Octopus Overlords

It's been two years almost to the day. Ethan has been admitted to the hospital. He's been struggling with a cold and his lung function dropped almost 50% since Dec 5th.

Most people with CF are admitted for a tune up once a year. He made it two years without being admitted. Last time it was 5 years.

So the hospital is our home for the next 10 to 14 days.

It took about 2 hours, 6 nurses and aboutv8 pokes to get his iv in. Next is the PICC line and then he can finally eat.

I'll keep this updated.

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Excellent track record. Best wishes and keep yourself sane.

Good luck man, I'm sure he (and you) will do great.

Ethan does look pretty bad-ass in that picture, like he's saying "bring it on, world".

Good wishes!

I can't imagine the energy a kid will have after getting "used" to living at 50% lung function and then getting that increased closer to normal. He'll be bouncing off walls!

Good luck to you and Ethan and the rest of the family.

Ethan is so old! And so big!

Here's hoping he's up and running soon.

Man, do I hate the f'in hospital. Best wishes to Ethan on a speedy recovery!

naednek wrote: ↑Thu Jan 03, 2019 4:22 pm
It took about 2 hours, 6 nurses and aboutv8 pokes to get his iv in. Next is the PICC line and then he can finally eat.

I had one really minor surgery when it literally took them 1/2 hour and two nurses to do the IV in the hand thing. I give blood often, I am somewhere around 4 gallons, and I have never had problems like that. I feel sorry for your son.


I hope that is his worst experience while in the hospital.

He's so much older than I thought. But time flies bye when you're having fun. I hope it's an enjoyable time for him and his new adventure. Can he play any video games there?

naednek wrote: ↑Thu Jan 03, 2019 4:22 pm It took about 2 hours, 6 nurses and aboutv8 pokes to get his iv in. Next is the PICC line and then he can finally eat.

Our daughter has lupus and blood clotting issues (related to the lupus) in addition to the PKD she inherited from me so she gets a lot of blood work done. She is a terrible stick. I've seen them take hours and go through multiple phlebotomists and in the end they've frequently had to go though the space between her fingers or toes before just to draw blood or get an IV in. So here are a few tips (given Ethan's health issues, you probably know these, but just in case they help you or anyone else):

1. Always tell them right away if they're a tough stick. Ask for their most experienced phlebotomist right away. Kayla hates doing this because she thinks they'll resent her for it, but I've spent too many agonizing hours watching them move up the food chain to care.
2. Ask them to use warmers first.
3. Kayla's 25 but we still ask them to use the smallest child needles. Her veins are tiny, and they roll. You'd think with someone Ethan's age they would automatically use child needles but verify because sometimes they're lazy.
4. Always make sure they're as hydrated as possible before a stick; dehydration makes veins rubbery.
5. Meditation or distraction. Being tense makes for a harder stick, so do whatever it takes to have them relax their muscles.

Good luck with it all.

When my kids were sick (and very young), we learned to ask them to get a flight nurse down to stick them. They are expert at sticking people in the worst conditions including.

I always have them insert their needle in my hand. Too hard to get them in my arm.

MHS wrote:

naednek wrote: ↑Thu Jan 03, 2019 4:22 pm It took about 2 hours, 6 nurses and aboutv8 pokes to get his iv in. Next is the PICC line and then he can finally eat.

Our daughter has lupus and blood clotting issues (related to the lupus) in addition to the PKD she inherited from me so she gets a lot of blood work done. She is a terrible stick. I've seen them take hours and go through multiple phlebotomists and in the end they've frequently had to go though the space between her fingers or toes before just to draw blood or get an IV in. So here are a few tips (given Ethan's health issues, you probably know these, but just in case they help you or anyone else):

1. Always tell them right away if they're a tough stick. Ask for their most experienced phlebotomist right away. Kayla hates doing this because she thinks they'll resent her for it, but I've spent too many agonizing hours watching them move up the food chain to care.
2. Ask them to use warmers first.
3. Kayla's 25 but we still ask them to use the smallest child needles. Her veins are tiny, and they roll. You'd think with someone Ethan's age they would automatically use child needles but verify because sometimes they're lazy.
4. Always make sure they're as hydrated as possible before a stick; dehydration makes veins rubbery.
5. Meditation or distraction. Being tense makes for a harder stick, so do whatever it takes to have them relax their muscles.

