tested again a week after his medication ended. If the test results showed that it was still there, he would then be admitted to the hospital for 7-10 days and be put on iv antibiotics.   If it came back negative, he would have a procedure done where they stick a cable down your throat and take a deeper sample.  If that was negative then we beat it.  If not, then he would be admitted.

Well we got the call stating that the preliminary results showed that he still has it and that we should be prepared for hospitalization.

We knew it was a possibility, but it was still a shock.  We spent all this time and effort and it showed that we were making great progress and it didn't matter.

I'm tired of pushing that big grey stormy looking cloud away from us knowing it wants to take him away from us.

I  second guess myself about choosing to have another child who could end up having the same rotten disease. I'm envious of other families who get to enjoy a normal life.
« Last Edit: July 05, 2012, 03:54:51 AM by naednek » Logged
stimpy
Gaming Trend Senior Member

Offline Offline

Posts: 814


I'm makin a move!!


View Profile
« Reply #1 on: June 15, 2012, 11:49:57 PM »

Quote from: naednek on June 15, 2012, 11:11:07 PM

I'm envious of other families who get to enjoy a normal life.

No such thing. Every family has it's own issues to deal with.
The trick is to try and surround yourself with family and friends who support you thru whatever issues you may face.
Logged
Bullwinkle
Gaming Trend Staff
Gaming Trend Senior Member

Offline Offline

Posts: 15694


Watch me pull a rabbit outta my hat.


View Profile
« Reply #2 on: June 15, 2012, 11:50:00 PM »

Don't stop pushing, Ken.  Win or lose, you'll feel the effects of not having fought that cloud.  Not that it's easy, of course, but you've got to do it.

Best of luck to you.  My thoughts are with you.
Logged

That's like blaming owls because I suck at making analogies.
PR_GMR
Gaming Trend Senior Member

Offline Offline

Posts: 3430



View Profile
« Reply #3 on: June 16, 2012, 12:14:05 AM »

Don't know what to quite say except to hang in there. The universe, or god, or whatever you call it, doesn't give us more than what we can handle. Concentrate in fighting for your son and making the best of his youth.
« Last Edit: June 16, 2012, 12:44:45 AM by PR_GMR » Logged
CeeKay
Gaming Trend Staff
Gaming Trend Senior Member

Offline Offline

Posts: 71766


La-bibbida-bibba-dum! La-bibbida-bibba-do!


View Profile
« Reply #4 on: June 16, 2012, 12:15:22 AM »

Some things in life are bad
They can really make you mad
Other things just make you swear and curse.
When you're chewing on life's gristle
Don't grumble, give a whistle
And this'll help things turn out for the best...
fan made music videos of 80's power ballads!



(hopefully that at least brought a smile to your face)
Logged

Because I can,
also because I don't care what you want.
XBL: OriginalCeeKay
Wii U: CeeKay
Harkonis
Gaming Trend Senior Member

Offline Offline

Posts: 9844



View Profile
« Reply #5 on: June 16, 2012, 12:38:48 AM »

while I'm not nearly as good at giving support as I am at playing video games, I'll do whatever I can to help you through this Ken.  Keep your chin up!
Logged
hepcat
Gaming Trend Senior Member

Offline Offline

Posts: 9297


I'M the one that knocks! Now...burp me!


View Profile
« Reply #6 on: June 16, 2012, 02:38:10 AM »

Ken, are there any support groups you can join or talk with in your area?  I would guess the hospital would have the info if there is one.  Just being able to reach out and talk with other parents who are dealing with this might help.  Plus, when your kid gets his walking papers from the hospital, you can introduce him to some new friends.

My thoughts are with you and your family.
Logged

Warning:  You will see my penis. -Brian

Just remember: once a user figures out gluten noting them they're allowed to make fun of you. - Ceekay speaking in tongues.
naednek
Global Moderator
Gaming Trend Senior Member

Online Online

Posts: 4708



View Profile
« Reply #7 on: June 16, 2012, 05:13:04 AM »

Thanks for the encouragement.

I don't mean to have a pity party, it's just scary and frustrating, and unfair and at the moment thats how I felt. 

We'll just have to take one day at a time and hope for the best
Logged
Bullwinkle
Gaming Trend Staff
Gaming Trend Senior Member

Offline Offline

Posts: 15694


Watch me pull a rabbit outta my hat.


View Profile
« Reply #8 on: June 16, 2012, 01:55:55 PM »

Quote from: naednek on June 16, 2012, 05:13:04 AM

Thanks for the encouragement.

I don't mean to have a pity party, it's just scary and frustrating, and unfair and at the moment thats how I felt.  

