Rob is bored

Since its 4:00 am and I already worked, took a nap and a walk, I figure I would give this post thing another go at it. Sure Ali will post her daily note too.

Hayden is having a great night. Over the last week we have developed a nightly routine to pass the time. 8 to 9 take a bed bath, get weighed, take our last batch of meds, turn on the NBA playoffs (NBA is painful to watch, but it is really helpful to pass the time.) Than we pick out a snack tonight was sun chips. and than we figure out a new game to play for the night. Tonight was Nintendo Game cube (kicken ol school) ,before it was UNO, Game boy and Leapster. he feel asleep around 11:00. Should be up around 6 for the morning so I get an hour to hang with him before heading out at 7.

His nightly lab results, saturation (o2s) and blood pressure are all looking good for tonight. plan is to increase his captiprol with his morning dose so hopefully that goes well today.

To watch Hayden's progress the last week has been amazing. This kid is truly a gift and one heck of a fighter. We still have a bit to go, but to watch him smile, laugh, play games, walk a little more each day is one of the most amazing things I think I have ever seen. Praying that he keeps making great strides, so we can get closer to heading home.

During all of this Ali has been amazing, can't believe how well she deals with the doctors, nurses during the day. Guess Hayden and I owe her one hell of a mother day gift. ;) hmmm have to come up with something, Hayden and I talked about it tonight. right now Hayden thinks we should get her a hanging vegetable planter based on a TV commerical we saw. glad we have a little time to come up with plan b;)


Thanks for everyones support, prayers, thoughts etc... during all of this we really appreciate it so much. Now back to surfing the web.... hmmm facebook, ebay, washingtonpost.

Day 31: Feeling Salty

Hayden is on a TON of diuretics in order to keep fluid down. While the fluid has come off, so have some important things like potassium and sodium. We have been replacing the potassium with a nasty supplement. Apparently, the sodium supplemet is not only nasty, but a tremendos volume, 3 X a day. As opposed to torturing him with that, they decided to have him eat extra salt. We were brought a huge bag of salt pckets and told to put salt everything. Example; Crab Chips;poured salt on them, Salt and Vinegar Chips; poured salt on them, chicken; poured salt on it. Really gross. I am sure in two days they will tell us he needs a low salt diet.
Aside from eating massive quantities of salt, Hayden had a great day. His antibiotic course ended- white blood cell count down, at 5,000, he is taking amost all meds. orally, he is on the second to lowest dose of narcotics and will be weened off totally within a week, his saturations are in the upper 80's and lower 90's, he walked really far, they started the paper work to order us a machine to test his INR ( cumadin blood level) at home- don;tr freak- it isn't a big dea ( he'll be on blood thinners forever) AND they started to transition him from the IV med,. that is only given in the PICU to the oral version- this will take a bit to complete- they go down on the IV version and gradually go up on the oral.
He worked really hard in PT and is definitely getting stronger. He wore himself out and slept through most of pop's visit ( AGAIN) and all of Jon's visit ( thanks for coming, it was great to see you!)He had also gotten up for the day at 4:45 am...
I did the dash to POR last night. My house was hot as ...well, you know. I sorted through the mail; mostly junk, grabbed a checkbook, stamps and some summer clothes. Trac and Mel, thanks for the goody bag. Juice boxes of wine totally ROCK!!!!! An alocoholics dream...someone was really thinking.
Hayden's class made him a video- I am so excited for him to recieve it, I know he will be thrilled! ( Thanks Shannon- great idea!)
We had much peace and quiet without a roomate;-)
Looking forward to another quiet day and a visit from Uncle K-dog and Aunt Jenn.
Stay away from the pig farm...

Day 30; DAY THIRTY...EEK!