Good luck with it all.

Agreed on all this advice. Flight nurse advice is good if the hospital has that service available.

I have always been a good stick and usually can draw blood or start an IV when others cannot. My personal rule is if I'm not successful after 2 sticks, I won't stick again.

My other advice

-After 2 nurses have failed, demand they have an expert stick. My nurses know I'll be very upset if I find they are sticking someone multiple times without calling for an ultrasound or expert.

-A majority of hospitals now have an ultrasound for IV starts and nurses trained to use them. Ask for the ultrasound.

-Ask for an oncology nurse. They routinely have difficult sticks and are better than your average nurse at IV starts.

-Don't let them fish around. They either hit the vein or they don't. I hate seeing someone keep a needle in someone and fish around.

-Lastly, if a nurse appears defensive for asking them to get advance help, speak to their director. Ask their director if they'd like to be stuck with a needle multiple times instead of getting expert help.

And to stay on topic, kids are resilient. Ethan is tougher than me, I'm sure of it.

When my son gets an IV, they go the ultrasound route right away. He's a notoriously tough stick, so it must be in his chart to just start with that.

Thats not fair. Im so sorry man. Im not in my right state right now so Im worried about posting many replies. Know that Im here and will keep checking for updates. Wishing you the best and him a speedy easy fix up. I know my wife is looking out for him.

He's a tough kid that's for sure. I hope it's a short visit and he is back out and playing again soon.

Hope things are getting better. Best wishes to Ethan. So great to see him so big!

I hope your little "garbage" man gets out of hospital soon.

Give him a group hug from all of us! Then get him toys...copious amounts of toys. I want you to spoil that kid!

Feel better Ethan!

hepcat wrote: ↑Fri Jan 04, 2019 10:00 am Give him a group hug from all of us! Then get him toys...copious amounts of toys. I want you to spoil that kid!

He's got enough toys from Xmas

PICC line was installed 2 hours after the IV, he's in a good state of mine. Not liking the crappy hospital wifi. I brought the PS4 over, and most of the games I loaded from the PSN + are relient on the internet since it's tied to my online account. So when the wi-fi becomes spotty, his games get locked. Looking at hotspots options. Not looking to game\stream, but to just tell Sony, it's me, let me play my games.

Tonight is my shift, he's tired, he went to bed at 12:30 and woke up at 7am. The area around his picc line was sore. They finally gave him some pain meds and was out in 10 minutes.

Hoping he stays happy tonight. Nothing worse than being a kid stuck to a bed.

Best wishes for a speedy recovery.

Give him a hug for me, naed (because a proxy hug from a total stranger is so meaningful - uh huh). Hoping for the best!

Im sorry I dont stop by enough. Im just not right at all right now.

I hope the little guy is doing amazing and will be completely out of the hospital soon. Ill pray for him and wish him good thoughts both.

Was in the middle of posting an update on Monday but then got a call from my brother who was at the hospital with Ethan. Over the weekend, Ethan complained of pain in his right shoulder, where is PICC line is (well the PICC line is between the fold of his upper and lower arm. We thought he just slept on it wrong, or was still sore from the insertion. The nurses checked the line, and for swelling and nothing stood out in regards to the PICC line.

Monday I go back to work and around lunch time I get a call and I can hear Ethan screaming in the background and that he wanted me there. So off, I go. They had him do a Ultrasound, EKG, and Xray and later that day they found he had a blood clot in his shoulder. Monday when he was in pain, they could see his shoulder swollen (wasn't that way in the weekend).

So now, Ethan has to have blood thinner injections in his stomach twice a day for 6 weeks. And we have to administer it! Joy!

Ethan was brave on the first time. We showed him the needle and told him it was smaller than the flu shot, so this should be a breeze. He took it without crying, but after discussing how brave he was he started balling. He was anxious and it showed the next morning. Luckily we had an awesome nurse who brought this device called buzzy bee. It's a bee that vibrates, and under that you place an ice pack over the injection area. The cold and vibration relaxes the nerves and makes it harder to feel the poke. $45 later we will have our own on Thursday. This seemed to help him, and he had no problems with last night's dose.