We'll just have to take one day at a time and hope for the best

Vent as much as you need.  
Logged

That's like blaming owls because I suck at making analogies.
naednek
Global Moderator
Gaming Trend Senior Member

Online Online

Posts: 4708



View Profile
« Reply #9 on: June 17, 2012, 10:18:19 PM »

Well the final results came in, and he still has it, and it seems it has grown since the last test.

Looks like we'll be admitted tomorrow
Logged
Azhag
Gaming Trend Senior Member

Offline Offline

Posts: 1841


View Profile
« Reply #10 on: June 17, 2012, 11:26:40 PM »

Sorry man, let us know of GT can do anything... easier with an older child as we could all send gaming stuff... What's the diagnosis once he's on the IV?
Logged
shaggydoug
Gaming Trend Reader

Offline Offline

Posts: 411



View Profile WWW
« Reply #11 on: June 18, 2012, 03:08:38 PM »

Ken,

CF is a tough struggle. Relish the good times. I found that hospital times were a time to check out from the world and spend time together. Try to make the best of it. I'll be praying for you.
Logged

Purge
Gaming Trend Staff
Gaming Trend Senior Member

Offline Offline

Posts: 18616



View Profile WWW
« Reply #12 on: June 18, 2012, 03:47:52 PM »

frown

You, and your family, are in my thoughts. Best of luck.
Logged

"If it weren't for Philo T. Farnsworth, inventor of television, we'd still be eating frozen radio dinners." - Johnny Carson
jament
Gaming Trend Reader

Offline Offline

Posts: 378



View Profile
« Reply #13 on: June 18, 2012, 05:28:50 PM »

It's amazing how resilient parents and kids can be. Keep fighting.  Hope things turn around soon.
Logged
Isgrimnur
Gaming Trend Senior Member

Online Online

Posts: 8917



View Profile
« Reply #14 on: June 18, 2012, 05:35:32 PM »

Good luck, Ken.  At least we have a medical community that can take the fight to the bug rather than waiting for it to get worse. 
Logged

Hadron Smasher on 360; IsgrimnurTTU on PS3
rickfc
Gaming Trend Senior Member

Offline Offline

Posts: 5651


Why so serious?


View Profile
« Reply #15 on: June 18, 2012, 06:17:53 PM »

Good luck, Ken. While being a parent is the most rewarding thing you will ever do, it is also the hardest. Some of us just have it harder than others. I wish there was something more profound or encouraging that I could say, but there are no words that can help ease the burden with which you have been given.

Just remember that you are your son's superhero, and he draws his strength from you. He will do as you do, and he will respond as you respond. You have to be his rock and his guide.

That's all I have. I sincerely hope for nothing but the best for you and your family. May your son make a full recovery and lead a full and happy life.
Logged
Arnir
Gaming Trend Senior Member

Offline Offline

Posts: 973


View Profile
« Reply #16 on: June 19, 2012, 12:09:42 AM »

Good luck.  I know words can't really fix things but we are all here for you.
Logged

If the road home crosses any landscape features that include words like "forgotten," "void," "razorthorn," "shadowmist," or "doom," then I vote that we take a nap first.
farley2k
Moderator
Gaming Trend Senior Member

Online Online

Posts: 3330



View Profile
« Reply #17 on: June 19, 2012, 12:19:00 AM »

Quote from: Arnir on June 19, 2012, 12:09:42 AM

Good luck.  I know words can't really fix things but we are all here for you.

+1
Logged

Devil
Gaming Trend Senior Member

Offline Offline

Posts: 7742



View Profile
« Reply #18 on: June 19, 2012, 02:02:04 AM »

 icon_frown

Hoping for the best.
Logged

XBox Gamertag: Devil13Devil
Wii Number: 0305 6568 6417 2609
PS3 Thing: Slived
Nonnahob
Gaming Trend Senior Member

Offline Offline

Posts: 949



View Profile
« Reply #19 on: June 19, 2012, 04:02:08 AM »

I will echo Ricks thoughts... Words don't do enough, my thoughts and prayers will be with your family.
Logged

X360 - Nonnahob

A few nights ago I played a while with Hardon and we had a good time. - PhillyPeteRock
Vidiot
Gaming Trend Senior Member

Offline Offline

Posts: 543


View Profile
« Reply #20 on: June 19, 2012, 04:23:21 AM »

I can't begin to imagine how hard this must be.  My thoughts are with your and your family Ken.
Logged
tiktokman
Gaming Trend Reader

Offline Offline

Posts: 398


View Profile
« Reply #21 on: June 19, 2012, 03:05:28 PM »

Best of luck to Ethan. You and yours are in my thoughts.
Logged
naednek
Global Moderator
Gaming Trend Senior Member

Online Online

Posts: 4708



View Profile
« Reply #22 on: June 20, 2012, 02:31:31 AM »

Man one can never get used to hospital stays.

