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

Pre-Op; Check

Hayden had his pre-op today. Our appt. was at ten. Things were a bit slow today; woring on Hopkins time. He had a chest X-ray and they were THRILLED to see a child. The radiology tech. told us that she rarely sees kids. This prompted her to bring out four prize bins and give Hayden more junk than Funland. So, a snake, a lizard, a bug, a sticker, two twix bars and a sour twizzler later, we were headed back upstairs for our check up. H got his weight/height checked, blood pressure measured and chest listened to. We went over the " day of" procedures and post-op expectations( we take those with a grain of salt). We headed downstairs to have blood drawn by the vampires. First vampire, no good. Second vampire met the challenge. Not a tear was shed and more prizes were awared. This time it was a sheet of Spiderman stickers, cookies and juice ( which I drank as soon as we got in the car).With treasures in hand, we headed out at 12:45. Went to Pop's and ate our lunch. ( and made sure the fish wasn't dead, yet)
I did successfully drop off Shiny Tail this morning. Let's all pray for is well-being...
We are spending the weekend doing laundry, getting hair and nails done, hanging with the family and packing.
I will post early next week with post-operative details.
Thank you to everyone for your love, support, snacks and gifts:-)

We have a special needs... fish

Or, just maybe, he is high maintenance. I have been falsely accused of that before. Being high maintenance, not special.I feel there is not shame in such an accusation. Anyway, Shiny Tail Lazorchak is a lovely Beta Fish. Hayden and I have been trying to teach him tricks. While you can't snuggle up wih a fish, they are not as cold as their reputation would lead you to believe. Shiny Tail can't stay home alone while we are gone for Hayden's surgery. The dilemna of where he should go and when has been our latest challenge. He has had many offers, but we have decided to take him with us to Casa Silverman. I told my mom we'd bring him on our way to the pre-op appointment. The conversation went something like this:
Me: We are dropping the fish off on the way to pre-op.
Mom: Just run him in, Daddy and I will feed him.
Me: It isn't that easy. He needs special water, the PH needs to be checked, chemicals need to be added and then he can go in.
Mom: Oh, you can do that. We can't do that. I think we will put him in the center of the dining room table, under the light, he will look nice there.
Me: ( Look nice there??? Like a centerpiece????)Doesn't that light raise the temperature of the room 5 degrees when you turn it on? I think that might kill him.
Mom: Jesus Christ, Allison, only you would have a fish like this!
Me( in my head): Didn't you " accidentally" kill Marvin Gaye(Kevin's fish) in a tragic garbage disposal incident? Hmmm...perhaps my high maintenance fish will have a better chance of survival if he stays elsewhere.

Hold onto your casseroles

As we get closer to Hayden's surgery date, we are getting a deluge of offers to assist us with anything and everything. We want to thank so many of your for offering to assist us during Hayden's hospitalization. We are so very appreciative of your genrerosity. It is apparent to us that we are blessed with an amazing support system. We are a tremendously lucky family. At this time, it is difficult to know what we will need (aside from the tasks that we have assigned to a few of you already). I know that many of you want to " do something", so just keep us in your thoughts and prayers and, well... hold into your casseroles:-)
Much Love-
A,R & H