Kicked to the Curb

More and more lately, I am being kicked to the curb. Hayden wants to be with Rob. He looks forward to " Fellas' Night". He wants to have Rob do the countdown to get out of the tub race. Rob should read to him at night.
Just last night, they were playing football while watching football and the ball was passed to me. Hayden quickly turned and said, " Mom, we are trying to play a game here." ( Well, excuuuuuuse me.) I am just in the way.
They do just fine without me. I spent the weekend at the beach with the Canal Run girls and didn't hear a peep from them unless I called to check in.
It got me thinking about new and exciting ways to get some " me time". ( Leaving the country?) The more I thought about a whirlwind excursion, the more I also thought about my house and all of he things that would go "wrong" ( yes, wrong is in the eye of the beholder) if I were not there.
I have complied a short list:
1. No food would be purchased from the grocery store.
2. Strange noodle/ hot sauce/ranch dressing pastas would be cooked and consumed.
3. Meds would go undrawn.
4. Beds would never be made.
5. Laundry piles would rival Mt. Everest.
6. The washer would have laundry left in it causing mold to grow and a foul stench to overtake the basement.
7. Cheese would be an acceptable vegetable ( YES, I am calling you out. Plus, what kid likes reduced fat cheddar sticks???).
8. The shower curtain would remain open ( UGH).
9. Bills would go unpaid resulting in no electricity, gas, cable and evetually foreclosure and and a vist from the repo man.
10. All doctor/dental appts. would be missed. If not missed, arrival at such appts. would be so late that the appt. time would have passed and no one will be seen. ( Can we say gingivitis?)
11. Pots would remain on the dish rack, out in the open for all to see.
12. People would eat, food, in the family room ( a HUGE no no).
13. Balls would be thrown in the house.
14. Navy and black would be paired together.
15. Rock Band and Punch Out would take the place of reading and counting.
Basically, they'd turn my home into a Frat house. They'd probably even wear togas ( mostly because the laundry would go undone and sheets would be the only clean item in the house).
Guess I can't plan my getaway any time soon. And they will just have to get used to me being in the way .

Back to the grind

It has been quite a while since I have blogged. Funny thing happened; Summer. I was optimistic that I'd blog more often, but I didn't .I got caught up in being gainfully unemployed. I lounged at the pool, went on dates with Hayden, went to the Lake, hung out with friends, drank a bit, went on vacation and generally lead a life of leisure while still getting paid ( I pay myself for the summer- don't start judging the teachers). It was fabulous. I didn't want to go back to school. I wanted to keep doing laundry in the morning and grocery shopping in the middle of the week, etc.
On a date with Hayden, a few weeks ago, I mentioned that I didn't want to go back and that I'd miss him. He turned to me and said, " Mom, I want to go back to school. ( now patting my shoulder) It'll be OK, we will still see each other at night." So, I was consoled by my 5 year old and realized that I was being hypocritical. Whenever Hayden gets sad because something fun is ending, I am forever reminding him that all good things come to a end. If they didn't, we wouldn't realize that they were good things. I could hear my own voice in my head reminding me that my " good thing" was ending. It was sad, but it was over.
So, we are all back to the grind. I am back at school " teaching the kids to read and write", Hayden is back at school, Rob and Hayden started guitar lessons and we are all doing well.
I do have to say that I miss Hayden. Hayden, however, does not miss me. ( I can't imagine wy. I am un, right?)He told me so just last night. He is having far too much fun in school to even think about me. That is a good thing...I guess.
Rob cheered me up by going car shopping the day before school started. I am lovin' my new ride. AND, after my latop died, Rob went out and bought me a Netbook. Also, lovin' it:-) He is a good man. I am thinking abot keeping him around.

Rob is doing the Annapolis ten miler on Sunday-GO Bertie!!! ( He LOVES when I include him in the blog, just ask him;-)!!!

I'll keep cranking out posts...I have much to say:-)

