Octopus Overlords

by **naednek** » Fri Jun 15, 2012 7:10 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.

by **Scuzz** » Fri Jun 15, 2012 7:16 pm

I feel for you but remember, for the sake of wife and kid somebody needs to stay strong and optimistic. See if you can find a support group or someone to talk to about your situation, besides us internet psychos.

by **Holman** » Fri Jun 15, 2012 7:42 pm

My thoughts are with you and your family, naednek.

Your strength here is an inspiration to me in my own parenting. I'm sure I'm not the only one.

by **Blackhawk** » Fri Jun 15, 2012 7:56 pm

That's awful, I'm sorry. I wish there was something meaningful I could say, but you do have my thoughts.

by **KKBlue** » Fri Jun 15, 2012 8:57 pm

Just holding your hand... not saying anything, but listening. Please write as often as you like.

by **Anonymous Bosch** » Fri Jun 15, 2012 9:47 pm

Hang in there, naednek. As distressing as the news of your son's required hospital treatment undoubtedly was, where there's life, there's hope. At least you live in a nation where the treatment he needs is readily available. Your son's indomitability has been enough to keep pushing that big grey stormy looking cloud away, so look to him for your inspiration.

by **stessier** » Fri Jun 15, 2012 10:08 pm

Holman wrote:My thoughts are with you and your family, naednek.

As our mine.

Your strength here is an inspiration to me in my own parenting. I'm sure I'm not the only one.

You're not. I don't know how Ken does it. Keep fighting and do talk to others to remind yourself that you're not alone in this.

by **naednek** » Sat Jun 16, 2012 1:07 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

by **Zaxxon** » Sat Jun 16, 2012 8:58 am

Blackhawk wrote:That's awful, I'm sorry. I wish there was something meaningful I could say, but you do have my thoughts.

This.

by **Daehawk** » Sat Jun 16, 2012 2:11 pm

Im not much for praying but Ill pray for the little tyke. Can't hurt.

As for a second child there is always adoption. There are wonderful babies just waiting for a mother and father. My wonderful wife was one of them

by **naednek** » Sat Jun 16, 2012 3:10 pm

2nd child is in the oven

We've talked about it.

by **Daehawk** » Sat Jun 16, 2012 3:48 pm

Oh I see. Well if I recall my medical shows isn't it a lower chance than it not having anything?

by **McBa1n** » Sat Jun 16, 2012 6:43 pm

Horrible to hear, man. I ain't much for prayin, but your little guy is in my thoughts. I'll sacrifice a chicken or something in my back yard to show support.
Hopefully there are better days ahead. It just ain't right.

by **MHS** » Sat Jun 16, 2012 8:03 pm

There's nobody in your situation who wouldn't have these kinds of thoughts, I don't think. It has to just get overwhelming and paralyzing sometimes. I can't even imagine. I wish there were any words that would help, but know that you're in our thoughts, and you should be very proud of what you and Ethan and your wife have accomplished in the face of this adversity.

by **rshetts2** » Sat Jun 16, 2012 8:04 pm

There's not a lot I can add that hadn't been said already. I hope and pray for the best for your family. I can say one thing, as tough as it can be, one of the beat medicines out there is a positive mental attitude. My sister fought cancer for over a decade. She eventually went into total remission and is now cancer free. She was always upbeat about it, especially considering the same cancer took our mother. She is convinced, as am I, that her positive mindset had as much to do with her beating it as any treatment. Keep the faith and believe good things can happen.

by **Eightball** » Sun Jun 17, 2012 11:54 am

naednek wrote: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

I hear you, but you have to be strong for Ethan. Vent away on this forum...but the hardest thing is you and your wife have to have that positive view and mindset for your child so he doesn't think he did anything wrong.

And yes, it's completely unfair. Feel free to feel that way.

by **Chaosraven** » Sun Jun 17, 2012 12:12 pm

Eightball wrote:And yes, it's completely unfair. Feel free to feel that way.

+1

Having an adult child with hydrocephalus (and 50+ Hospital Surgeries) we have felt the same.

by **naednek** » Sun Jun 17, 2012 6:15 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

by **Lassr** » Sun Jun 17, 2012 6:19 pm

Hate to heat that.

Hang in there!

by **naednek** » Tue Jun 19, 2012 10:31 pm

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.

by **Arcanis** » Tue Jun 19, 2012 10:49 pm

Ken I honestly can relate. I know how hard it is when your child's medical conditions keep beating down on you no matter what your family does. You just need to have faith in your son and he will reward you by beating this. Whenever you are feeling down ask yourself "is there anything different that I can do that will make this better?" if you answer honestly the answer will almost invariably be no.

