Day 7; but he peed in a urinal

We were so excited. We got here this morning and Hayden interacted with us. They stopped his sedation and were getting prepared to extubate him. He even peed in a urinal. He was mouthing things around the breathing tube.( like, " yes, I have to go potty"). They even removed his last chest drainage tube. But, just as we were moving to extubation they realized that his airway is inflamed from being intubated for so long.This can be a problem following extubation because it could, potentially, make it more difficult for him to breath. If that happened, he'd get re-intubated and stay that way for days. ( BAD!!!!) Sooooooooo, they startted a steroid to reduce the inflamation. This should work within 24 hours. Because he will remaim intubated until tomorrow, they turned back on his sedative.No more interacting.
We are glad that they are being cautious. It isn't worth the risk, but it is disheartening. Naturally, we want progress, but mostky we were both looking forward to interacting with Hayden, today.
So we went from peeing in a urinal to being knocked out, again.
All else is quiet. Quiet is good. Just a long day.
We had to leave at 7 last night. A baby came in an needed ECMO and they cleared the room until after ten.We went to dinner like real people.
Sorry, nothing witty to say today...

Day 6; Same old Hayden

Hayden had a really good night. He did have a bit of a fever, but it has subsided and they started some antibiotics. It is par for the course with him being intubated for so long. Today they are moving towards extubation. They hope to do it by tomorrow morning. He lost a chest tub this morning, too. All good progress.
They are backing off on his sedation so he will be ready for extubation. He is stil mostly asleep, but does perk up every so often. He tried to talk over the breathing tube this morning; he might have been cursing at us ;-) At one point as he was dozing back off we said our bedtime schpeil to him. " Hayden have a good night sleep, Hayden grow, Hayden stay healthy, Mommy and Daddy love you very much and we'll see you in the morning". We usually pause before " morning" and he says it, so we did...and he mouthed it over the breathing tube and went back to sleep. Same old Hayden:-)
Let's hope we keeep up the slow steady progress:-)
A-

Day 5; continued

Sorry to post so late in the day. I have been using the family resource libray computers and they were closed for the day today. Rob has his laptop (I am on it, now), but he wasn't sharing nicely.Tsk, tsk.
Hayden has had a quiet day of steady progress. We are happy with that.He is still very sedated, but occasionaly opens his eyes or squirms. He responds when his nurse touches him for assessment. He tends to pop his eyes open or squirm at the sound of Rob's voice. There is no reaction to my voice...some say he has already learned to tune me out. ( No one would dare do such a thing!)I say that my voice is so melodic that it lulls him rigt back to sleep.
We are once again hoping for urine. They pumped him back up with fluids when they took him to the OR to close his chest yesterday and he needs to lose that fluid in order to get extubated. We hope extubation occurs over the weekend...maybe...hopefully.
So, put in the pee prayers:-)
Off to pass the next half hour until shift change is over...we have given up on dinner in this place. Very bad.

Morning Day 5;Awesome

Hayden's nurse said he had an awesome night. We LOVE that! He needs to stay on this path. They have stopped paralyzing him, and he is starting to squirm a bit. That should increase throughout the day. We will no more after rounds this morning.
Rob and I both, indendently, called our house to hear our outgoing message. Hayden ison there and we both wanted to hear his voice ( yes, this is very Lifetime movie-ish).
We encountered some gospel preaching by the bed next to us yesterday. It was...vigorous, to say the least. We couldn't look at each other and our nurse hid. Rob promptly left the room. I sat there for a good ten minutes as it became more and more " enthusiastic". I am not thinking g-d wants us to give our blood in sacrifice, but I got to hear all about it. Loud and clear.
There were also several rule breakers. They were related to the preaching folks; cell phines, too many people, sneaking in food to their chuild on a restricted diet. I don;t tolerate rule breaking; but was npt allowed to write referrals or assign detentions. Rob keeps remionding me that so9me of these people could cause me great bodily harm;-)
I'll post later today with more concrete details.
Shiny Tail seemed vigorous last night when I changed his water. Fin prints indicate that there has been no bait and switch.
Thanks for following us:-)