The Rules are Working Against Me

Rules are good. I like them. They help things go my way, most of the time. No shoes or food in the family room. I have no crumbs or stains. Vacum after a snack. Again, no crumbs. ( What? I like things neat.) Use your manners. I have a pretty polite kid- ask his PICU nurses, he said no thank you or thank you pretty often. Wipe pee off the seat if you drip ( This rule was created for Rob;-). I have a clean toilet every time. Clean up after you use/play with something. Works great, no mess in this house. Ask to be excused from the table. No one gets up and wanders like a nomad during dinner. We eat together, listen to music and have stimulating dinner conversations about "toots" being Butt Gas. Don't get out of bed at night. Hayden stays in his bed and will not get out unless he yells for one of us. Most of the time this is great. No wandering. No mid- slumber visitors. No falling down the steps. BUT, last night it backfired. In your face rules. ( insert sinister laugh here).
Hayden woke up at 4:15 am ( AM!!!!!!) and needed to use the bathroom. No problem. Go to the bathrom and go back to bed. The back to bed part didn't happen. The boy had a case of wicked insomnia. I laid with him. Still awake. We went to my room. Still awake. He snuggled with Rob. Still awake. At 6:30, we all gave up and announced that we were awake. As if we needed to proclaim it was morning.
I have now been up for almost 7.5 hours and it isn't even lunch time. In fact, I am typing this with my eyes closed. They are ready for a nap. My brain left the building hours ago. I think I just consented to buying Hayden a case of beer. He has never even tasted soda. Beer would be wrong. I think. It might make him sleep;-)Ahhh, sleep. ZZZZZZ's. Slumber. Nighty Nights. Nappy. Resting my eyes. Dozing o..

Sights and Sounds of the Pool

The pool is a fascinating place. I see and hear all sorts of things. It is like a sociological experiment. The sights are far more fabulous ( or disturbing, depending on your opinion) than the sounds. Some of the favorite regulars never fail to entertain..
There is Old Bannana- Hammock Swimmer Guy. He comes to the pool for a good work out. A traditional lap swimmer, if you will. But, he wears a Bannana Hammock and a Polo shirt. And looks like he is just wearing a shirt. Did I mention that he also wears running shoes with this ensemble? Thus, he looks like a dirty old flasher as opposed to an excercise enthusiast.
We also have Hairy-Bear Woman. She apparently doesn't know that there are grooming options out there for the overly hairy woman. Waxing? Nair? A razor? All good solid options to remove what she has going on. I'll just say that it starts inside her bathing suit and creeps ALL the way down the back of her legs,causing her to resemble a bear. ( Yes, the hair is brown and well... coming from her nether region.)
Next in our line up, Loud Ill-Mannered Boy. He spends his day referring to his hearing impaired mom as Four Eyes. She doesn't even wear glasses. Ok, she does. But, who talks like that to their mom?
Funky Narcotic Chick has not appeared this summer ( hope she is not dead), but left such an impression last summer that I must include her. You may have guessed, this pill-popping gal pops pills at the pool. She simply shakes them into her mouth, oh 20 or 30 at a time, straight out of the mystery bottle,and takes a sip of water, swishes and swallows. Then the show begins. She can't sit still for more than five seconds and pops up and down on her chair, rolls over, rolls back, plays with hair, twitches, picks her suit out from between her cheeks. Endless entertainment. Come back Funky Narcotic Chick.
There is also a group that I will refer to as the Young, Hormonal, Ready to Mate Crew or YHRMC. The YHRMC just can't help themselves. It isn't their fault. The inate desire to mate is natural, right? They are constantly flirting, flaunting and giggling. The flirting and gigglimg are tolerable. The flaunting is ridiculous. Here are a few tips YHRMC; no one wants to see the rug burn on your hip bones from last night's escapades, your bikini top should cover your breasts and why by the cow if you are giving away the milk for free?
There is also a woman known as Moonpie. I don't want to be too graphic, but she is older, a bit flabby and wears ill-fitting suits. Her top happens to be a bit see through. Underneath is the problem. She has giant " mooonpies" ( no, this is not the correct name for this body part)that stare at you. They ae huge. Unlike anthing I have seen before. And dark. Not a good sight. Ms. Moonpie, you need a new suit .
Then there is Little Boy Who Shakes is Booty. ( aka Hayden) This child listens to the music on his lovely mother's ( that's me) phone and dances. He prefers the Bee Gee's and enjoys jirating and strutting his stuff. He performs my the lounge chairs, both singing and dancing. He must be doing something right, he did pick up a girl yesterday. But is not ready to become a member of the YHRMC:-)
Happy Summer!

So, Who am I?