My words may not come across as well spoken as I would like. They certainly can't convey every bit of strength and advice I want to send to you, but they are what we have. Just know we as a community are here for you and that those of us with children that have/had medical issues are with you and we are here to support you.

by **Kurth** » Wed Jun 20, 2012 12:17 am

Best wishes to you and your family. You can get through it!

by **Zarathud** » Wed Jun 20, 2012 12:29 am

My heart aches. It's absolutely unfair and awful, and I hope your son's treatment progresses well. You and your family are in our prayers.

by **ImLawBoy** » Wed Jun 20, 2012 12:38 am

naednek wrote:Hospital time is much slower than outside time. Everything moves slow, and the opposite of your schedule.

Ain't that the truth! I know they have a lot of patients to deal with, but one of the few things we can control about our kids are the schedules, and it drives me nuts when they don't bring meds or food on schedule and we have to track down a nurse. So annoying.

I know that we're not dealing with the same issues, but as a fellow parent who has spent more time in children's hospitals in the last two years than anyone should have to in a lifetime, I feel your pain. It sucks and it's not fair, and you wouldn't be human if you didn't feel defeated on occasion. We do it for the kids, though.

Good luck, and I hope you are all back home soon.

by **Bad Demographic** » Wed Jun 20, 2012 6:03 pm

Blackhawk wrote:That's awful, I'm sorry. I wish there was something meaningful I could say, but you do have my thoughts.

Same here.

I don't even know what to say Ken. I wish I could say or do something comforting.

by **naednek** » Thu Jun 28, 2012 12:37 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.

by **Remus West** » Thu Jun 28, 2012 12:42 am

video link isn't working for me but I wanted to thank you for the update. It brought some happy tears to my eyes to think of your little boy enchanting everyone he meets.

by **naednek** » Thu Jun 28, 2012 1:11 am

Remus West wrote:video link isn't working for me but I wanted to thank you for the update. It brought some happy tears to my eyes to think of your little boy enchanting everyone he meets.

fixed

by **Remus West** » Thu Jun 28, 2012 2:03 am

naednek wrote:
Remus West wrote:video link isn't working for me but I wanted to thank you for the update. It brought some happy tears to my eyes to think of your little boy enchanting everyone he meets.

fixed

and now the whole thing is adorable.

by **Austin** » Thu Jun 28, 2012 2:48 am

Wish I could get the video to load, but encouraged by your encouraging post. Thanks.

Edit: Probably nothing wrong with your video, it's my connection.

by **Daehawk** » Thu Jun 28, 2012 3:14 am

Thats a happy little leprechaun ya got there. glad he is feeling better.

by **Austin** » Thu Jun 28, 2012 3:30 am

Got it working, awesome!

by **Freezer-TPF-** » Thu Jun 28, 2012 7:00 am

Ethan is quite a trooper, and he obviously has great parents. Hang in there.

by **Holman** » Thu Jun 28, 2012 7:28 am

I missed the video, but I'm happy to read about it!

Good thoughts to all of you.

by **AWS260** » Thu Jun 28, 2012 7:28 am

That's beautiful.

by **A nonny mouse** » Thu Jun 28, 2012 8:08 am

Ken, that video just made my morning. Thanks for posting it. I started to get choked up because I know how happy it makes me when my son (14 months) runs around like that, and he is in good health. I can imagine that you were ecstatic! Ethan is absolutely adorable and I am happy to see him smiling and running around.

Like many here, I can't imagine what you are going through, but you are in my thoughts. I agree with Freezer, you two are doing a great job. Stay strong.

nonny

by **Zaxxon** » Thu Jun 28, 2012 9:15 am

Awesome.

by **Jag** » Thu Jun 28, 2012 9:54 am

Beautiful kid. I love seeing the joy in his face. Stay strong, god knows it's one of the hardest parts about being a parent. My 11 yo was rushed to the ER at camp in New Hampshire yesterday. He's ok now, but it's that same feeling of helplessness that just never goes away no matter what age they are.

by **LawBeefaroni** » Thu Jun 28, 2012 10:27 am

naednek wrote: 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)

Made my day! Absolutely beautiful.

(I know it's probably at the absolute bottom of your list of things to do, but if you have some time to kill there's an online video editor in Youtube with a rotate function.)

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

Seems like an amazingly strong and upbeat kid.

by **naednek** » Thu Jun 28, 2012 10:37 am

LawBeefaroni wrote:
naednek wrote: 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)

Made my day! Absolutely beautiful.

(I know it's probably at the absolute bottom of your list of things to do, but if you have some time to kill there's an online video editor in Youtube with a rotate function.)

Awesome, I was looking for that option, finally found it. It's correcting it now

Octopus Overlords

Who is online