Thirty days. That is long, right? A long time to be in the hospital, visit the hospital, sleep on an air matress, get six hours of sleep, not go home, not have a drink ( I feel like I am in rehab), not see " my kids"/colleagues, miss seeing my tulips bloom, not see my friends ( most of them), not go to school ( Hayden or I), not leave he PICU, not cook...long, right? ( sigh)
Well, day 30 is off to a nice start. Hayden and Rob are hanging out, starting their day. Hayden had a good day yesterday. He worked really hard on PT and " the plan" seems to be slowly working. All of his lab results were good. He enjoyed his visitors and his time with me. Hayden really spunks up in the evening. He ate a good dinner, watched basketball and played Uno with Rob. We are hoping for more continued progress.
Our rude roomate left right at shift change. I got to be with her ALL day. Rob did not. She enjoyed a fulk day of being rude to me and the nursing staff. Big fun.She found it her place to lecture me on the importance of staying home with a child who has medical needs; as opposed to working outside the home. She clearly doesn't know that work is a huge part of who I am and that I'd be a bad person if I stayed home. ( I wasn't goinbg to explain it to her, that would involve talking to her and I was NOT doing that) Rob and Hayden would likely move away and leave no forwardong address. Plus, let's be real, I love nice things. Shoes. Travel. Wine. Dinner out. Clothes. Spa trips.Lattes. These are items a working woman can afford ( and justify). But thanks for the advice nosey, bi- atch.
I am popping home for maybe an hour tonight. I'll leave around 7pm to head over there. Hope to be there by 8:30 atthe latest. I need to grab my mail, a check book, some warm weather clothing, and leave $ for the cleaning lady. Then I'll jump back in the car and return to casa Silverman to sleep.
Oh, Shiny Tail still swims. Amazing.

Day 29; Chowing Down

Hayden had a really good weekend. He was getting sick from the pediasure he was told to drink ( along with three meals a day), so it was discontinued and regained his appetite. He requested...McDonald's for dinner; a wish we granted. He did get sick, last night, from a potassium supplement ( it is NASTY and made him gag), but he recovered quickly... and had to retake it after he ate a snack. He then decided he needed crackers, a bag of chips and a popscicle as a bedtime snack.I am hoping he continues to have such a voracious appetite.
I continued to fill in for PT over the weekend and things went well. He is getting stronger each day. This enables him to do a bit more. He got a soap and water bath last night ( in bed) and looked really cute and clean- this was prior to the pre-bedtime buffet.
Very late in the day we got a new roomate. Apparently, they were not happy about it and decided that yeling at the nursing staff and me was a great way to handle it. I cannot, ever, imagine treating the AMAZING people who take care of my child that way. Fortunately for Rob, they left for the night.Unfortunately for me, they will be there all day today. As most of you know, my ability to bite my tongue is really an inability. This should go well. I hope I do not get removed by security. If I o, I think I;ll yell something abot knowing my rights.
I must mention my favorite healine this morning " Swine Flu; Is this the BIG ONE?". Really??? We are going to call this THE BIG ONE? Aren't we still at war? In the throws of a financial recession? Battling Pirates ( Arrrgh, I must mention them...still fascinated)? Perhaps we all just need a vacation...greats deals on trips to Mexico.

Canal Run Girls- does a weekend night work best? Figure it out and let me know.

Day 28; Farewell Golden Girl; hello Swine, arrgh

I awoke this morning to the news that Bea Arthur had passed away at the age of 86 , the World Health Organization had issused an Emergency warning regarding Swine Flu and that those salty Pirates were at it, again. ( I do find the pirate thing fascinating). Great. I can now add Swine Flu to my list of worries at the hospital. People should not be forticating with the pigs. Seems simple.
Aside from my world news worries, all is well. Hayden continues on his slow, steady path. We are on day four of " the plan" and his body seems to be cooperating.Poop is happening, lab results look good...fingers are crossed. He is in good spirits. There is not PT on weekends, so I took on that job. We were out of bed, walking, stretching, playing Simon Says, sitting in in a chair, etc. He is a trooper and worked really hard for me. He also asked me to leave last night...he wanted Dad-time:-)
Bush's thanks for coming down- sorry the timing didn't work out great and traffice was awful. I would have loved to catch up. I have things to say- we will have to try again.
Thanks to the Canal Run crew- Rob says the yard looks great. I know a few of you caught a glimpse of him yesterday. He had to get his car emissions tested and had his own check up at the DR. He decided to sleep at our house since he was in Frederick.( He says our bed is better than the air mattress...shocking!) I'll be there late Wed. evening to pay bills and collect mail and sleep.
Thanks for all of the cards, etc!
I have a morning date with a handsome dude.

Day 27; Sweet Dreams

Hayden slept great last night. He went to bed after ten and slept until 5:30 this morning. He was likely exhausted from his hard work yesterday. He got to walk to the window in his room, get up on a stool and look outside. He commented on he tall buildings, sunshine, cars and trucks ( sights and sounds of Baltimore City- not smells). He took a two hour nap, but was up the rest of the day. He is such a strong kid; even though it is really hard work to regain his stregnth, he keeps wanting to do more. He amazes me, daily.
No real medical changes. He re-started his blood thinner yesterday,pulled an arterial line ( freeing up his right hand), dropped his narcotics back,pooped, and went down a bit on his oxygen( cardiology wants him on oxygen for now- part of their " plan"). Other than that, they are still trying to leave everything else the same in order to increase cardiac function. Slow...but that is OK.
I did hang up the cards he has received. He likes that.
My parent's cantor came in to see Hayden and he thought my Dad was Hayden's father. Hello??? The man is 62!!!! ( sorry, Dad).
I am considering writing an Ode to the Air Mattress. ( The one Rob and I have slept on ,at seperate times, for the past month.) Yes, my parents do have beds, but they are far to soft for " Goldilocks". Perhaps, I'll ponder my ode today.
I was also considering writing an ode to my long, lost friend Vodka. I do miss her so, but have no energy( or time) for her right now. Soon enough, my love, you, me and a Princess Cocktail on the deck. ( although the deck furniture is still covered and in need of cleaning).
Off to my little love:-)
Enjoy this beautiful weather!

Day 26; I see you...

Hopkins has an alcove on the first floor of the Children's center that is filmed and broadcast, 24/7, on Channel 60. Originally, channel 60 was created for children to wave or hold up signs to ther siblings who were hospitalized. The sound isn't activated, most of the time. They did have a Milkshake concert ( so cool) there last week that was broadcast for kids to watch. There is no sign indicating that this area is filmed. Most often people are walking by, sitting and chatting, eating or sleeping in the area- all broadcast on channel 60. I often pause at channel 60 to see what's up. I am fairly certain that it becomes rated R in the wee hours of the night. Yesterday, while channel surfing for an approved cartoon (we are a bit picky about what H watches), I paused on channel 60 and was telling Hayden about it. Lucky us, there was a guy sittig there doing some work on his lap top. And picking his nose. And examining it. And eating it. And repeat, several times. Fortunaty, H's nurse appreciated this incident with me. It was fabulous.
Nothing much new with Hayden. He is a bit backed up, again. We are working on that. His left leg was sore from he cath. We have hime a day off to chill. He will get back to work this morning. They are trying to boost his caloric intake and get him off of all IV nutrients. Yesterday it was decided that he should eat at least 3 meals a day and drink three bottles of Pediasure. This would be ok, except the child has only been allowed to eat for two day stretches. After that, something happens and they do not allow him to eat. So, he got down almost 3 bottles of Pediasure and then threw up a bit. His stomach just isn't used to mass quantities, yet. Plus, he is backed up and bloated- big buddah belly, again. We will continue to work on that today.
He slept well overnight and was playing Ms. Pacman with Rob at about 6 am.
Looking forward to more peace, calm amd slow progress. And kisses. I like kisses, from Hayden; not the nose picker.

Snook- Hope to see you today.
Dicky Brannigan- yes, Hayden would LOVE to see you. Aside from, Rob,Pop, and Papou, you are his favorite guy to snuggle up and kiss.

Day 25; Don't come a knockin' when this heads a rockin'

This will be short. I have a rockin' migraine. The kind where you need to ice your head and curl up in a cold, dark cave. Instead I will go sit under the flourescents at Hopkins. That'll make it better.
Hayden's cath. was a fact finding expedition. We were able to confirm that his cardiac function isn't very good. The doctors were able to formulate a medical ( as opposed to surgical) plan. Something to try; no promises. They will be trying a number of things to attempt to improve function. ( medicine, blood, etc.) Most importantly, they think the heart needs some time. We are proceeding cautiously, but hopefully.
We may have been unclear in previous posts. Some of you are under the impression that Hayden is doing very well. He is coming along well, socially, but physically, he remains in quite critical condition- back to that whole heart function thing.
Also, many of you have inquired about visiting. Truthfully, we are attempting to avoid exposing h to a zillion people. Less people, less germ exposure. Also, PICU is an unpleasant place to visit- not for those with a weak stomach. ( A visiting physical therapy student ran out of our room to vomit on Tuesday). Children under 16 are not permitted in the Children's center. If you are inclined to see us, drop us mail or call and we can work it out...meet you downstairs for a meal and have you pop up to say hi to H. He doesn't really like it when Rob and I do not give him our full attention:-) Butm we can try to work it out.
Please keep praying for Hayden.

oh yeah

Sure Ali would have added this, but since it happened during the Day shift I forgot until I hit the publish button. Grammy Lynn and Papou Dave came down today and hung out with hayden and read a bunch of his favorite Mr. Books. Sounded like Hayden was having so much fun with them, he told Ali to leave the room so he could spend time with just them. ;)

Cath day.

2:30 today (Well Hopkins time could be any where from noon to 4.) the Cardiology team is going to do a Cath on Hayden. After much debate The doctors want to go in and see how everything is looking as well as see if there is anything they can do in the lab to improve his Sats currently sitting around 75 to 85 they are hoping to see 85 to 90. So praying that everything goes smoothly today in the lab and they are able to remove the breathing tube later today so we can get him back on track.

On other news, Hayden is having a great night, his Uncle Dave stopped by so we watched some NBA basketball, played a little Mrs. Pacman watched the Bee movie for the 21st time and read some books. Hayden was actually cheering for the lakers and saying "Miss, Miss, Miss when Utah was shooting foul shots. Good to see some of the old Hayden. We were cheering for the Lakers because they had yellow jerseys not because we like them. We are on the Cavs. bandwagon. ;)

Hayden also walked 16 steps today and sat in his chair a bunch, so hopefully the cath goes with out any problems and we can get him back on the healing path again in another day or so.

Thanks again Murphys for all the help around the house. Feel free to watch any of the playoffs over there, the Fridge is full of beers and the HDTV is all hooked up in the family room.

Ali, Rob and Hayden

Day 23; to Cath. or not to Cath, that is the question

We are still unsure if Hayden is having a catheterization on Wednesday. As of yesterday, there was no real plan. No one is sold in either direction. We are in a holding pattern. We will know some time today- ish. We will have to know by midnight, because he will need to stop eating and drinking.
Yesteday was more of the same. We worked with PT,took a few steps, sat in a chair, ate, watched movies, listened to music and chatted. Hayden really wants to come home and gets sad, occassionally. He really misses Isabella and we are writing her a letter today. ( He says she is his best friend...temptress) He and Rob may skype her when his voice gets stronger. Other than that, he is an amazing patient. He really liked spending time with Julie, his nurse last night.
His chest is getting itchy as it re-heals, so we are taking turns rubbing it ;-)
We are still on ICU meds. No plan to restart his blood thinner for several weeks.

Day 22; Bossy

The boy was a bit bossy yesterday. I guess he figured it was time to put us to work ;-)" Mom, I need a drink." " Mom, let's talk"."Mom, you need to look at the video." " Mom, stop talking to other people." " Don't talk to Dad." He is becoming more and more like himself ( not the bossy part); I even got a laugh out of him an was told that I was silly(I am, usually) and he loves me. ( I am loveable, too!)
We had a good weekend. Things remained stable and Hayden got to get out of bed several times. He is very weak and it is really hard work, but he is trying so hard. He understands that getting well will be hard work for him.He called me his coach yesterday and said I was like Gary Williams;-)
He still has a way to go. There are many meds. running that are " intensive care" meds. Sometime this week, they will likely begin to transition him to other meds., but that process takes time. Still watchiung cardiac function. White blood cell count is slowly dropping, etc.
We were happy to have some peace and calm, for now. Hoping we continue like this.
He was up most of the night ( sorry Rob), so I may not have much of a play partner today...

Murphy's- Angela's $ is on the island. My parents dropped it last week. Can you do the alarm thing, again?

Marra's- I THINK our furniture is in this week. I'll call you- we might need to arrange to meet there and have you pick up the sofas and chair.

Day 21; Let it flow, let yourself go

Poop has come! H pooped yesterday afternoon, in the evening and once in the early hours of this morning.YAY for poop!!!!!!
We had a nice, quiet day yesterday. Hayden got all 4 chest tubes removed. This enabled him to get out of bed and into a chair. He was quite happy in the chair and stayed there for 4 hours. He even took a nap in the chair. This mornibg we have a " date" to take at least 5 steps before getting in the chair to eat breakfast.( I'd like to nap in a chair, too)
He was much more like himself yesterday. He even told me he was done. I told him I was, too, but that we'd need to stay a while longer. ( I could prbably remove his IV's at home, but it seems like a bad idea)
Still tinkering with many meds., watching fluid,heart function etc.
Looking for more quiet time today.

His lab schedule was switched to noon. So, no white blood cell count update at this time.

Hope you all got to enjoy the gorgeous weather. It looked lovely.

Off to my boy :-)

Day 20; 18 on the 18th

No, we aren't playing 18 holes, but that would be pretty sweet:-) Hayden's white blood cell count dropped to 18,000. That is still high, but continues our downward trend.
He had a nice, quiet day and night. Slept a ton, but was sweet when he woke up.
Still no poop. They may let him eat to see if it helps. He was given a number of things to " move things along". They removed his catheter ( again) and one of his 4 IV lines. Down to three IV lines and 4 chest tubes.
Because we have been in PICU for so long, they have granted us a membership to the Hopkins staff gym. It is supposed to be nice and even has an indoor track. Rob will be making ready for his first tri at the end of May.(Chris Marra, are you using that new bike???)

Happy 13th B-day to G.

Hoping for more of the same today. Off to see my littile love.

Every time I type " count", I leave out the " o". Thankfully, I notice before I publish the post. Bad, very bad....

Day 19; There is a back up

Hayden has a bloated "buddah belly". He is " backed up" from the narcotics. We are trying to get things going, but he is not very inclined to go in a diaper. Eventually, it'll blow and he won't be able to hold it. ( Yuck) Until then, no food or drink.
He had a quiet,restful night. He was up a few times \ and he and Rob watched a movie and chatted.
His fever broke which dropped his heart rate back down (YAY!) AND his white blood cell count dropped TWICE during the night. Hoping the downward trend continues. While we may never know what the infection is, hopefully the broad range of antibiotics are attacking it.
Hoping for good today. Will post again later today with more concrete info.

I love bread. And sleep.

Thanks you for all of your love and support. We know how many of you are praying for Hayden and it is wonderful. We hope that those of you who do not know him, get to know him ( check out my post from the fall on the reasons why I love him). He is simply amazing and doesn't complain at all. He has requested to go home, but just keeps right on fighting the good fight.

Off to the hospital...

Day 18; Sloppy

My last post was sloppy. I am a bit sleep derprived.
Hayden is seeing some improved cardiac function today. He will still need a catheterization in the near future (maybe tomorrow??? maybe once infection is under control) so they can do a few things in there and, hopefully, improve function.
His infection is raging. They have no idea what is causing it. Infectious Diseases is follwing us, but nothing so far. He is on 4-5 antibiotics ad none of them are making a difference. Nothing has cultured positve. It is very frustrating for all of us ( parents and doctors). Watching your doctors cry isn't a good thing.
He is sleepy today, but sweet when he is up. He is drinking and can probably eat again tonight...maybe.He asked to talk to the doctors this morning and told them he wants to go home and that he wanted a drink. He asked his nurse's name as well. This is better than whathe was saying before; " get the girl".
All in a all itis restful day for Hayden. We will take that.

I am looking forward to the end of Passover.I have taken to fasting til dinner.

My parens drove all the way to our house yesterday to grab our mail and my checkbook. I went to pay bills this morning ( in my sleepless stupor) and I had ONE check. UGH. So, I wrote my Mom a big check and used her checkbook to pay my bills.

Praying for better days. Not seeing them.

Day 17, Posted on Day 18

Quick. Post. Came home at 3:30 and slept til 6:30, paid bills, did laundry, headed back down.
Yesterday was a very difficut day. Hayden's surgeons decided that the fluid arounds his heart was a major concern and they needed to go back in and drain it. At 2:30, yesterday, Hayden had open heart surgery, again. They got the fluid and thinks look better. Still rocky. He was extubated fairly easily. Got some blood over night, spiked a fever and is in pain. He is in the most pain he has been in because he is so alert. He was a fresh incision and 4 chest tubes. Still many issues.
We are praying for improvement...

Thank you all so much for you kind words, thughts ands prayers. You ae all amazing.

Nicole- We met at Dutch's Daughter last year, i do know who you are :-)

Will post again tonight.

Canal Run runners- will Terri take my spot?

Day 16; Please pray

Hayden is in very critical condition.
He went into respiratory distress today. They had to put him on Bi-pap, pressurized oxygen. They drained off some fluid with a chest tube, but it isn't the problem. He has a raging infection, sepsis, and they have no idea where it is coming from. There are also some cardiac issues, but they aren't sure what they are. They are trying to rule things out, but it will be tricky. They arte putting in an artrial line and a central line. He will need a catheterization to look at his heart.

Please pray for Hayden. More than ever, he truly needs it. Thanks for your love amd support.

Same ol same ol

Ali was too tired after a long day of Hopkins, so figure I'd post a quick update. (sorry in advance for the grammer mistakes, Ali should be back to posting tomorrow. ;))

Nothing really new to report as far as progress goes.

Hayden seemed to have a little more energy today, Sat up, took 12 steps, colored in a book with me after dinner.

He ate honey nut cherrios this morning, Hayden being Hayden looked up at Ali and said we should share breakfast together. but since its passover Ali had to turn him down. ;) Glad the boy still has nice manners even after all this. ;)

For lunch and dinner he ate some chicken, seemed pretty happy to be able to have chicken again. ate an entire strip for lunch and than 5 or so bites for dinner.

Tomorrow they may work on his with draw medication tweaking a few things to hopefully make things go a bit smoother. (Fingers crossed that this works.)

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.

Day 8: Out, out, out

You may have guessed, our goal for today is to get the tube, OUT,OUT, OUT. It sounds like the steroid magic is working ( thanks Leener!). His nurse overnight seemed to think we'd be extubated today.The inflamation has gone down. At 6, they cut back on his sedative, so he should be alert, again, this morning. We are looking forward to that.
I hope the blog is keeping everyone up to date. I do really miss talking to those of you that I usually talk to almost daily( Snook, Yoko, Smelly, Stup-id,Mother of the Temptress, etc). It is just hard to find time that I am not with Haydy. And, I just don't want to repeat my story, well, repeatedly. Plus, I am exhausted.EX-HAUS-TED.
Rob on the other hand has been talking to more people than he usually does. Go figure;-)

I want to thank everyone at Timber Grove for their generous gift(s). You guys have been so supportive over the years. We are lucky to have you in our lives. I know my Mom would agree:-)
Aunt Iris and Uncle Leon, thank you for the gift. It'll get put to good use :-)

Think good thoughts for today. Extubated boy, chatting and peeing in the urinal. (It is TOTALLY Rob's job to assist with that. Having not been born with that particular anatomy, I am not sure how to " aim" it. Something about aim high and let it fly... fly where is my question? Not on me...thanks, but no thanks).

I will try to post, again later today with an update.
Oh, and go UNC- Ali needs a new pair of shoes. ( I am down to 60!) ( If they win, we are in second place and $ comes our way).
Toodles-

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-