My identity was stolen. It is not a good thing. I was going to post some advice to all of you, but Rob thinks I should keep my nose out of everyone's business. I don't usually listen to him, but will...for now.
With my identity stolen, I can't help but wonder who I am. Do I get to pick? If I do, then I have a few requests.
Uniqua from the Backyardigan's. She is awesome. And pink. She always gets a snack when she wants one. She is a world traveler. Girlfriend can dance. Plus, the Boinga Song rocks. My lisence could say Uniqua Rae Lazorchak.
Dr. Drew. I could be him. He gets to analze people and tell them what he really thinks of them. ( I sort of do that now). He gets to hang out with has-been rock stars. You can't top that. I have plenty of advice to give out. Wanna know about protecting yourself from idetity theft? Never mind.
Wonder Woman. I have always liked her. That huge gold belt is quite the fashion accessory. And the thigh high gold boots, they are sexy. I had a Wonder Woman sleeping bag and often dreamt of taking on the bad dudes. I could totally do that.
One of those flying monkeys from the Wizard of Oz. They are just plain scary. I could wear a cute little pillbox hat and swoop down and startle people. I would save money; flying as to be cheaper than filling up my SUV. I wouldd get you my pretty ( and your litle dog, too!)
Paula Dean. Now, I don't want her cholesterol or blood pressure, but I'd love to cook like that woman ( sans the butter) and talk with that fine southern draw. Sister gets right in there with her hands and mixes things up. She says what she wants. She drinks cocktails and laughs heartily.
Genie. As in I Dream Of. She supposedly had a master, but didn't obey him at all. Bucked the system. Infact, she did as she pleased, when she pleased. And she had magic powers. They seemed pretty much unlimited. Oh yeah, I could do that.
Or, I could just keep being me, along with the weird guy in Jersey who is also me. Wonder if he wants to take over my houshold duties. That'd be sweet. I mean, dude, if you are gonna be me, you gotta take on some of my responsibilities. Own up to something. I'll still snuggle with Hayden, pop zits on Rob's back ( he doesn't get them often, but I do so love them), water my flowers and veggies and cook. You get the rest. OK? So, put down the game system, quit playing online with pre-teen boys and start being me. Bet ya can't do it.

Age Milestones for All

Hayden turned 5 on Monday; a huge day for him (and us). There are big milestones that come along with turning five. You can chew gum.( My rule) You intend to learn to swim and force yourself to eat icecream ( Hayden's rules for himself). These are big things.
While sitting poolside with my dear friend, Babs, on Hayden's big day, we decided that there weren't enough age milestones. Wouldn't it be fabulous if as we got older, we reached milestones that let us do something new and exciting?
Just think, you turn 31 and get to tell off your annoying neighbors. Why do they think they can " borrow" beer from you anyway?
34. You can get a piercing in a secret place. You pick.
37. You can stop wearing a bra. They are flapjacks anyway, let them flap in the breeze.
39. You can take up drinking, on a nightly basis. A pickled liver is well preserved.
42. No more shaving. Sure, the spouse may find it prickly or bothersome, but it is a rite of passage.
44. You get to start dressing in all one color. " There goes the Purple lady". You'll be known.
47.It becomes appropriate to tell strangers they are dressed inappropriately." Great dress. You could use it two sizes bigger." "Hello, cleavage. You aren't quite 37, put on a bra." " Would you where that to visit your grandmother? Then don't where it to school!"
49. You can fess up to that " incident" from college; judgement -free.
52. This year, you get to start wearing your jammies to work on Friday's. For me, this is retirement year, they won't fire me over it, right?
56. It is a good time to do what you've been putting off. Go ahead, take up break dancing, sport your leg warmers, shake your thang.
59. Force your family to start calling yor by a title. Pick something royal. " Hello, Queen Ali"
60 1/2. Stop dying your hair. See what it really looks like. It is likey no one will notice. ( Right, Mom?:-)
66. Get a pogo stick. You are still young. Use it as a mode of transportation.
71. Tell your daughter in law what you really think of how she decorated her home. Go on...
77. Ride your Rascal around the neighborhood while " walking" your dog and drinking something out of a brown bag. ( OK, Canal Run, I didn't make that one up!)
83. Start speaking really loudly, even if your hearing is in tact. When people respomd by yelling, ask what they are yelling about.
86. Take out your teeth and put them on the dinner table while sipping your coffee.
91. Do whatever you want. You probably won't remembr doing it!

Summer is here

Here is a bit of a general update.
Summer is here and school is out.
We have so many fun things planned, Father's Day and June B-day celebrations with both sides of the family, Hayden's 5th Birthday, the 4th annual Haydens Heart Heroes Golf Tournament ( haydensheartheroes.com), Hayden's B-day weekend trip and Hayden throwing out the first pitch at the Frederick Key's game on 6/30( co0,me on out to see it- tix at the gate- just ket me know if you are coming)! That is all in the next two weeks!
We will be busy getting ready for the tournament during the next week and are excited to have so many golfers coming out.
We are all really enjoying each other, fun outings and time with our friends and some family.
Rob is back to training. I am back to writing, cookimg and relaxing. Hayden is, well, back to being Hayden:-)

We ask that you send a prayer or two to our new friends in the UK, Sarah, Simon and Cerys Durkin. Cerys is three weeks olds and is also a Hypoplast. She is still in the hospital and causing her Mom and Dad a good deal of stress. We think about them often and hope that they get to take Cerys home soon.