I took the first night shift and was worried that Ethan would have a hard time falling asleep. At home we have a routine, started it from day one, and he is very accustomed to it. He does well during vacations, and at grandma and grammy's house. But this is his first time in the hospital as a toddler with loads of energy.

This bacteria that he is fighting is all internal, he isn't having any side effects like feeling tired, coughing or having problems breathing. He looks and acts like a normal 2.5 year old boy. So imagine being him not knowing why he's going in. Imagine being us trying to reign in that energy. Not an easy task, especially when you can only move about 3 feet because of the IV tube stuck in your arm.

Well, while he went down to bed later than he normally does, he slept through the night. Hospital time is much slower than outside time. Everything moves slow, and the opposite of your schedule. We were told he would have his respitory done between 7pm and 8pm. They didn't show up till 8:40, and she forgot one of the tubes for his chest treatment. So she had to go back downstairs to get that. She was gone for what felt like 10 minutes, and Ethan is just waiting patiently in the crib.

We were finally done and put Ethan down to bed around 9:15ish. Ethan likes to talk/sing himself to sleep. It usually lasts 20 to 30 minutes before he conks out. Around 9:45 an Assistant Nurse came ignoring the instructions given by the doctor to leave us alone between 8pm and 6am. He came in wanting to ask me questions on how I felt the nurses are doing. I'm thinking, really, you can't ask us that tomorrow during the day? So that basically resets Ethan sleep habit, and finally he knocks out at 10:15pm, and then 6:00 am, the they come in change out his IVs.

Today, he had his PICC line inserted. We were told it would take 1 hour. It actually took 3 hours. That gave us some free time, but it screwed up his mood when he woke up. The PICC line goes into his arm, around his shoulder and ends near his heart. It's better than IV's for long term stays and has less chance of infections. It also gives Ethan more flexibility in arm movements.

I'm exhausted and it's only been 1 day.

Thanks for the all the prayers and offering of meals. It's hard to plan things in advance not know what our schedule is going to be.

Logged
rickfc
Gaming Trend Senior Member

Offline Offline

Posts: 5651


Why so serious?


View Profile
« Reply #23 on: June 20, 2012, 06:33:58 PM »

Again, my thoughts are with you and your family, Ken. I can't fathom putting my daughter through something like that. Best of luck.
Logged
hepcat
Gaming Trend Senior Member

Offline Offline

Posts: 9297


I'M the one that knocks! Now...burp me!


View Profile
« Reply #24 on: June 20, 2012, 06:50:33 PM »

Now that is one cute kid.   icon_biggrin

Keep him feelin' loved, ken.  That's the best treatment he can get.

Logged

Warning:  You will see my penis. -Brian

Just remember: once a user figures out gluten noting them they're allowed to make fun of you. - Ceekay speaking in tongues.
naednek
Global Moderator
Gaming Trend Senior Member

Online Online

Posts: 4708



View Profile
« Reply #25 on: June 28, 2012, 04:39:32 AM »

http://youtu.be/f0xA53dXE60

Want see what happens when you stick a 2 year old in a hospital for a week, tied down with IV cables and then later released to run around outside for an hour cable free?

Pure Joy!

(The camera wasnt being held in the correct position, sorry for the bad angle)

_______________

So we've been here for over a week, and to be honest Ethan is handling it great. For the most part, he's in great spirits. He's everyone's favorite patient. He sings alot during his treatments and the nurses/respitory nurses all come in to listen. People are always talking about it him in the hallways, even the food service people/janitors.

Tomorrow he gets his throat culture done and will find out if the pseudanomas is gone, if not, we're here another week so 21 days total. So obviously we're hoping for negative results. Unfortunately no matter what happens we will be going home with more nebulizers, and it's possible that he could go home with pseudanomas making this hospital stay all for nothing.

We have family helping out taking night shifts. It usually means I'm staying the night at least 3 nights a week and I'm here all weekend. It takes getting used to, but what is great is we all spend more time together.

All last week they promised that we could go outside unattached for 1 hour a day. It never happened until this last Monday. It's like taking your kid to disneyland. He runs all over the place, saying hi to everyone he sees.

We can't wait to leave, but we're happy that things are going well with his attitude and behavior.

Thanks for your thoughts and prayers, it's been a crazy week and we're hoping this is the last week.
« Last Edit: June 28, 2012, 05:11:37 AM by naednek » Logged
Bullwinkle
Gaming Trend Staff
Gaming Trend Senior Member

Offline Offline

Posts: 15694


Watch me pull a rabbit outta my hat.


View Profile
« Reply #26 on: June 28, 2012, 12:50:19 PM »

Adorable.  And happy birthday.

Best of luck, Ken.
Logged

That's like blaming owls because I suck at making analogies.
rickfc
Gaming Trend Senior Member

Offline Offline

Posts: 5651


Why so serious?