The Pulmonologist and the Respiratory Nurse thinks he sounding much better, with some minor crackling in his lower lung but definely not as much as when he was admitted. The RT had him do his PFT's yesterday ( a device that measures your lung capacity and function) and his numbers were way better than what it was last week. The Pulmonologist came in and checked him and reviewed the results, and suggested that we should be admitted on Wednesday (today) but deferred to the Dr, because of the PICC line and blood clot. You don't want to pull the PICC Line out too soon when dealing with clots as it could complicate things. So Thursday is the day we are being discharged! A week's stay. This is our shortest long term stay in 9 years. Two years ago it was 8 days. We're hoping this trend continues

Everyone has been great, Dr's, nurses, RT's, family, friends. Our friends and family came through with bringing food, games\activities for Ethan. Even his teacher came over yesterday and spent an hour with him. Also a brief lesson on fractions He loves math, and the fact that he's learning fractions in 3rd grade is baffling to me. I don't think we started that in jr high when I was a kid.

Here is Ethan doing his PFT's yesterday.

https://www.facebook.com/KenDean/videos ... 978021648/

We used to have to do intra muscular injections for our oldest multiple times a day. You'll hopefully be surprised with how quickly it becomes routine for both you and Ethan.

Dang this year. Sorry to hear about the clot. Im glad he is doing better with everything else and he gets to leave. That video is sweet. Best of luck to him and you all.

I'm sorry to hear about the complications, and hope he gets home Thursday to resume normal operations...

just spoke with my wife who is there now, and it seems like he needs a higher dose of the blood thinner. He then has to be retested to make sure it's doing the job. It might push our discharge to Friday. The problem is all of this is being discussed in front of Ethan and he's expecting to be out on Thursday. Hoping they can get the test done quickly today and we can get more info.

So sorry to hear Ethan is in the hospital Ken. My wife and I have been rooting for him since you started posting about it, and we send our love.

I understand they can't predict the future, but the doctors pulled the same thing on me when I was in... told me I was probably going home the 3rd before holding me another day to test one more medication, and it's simply soul crushing when they do that.

We are out of the hospital! Ethan had an ultra sound again to see if the clot was there. Sadly it is, we were hoping it was gone (was possible) so that we could skip the injections for 6 weeks. No go. Oh well, he is much better now taking them so it shouldn't be an issue.

He got to ride a jeep to the Ultrasound room, which he loved. You can see here...
https://www.facebook.com/KenDean/videos ... 57940/?t=0

And us finally leaving.

Thanks for your support, concern, and advice. Means alot!

Im glad he is out. Best wishes guys.

I love his t-shirt!

AWS260 wrote: ↑Fri Jan 11, 2019 10:42 am I love his t-shirt!

Didn't realize the shirt was cut off.

This is what the whole shirt says.

And now he's all cleaned up



Ok I'll stop making this my facebook post

Please don't - we could use some more happy news! Glad he's doing better!

Never feel you should stop posting. It does help I know. I post waaaay too much but it seems people still care and read them. I do appreciate it so I know you would too. You have a right to be scared yet proud of your son. He seems to be a strong happy guy. I wish the best for him and all of you too.

And, we're back. Ethan was admitted yesterday. He's been dealing with a cough the last two weeks, and his lung function has gone down 30% since Clinic on June 5th. After taking oral antibiotics, and not improving, we decided it was time to go back in. What sucks is that we had vacation planned next week, and we found out today that this will be a 10 day stay. Because it's a time share and their policy is stupid, we lost $850.

Poor kid has had a bad summer break. As soon as he got out of school, he got sick, got better shortly after, and got sick again. He's had like 4 days of normalcy. He's missed camping with the cub scouts, vacation bible school, a birthday party, and now vacation.

He's taken this like a champ, no whining, or crying, he just accepted it. It truly sucks that I can't give him something fun.

Sorry man.