Day 4; A surprise enclosed

Pun intended. Hayden's chest was closed this afternoon. We didn't think it was happening today, but at 11:45 they came and told us they'd be taking him in 30 min. Naturally, it took a bit to get started, but his chest is closed. We can no longer watch his heart beating; that is a good thing. (I think it freaked out my parent's rabbi the other night- he almost lost it). He is back in PICU, resting. They will monitor him and tweak things over the next bit of time. He is really just going to chill for a day or two.Once things are settled and he has gotten off more fluid ( yes, they pumped him with more in the OR and still are- so he will need to get to a point where he doesn't need fluid and then needs to lose the fluid. It is a bit of a dance), then he will be extubated. All in all, this is progress. Slow, but we will take it.
This morning was a bit of a milestone. Hayden's saturations ( oxygen level)hit 91!!! That hadn't happened before and I was giddy. I saw 88 yesterday and was cheering for it to hit 90, but it didn't. Today, I glanced over and saw a 91:-) It is the little things.
Hayden is still not out of the woods, but is perhaps peeking through the trees. I really miss talking to him. He is the only person I know who talks as much as I do. We did share my ipod today- we each had an ear bud- and I even played some of Rob's "bubblgum" that Hayden enjoys.I played Pink," So What", one of his favorites.
On another note,I did see Shiny Tail last night. Alive and well. He wasn't moving at first,but he was just napping. I'll get a good look at him tonight when I change his water., check the PH, add the chemicals and watch him swim.And yes,I might even sing to him...

Keep up the kind thoughts and prayers:-) You have all been too kind!
Hugs-
A & R

Day 3; May your day be filled with urine

Thank you all for your kind words and posts.
The theme for today is urine. Hayden was pumped with tons of fluid during surgery and post-operatively. Now, he needs to get rid of the fluid so he can have his chest closed. So, we keep cheering for more urine:-) His urine output is great and if it continues, his chest will be closed tomorrow ( or Friday).
Hayden remains stable. He is still intubated and paralyzed...although he wiggled around a good bit this morning- ya can't keep a good man down. They have been able to cut back on some of his oxygen and nitric oxide, his oxygen levels are good, blood pressure is steady, we are content with this. Little by little he is getting there. We hope for steady progress. At this point, that is all we can hope for.
We did leave last night to sleep and shower.As long as Hayden is " asleep", we will continue to do that. He is in great hands in the PICU. Many of the same AWESOME nurses cared for him following his previous surgeries.
Although we resided at casa Silverman, we did not actually SEE Shiny Tail. I suspect he may have met with the garbage disposal...I hope there is not bait and switch planned.Mom, FYI- I can ifdentify that fish. I intend to check in on him tonight.
Keep hoping for steady progress. Keep us in your prayers. We are not out of the woods.
A-

Hayden Being Hayden

Well, Hayden has never made surgery easy. I think he tries to test us or age us. Yesterday was no exception. What was supposed to be a 5 hour surgery was ten. They decided to/needed to do an extra repair ( tricuspid valve) while they were in there. He was on and off the heart/lung machine twice; almost 3 hours on it. That is a LONG time. So, his post operative couse was a bit dicey. His chest was left open ( this was the case with his first surgery, too. It'll be closed Wed. or Thurs. Because of this he is still intubated, sedated and medicinally paralyzed) We were told that those first twelve hours were crucial and that he was in critial condition. It was possible he'd need ECMO, a form of life support. He was bleeding a lot through his drainage tubes.
However, Haydy had a good night. He got himself stable and seems to be settling in. The goal today is to get off some of the extra fluid from surgery,plasma and blood transfusions with Lasix doses. Once he has gotten off the fluid, they can close his chest and move to extubate him. The surgeons would like to close on Wed., but I have a feeling it'll be Thursday. Until then, Hayden remains asleep.
Rob and I stayed bedside last night. Wanted to make sure Haydy was OK. We each caught a few hours of sleep and a hospital shower ( lovely). Because he is asleep, we will both leave tonight and sleep at Casa Silverman.
Hayden's surgeons AMAZING) feel as if the surgery went well. AND he is PINK ( as opposed to blue). It is so cool- his little toes are perfectly pink. I just want to kiss them; and you know how I feel about feet...ick.
Keep up the prayers. We are looking for a nice, stable day. We really can't tale another day like yesterday.
Thanks to the Burtons for our package- what a sweet surprise.
Congrats to the Alipgini clan on their latest GINORMOUS addition.
A&R