View Profile
« Reply #27 on: June 28, 2012, 01:38:18 PM »

I'm not going to lie, that made me tear up. Hopefully everything is ok with the next tests.
Logged
Purge
Gaming Trend Staff
Gaming Trend Senior Member

Offline Offline

Posts: 18616



View Profile WWW
« Reply #28 on: June 28, 2012, 02:46:56 PM »

Love the exuberance. Makes me want to have another kid, honestly.

HBD, and best of luck!

smile
Logged

"If it weren't for Philo T. Farnsworth, inventor of television, we'd still be eating frozen radio dinners." - Johnny Carson
CeeKay
Gaming Trend Staff
Gaming Trend Senior Member

Offline Offline

Posts: 71766


La-bibbida-bibba-dum! La-bibbida-bibba-do!


View Profile
« Reply #29 on: June 28, 2012, 02:50:08 PM »

glad to hear things are going better Ken.
Logged

Because I can,
also because I don't care what you want.
XBL: OriginalCeeKay
Wii U: CeeKay
farley2k
Moderator
Gaming Trend Senior Member

Online Online

Posts: 3330



View Profile
« Reply #30 on: June 28, 2012, 03:15:57 PM »

Thanks for the great video. 

Logged

tiktokman
Gaming Trend Reader

Offline Offline

Posts: 398


View Profile
« Reply #31 on: June 28, 2012, 09:38:53 PM »

Awesome video Ken.
Logged
hepcat
Gaming Trend Senior Member

Offline Offline

Posts: 9297


I'M the one that knocks! Now...burp me!


View Profile
« Reply #32 on: June 29, 2012, 03:33:14 PM »

That really makes the day so much better.  Thanks Ken!
Logged

Warning:  You will see my penis. -Brian

Just remember: once a user figures out gluten noting them they're allowed to make fun of you. - Ceekay speaking in tongues.
Harkonis
Gaming Trend Senior Member

Offline Offline

Posts: 9844



View Profile
« Reply #33 on: June 29, 2012, 03:39:58 PM »

awesome!
Logged
naednek
Global Moderator
Gaming Trend Senior Member

Online Online

Posts: 4708



View Profile
« Reply #34 on: June 30, 2012, 08:53:36 PM »

Just got word from the doctor that the preliminary report on Ethan's culture is negative! Now we wait for the final report which should be Monday or Tuesday.
Logged
kratz
Gaming Trend Senior Member

Offline Offline

Posts: 4208



View Profile
« Reply #35 on: June 30, 2012, 10:19:43 PM »

smile

Great video.  That cracked me up.  Kids and dogs always amaze me with how well they handle stuff and how it doesn't get them down like it seems to with the rest of us.  Good stuff.

Good to hear that it looks like things are clearing out.
Logged
Kagath
Gaming Trend Senior Member

Offline Offline

Posts: 2487


View Profile
« Reply #36 on: July 01, 2012, 12:40:37 AM »

Quote from: naednek on June 20, 2012, 02:31:31 AM


Should have mounted some ears on that thing for him.

Good to hear that he's doing better!
Logged

Playing: ? 360 | ? | BF4 PC / XB1 | ? - WINGS *are* shit lately.
PSN/Live: MrStark77
naednek
Global Moderator
Gaming Trend Senior Member

Online Online

Posts: 4708



View Profile
« Reply #37 on: July 01, 2012, 02:47:59 AM »

Quote from: kratz on June 30, 2012, 10:19:43 PM

smile

Great video.  That cracked me up.  Kids and dogs always amaze me with how well they handle stuff and how it doesn't get them down like it seems to with the rest of us.  Good stuff.

Good to hear that it looks like things are clearing out.

Ya we were dreading a hospital stay at this age.  We knew it was always a possibility/reality but didn't know how we could keep him happy for such a long time.  Monday will be his 14th day in the hospital, if all goes well we could be out on Tuesday just before 4th of July.  Talk about Freedom smile
Logged
Harpua3
Gaming Trend Senior Member

Offline Offline

Posts: 2752


View Profile
« Reply #38 on: July 02, 2012, 12:27:30 AM »

Good luck! As mentioned above, that's a cute kid!
Logged
naednek
Global Moderator
Gaming Trend Senior Member

Online Online

Posts: 4708



View Profile
« Reply #39 on: July 02, 2012, 02:49:38 AM »

Thanks.

The culture test is still showing negative.  Should have the final results in the next few days (hopefully before 4th of July)
Logged
Pages: [1] 2   Go Up
  Print  
 
Jump to:  

Powered by MySQL Powered by PHP Powered by SMF 1.1.19 | SMF © 2013, Simple Machines
Valid XHTML 1.0! Valid CSS!
Page created in 0.142 seconds with 103 queries. (Pretty URLs adds 0.034s, 2q)