Day 14; The Ick's

Hayden had a really good day. Aside from having " the ick's", his term for the wretching that comes along with withdrawal, he is doing well. He was cleared to eat regular food, but is unable to do so due to persistant gagging. He is is better spirits and starting to act much more like Hayden. He sat in a chair three times today, watched videos, read books, had a central line removed as well as one of his peripheral lines , took two steps and gave me a real kiss. He still has a small chest tube and a peripheral line.
The Easter Bunny brought Hayden a basket and it was fulll of cool toys and things he likes ( all of the kids got them). The Bunny stopped to see Rob as well. He brought him a bottle of Patron. Clearly the Bunny is being impacted by his celebrity status. Perhaps he'll appear on the next Celebrity Rehab. Dr. Drew could deal with his mother issues. Maybe Santa, The Tooth Fairy and The Great Pumpkin will deal with their addictions as well. I mean Santa is obviously a food addict, The tooth Fairy is a cleptomaniac and the great pumpkin is a pathological liar.
But I digress. Hayden is moving along. Still have some issues to deal with, but he is looking like himself and gwtting back his Hayden charm.
Slow but steady wins the race.

Hayden wanted me to tell his Pop that he can't wait to play tomorrow and that he MIGHT have a bird in his ear.

Day 13 cont.; Sat in a chair

No, not me, Hayden. I have been sitting in chairs for weeks.Trust me, my tush is numb.
Hayden had a good day. He was having less withdrawal symptons,peeing in a urinal, had his catheter removed as well as his NG tube. He is allowed to drink clear liquids.( they brought him iced tea. Anyone else think this is an odd beverage to serve a kid?) He even got to get out of bed and sit in a chair. He is far less terrified today.
He moved to a room for two in the PICU. They had some critical patients that needed to move into his room. His new room is much quieter.This is great for him.
He seems to be on a normal sleeping schedule. He slept all night and stayed awake for all but 1.5 hours today. He went to bed at 9 this evening.
We brought in his toy/book/dvd bag and his clothing and toilet articles. He really wanted his " regular" toothbrush.

Happy Easter to those of you that it applies to.
Balance your matzah with fiber, to the rest of you.

Canal Run running girls- we need to CRAM. That marathon is in THREE weeks.EEK!!!!

Day 13; out and terrified

Sorry for not posting last night. I was just too tired by the time I got home at 11.
Hayden was extubated and it went very well. He was breathing comfortably. He was very scared, upset and unhappy. He kept tearing up and crying. Anytime someopne even wlked by he froze up ans cried.
Although we do have a team working with us on withdrawal, their instructions were not followed, exaclty, and by last night he was showing some symptoms. They went up and his dose amd are revisting the withdrawal , again, to formulate a good plan. I will not allow that t happen
Hayden has a small pleural fusion ( fluid) on his right side, now. Nothing like what had to be drained the other day. It is being watched, ut they think moving around and some extra diuretics will help that.
I am headed down, now and will update later.

Day 11: You don't want to get a middle of the night phone call,

but I did. Rob called in the middle of the night to say that Hayden had to be re-intubated, emergently. I don;t think you are supposed to drive 80 MPH down 83, but it got me there fast.
After a full day of withdrawal, the night got no easier. Hayen began having breathing issues; retracting and struggling to move good air. They tried a face mask, bi-pap and finally had to re-intubate. It was very touch and go. ( I'll skip details) He was not in good shape. The culprit was a hemothorax ( a pool of fluid/bloood) that was pressing on his left lung and compressing it. They ended up putting in a pigtail ( small drainage tube) to get out the fluid. It immediately drained a TON of fluid. About a bottle and a half of wine worth. They made him comfortable and he immediately improved. He is sedated, but they are already making him ready to be re-extubated some time Friday...morningish. They got him back to all of his regular meds. An echo was done and cardiac function remains good.
Too many close calls for that kid. I can't even count them all anymore. Although, Math is not my strong suit.

I'll be posting late in the day until next week. The woman that runs the Library at Hopkins took off for Spring Break and I can't access a computer during the day. Rob has his lap top, I don't have mine.

Think out, out, out and NO WITHDRAWAL ( pain services is following him, now.)

Day 10; Once, Twice, Two times addicted

Today was not a great day for us. Hayden is OK and cardiac funtion is good, but he went into fill blown withdrawal. I'll spare you the details, they are not pretty. It was unpleasant. They are still setting him straight. This is the second time he has gone through this. Both times, I was the one with him. I truly hope none of you ever has to watch someone go through withdrawal.
Pain management is working with him to get him " off the juice".
It is all part of the process of getting well.
Still in PICU and will remain there for a bit. H is taking oral meds., but is yet to eat. It was our project for today, but the vomitting got in the way.
Hoping for brighter days.

Day 9; In the Money

First things first. We came in second, thanks to UNC, and one some cash:-)
Sorry to post so late in the day. Now that Hayden is awake, Rob and I are tag teaming. He is doing nights and I am doing days. Rob likes nights. It is quieter at the hospital and he doesn't have to deal with visitors( no offense visitors). He can just hang out, work, check mail, etc. He is more comfortable with me dealing with medical matters. And he is a good day sleeper. With that said, I didn't get much time to leave Hayden and post. So, I am posting and going to bed so I can relieve Rob around 7am.
Hayden is doing great. He is SLOWLY getting his voice back and transitioning to oral medications. Today was a day of " tweaking" things, but that is fine by us.Adding in his blood thinner and getting the dosage right will take time. He is still really tired, but has been off of pain meds for 36 hours. We aren't seeing any signs of addiction, so we may be in the clear. He isn't even taking Tylenol. He is hard core:-)He has some fluid around his lungs. This is pretty typical, but they are just watching it. He sipped some water today and will try a popsicle tonight... if he is awake. He has been twitching his nose like a bunny, and it turns out that his lips are chapped and bothering him. We slathered him with some Bert;s Bees and he is more content. ( I thought he had sen too many Easter candy commericals!) He still has some things to work out, but we are moving forward.

Jen Burns, I got your message and yes, you did post:-) Yay!!!!!

Murphy's, hope you did OK with the alarm. The police didn't call, so I guess you did. Or you are in jail. Someone check on them.

Passover begins on Wednesday Evening. Oddly, it is one of Hayden's favorite holidays. Probably becaue he doesn't actually keep it ;-)

Off to nighty, night land.
I will post tomorrow during the day.
Keep up the thoughts and prayers. They are wonderful. ( And so are you guys!)

Day 8; continued

EXTUBATED!!!!!!!!!!! At about 1:50, Hayden was extubated. So far, so good. He seems really comfortable and is breathing well. We hope it stays that way. He just needs to get his voice back.
One of us will stay with him tonight. Rob says he is staying. I say we should let Hayden chose; that would still mean Rob is staying.
So, one less thing. We still have other issues to deal with,but this was a BIG step.
Hayden's surgeon left for Cuba yesterday. BUT, he appeared at 2pm. Trip was cancelled. We thought perhaps he heard Hayden was extubated and flew back;-)
Hauyden's nurse from last night just called in to see if the tube was out. I think he was threatening to come by and do it himself!
All for now.