Sentenced to Stupidity

Now, I know that not everyone can be as quick and witty as I am. I mean I do teach some pretty low-level kids, strugglimg readers, disengaged learners. I get them. I don't get stupid adults. You think I'd see the correlation between the teenager who lacks skills and the adult morons roaming freely about the world, but I don't. I have no patience for those who have been sentenced to a life of stupidity. It just aggrevates me.
My biggest aggrevation caused by these people has been a long time coming. Those of you who live in the POR know that we have heard about the traffic circle for years. It has finally come to fruition and is almost as bad as I thought it would be. Surprisingly,some people know what to do in the traffic circle. Yield in, drive, circle out. My first few times through I was shocked. They did OK. But then it happened, I was circling around to get out and some yahoo failed to yield into the circle and almost sent me flying across the highway. Fabulous. Since then, it has happened endless times. Is the circle that difficult? I say no. The drivers are that stupid.
The stupidity follows me. I know it does. Questions like, " Aren't you guys glad to be home from the hospital?" " Are you happy school is over?" " Don't you get bored in the summer?" all remind me of that the the stupid are everywhere. They don't keep to themselves. Often they are loud, think they know things, but arestupid. Shouting and hooting misinformation all about. Hush I say. Keep it to yourself.
Sometimes, I feel like the stupid are asking trick questions. "Should I take the 20% off your entire purchase or just one item?" Umm, if I say the entire purchase will I get arrested? I am inclined to say entire purchase. Am, I missing something? No? What? You are just sentenced to stupidity? I see.
Some days, I firmly believe they were put on this earth to test me. See how far they can go before I lose it. But, I won't give in. The stupid can't take me down.
To quote one of my favorite poets, "If the world get's in my way, I say " Have a nice Day". Ok, that is a BonJovi quote, but you get my point.

An Update

Just a quick update. Rob did an AMAZING job in his triathlon! WE are really proud of him. Yes, he did manage to beat most of the elderly. There were a few that were in phenomenal shape and obviously do not have a propensity for beer and tequila; they managed to beat him. He only had a few weeks to train hard-core due to H's hospitalization and really pulled it off. I think he is now addicted and searching for more to do. He was contemplating one that is ten days away , but double the length of the last one. Fortunately, registration was closed. He is also looking at some duals ( just bike/run), although I insist on calling them bi's. I like it. It has a ring to it. " Rob is training to be a bi champion". So many comments, must stop self... can't stop.
Hayden is a ROCK STAR. He is amazing. His strength and stamina are incredible. I, however, could use a long nap. He has been getting blood work every two weeks to check his INR (coumadin level) and goes in like a champ. He gets teary for a minute when they draw his blood, but is more upset over the gauze and tape they put on his arm. He attended his school picnic yesterday and enjoyed seeing his teachers and friends, riding a pony and hanging out. He has taken to having a dance party every night after dinner. ( We listen to music at dinner. Typical dinner musuc; 80's pop, gangsta rap, old schol hip hop, classic rock, hair metal, rock, etc) His fondness for Salt N Pepa and TLC must be hereditary. And he can shake his thang, yay, yay. He truly enjoyed seeeing Isabella at the beach this weekend. He missed his \" girlfriend". Although, we do need to talk about appropriateness. She was lying down with her butt up and he walked by, slapped her butt and said " Look at that tushy up in the air". Oh, my. Too much EU and Salt N Pepa??? Sexual harassment at almost 5 years old. Maybe his father should talk to him. Maybe not.

Will blog again later. I have a wonderful tale of stupid people and stupid ideas.

The Wonderfully Fit Elderly

Rob has been training for his first triathalon ( So has Chris, apparently because I called him out ,on this very blog, for buying a pricey bike and not using it. So what if he already has a wife to nag him. She is my friend, I am supporting her!). It is coming up this weekend. He is pumped and excited. Really, his goal is just to finish. Not interesting in winning. Doesn't want to beat anyone. A goal for himself. I find this quite admirable. Or I did until a few minutes ago.
I was just told that there are 250 racers; not a huge race. Next, I was told that there are two 70 year old racers and several in their late 60's. Now, Rob is out to win. Or at least beat the elderly. I reminded him that there are some very fit and active athletes in their 70's ( none are related to us) and that beating them might be unrealistic. