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

Scheduled

Hayden's surgery, the Completion Fontan, is scheduled for Monday, March 30th. He will have a pre-op appointnent on Friday, March 27th. All at Hopkins.
We will discuss the surgery with him in the week or so prior to his pre-op.
Rob and I are ready. We are feeling really good about this and are slowly arranging our lives around it. Ya know, making sure we all have haircuts before surgery ;-) I am not spinning, yet...
We are slowly letting everyone know and will send out a mass e-mail as it gets a bit closer. We so appreciate the kind words and thoughts and prayers that have been offered. It means so much to us to be surrouned by so many caring people.
We are trying to " get things done" in March. Rob is in Myrtle Beach, Hayden is on an adventure with Pop and Grammy and I am , well , I am at work molding the minds of the future or something. We are painting our family room , ordering carpet, getting a new TV and waiting for our new furniture to come in. We are also tying to get in some skiing before it is officially Spring (not me- just watching). Rob and I are preparing for the relay portion of the Frederick Marathon.

Will post again soon...

And the ball is rolling

Hayden had a Cardiology check-up yesterday. It went just fine. He actually seems to like these appointments. Some of you know that this is a HUGE shift from when he was younger. Back then, he'd cry and scream and gag. Once he threw up all over me and I had to take off my shirt and wear Rob's jacket. ( Not a great fit. I resembled a flasher. Nice look.)Anyway, he was excited to go and even had his own questions to ask Dr. Brenner. ( He was quite satisfied with the answers he got.) He adores DR. Brenner, as do we. He gets my sarcasm which is always a plus since I become more sarcastic and abrasive when I am nervous. ( I know, this is utterly shocking)
We are gearing up for Hayden's next surgery, the Fontan Completion. We will be getting s surgery date shortly. Most likely the early part of April.
And so, the ball is rolling. Again.
I'll start making lists just as soon as we have a date:-) I'd better put that on my list...

Whoa, It's Winter

Winter is upon us and we haven't blogged in a while. We had a fabulous winter break full of the traditional Chrismukkah celebration. You know, spinning dreidels, decorating trees, talking about Macabees, eating candy canes, frying latkes, giving and receiving presents. Nothing confusing at all. Hayden did have a very well-thought out fear of Santa. He pretty much thought of Santa's arrival in our house, via chimney, as a home invasion. He just didn't get why " that guy" would just come into our house. He also mentioned " not liking anything he says or how he looks". Apparently, ho, ho, ho, offends the boy. However, the presents seems to decrease his fears.
We spent break, skiing, going to the aquarium, purchasing a new fish; Shiny Tail Lazorchak, cleaning out closets, hanging new exterior lights and visiting with many of our friends and family.
So, we are back to the grind of school and work. ( school being work for some of us!) We are hoping for a BIG snow and a great ski season for the boys. ( I'll just take photos and drink hot toddies).
Happy Winter to all:-