Feeling Defeated/Ethan's hospital stay/We're Home!

[naednek]

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.

[stimpy]

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.

[Bullwinkle]

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.

[PR_GMR]

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.

[CeeKay]

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)

[Harkonis]

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!

[hepcat]

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.

[naednek]

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

[Bullwinkle]

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.  

[naednek]

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

[Azhag]

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?

[shaggydoug]

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.

[Purge]

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

[jament]

It's amazing how resilient parents and kids can be. Keep fighting.  Hope things turn around soon.

[Isgrimnur]

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. 

[rickfc]

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.

[Arnir]

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

[farley2k]

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

+1

[Devil]

 

Hoping for the best.

[Nonnahob]

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

[Vidiot]

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

[tiktokman]

Best of luck to Ethan. You and yours are in my thoughts.

[naednek]

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.

[rickfc]

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

[hepcat]

Now that is one cute kid.   

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

[naednek]

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.

[Bullwinkle]

Adorable.  And happy birthday.

Best of luck, Ken.

[rickfc]

I'm not going to lie, that made me tear up. Hopefully everything is ok with the next tests.

[Purge]

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

HBD, and best of luck!

[CeeKay]

glad to hear things are going better Ken.

[farley2k]

Thanks for the great video. 

[tiktokman]

Awesome video Ken.

[hepcat]

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

[Harkonis]

awesome!

[naednek]

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.

[kratz]

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.

[Kagath]

Should have mounted some ears on that thing for him.

Good to hear that he's doing better!

[naednek]

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

[Harpua3]

Good luck! As mentioned above, that's a cute kid!

[naednek]

Thanks.

The culture test is still showing negative.  Should have the final results in the next few days (hopefully before 4th of July)