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.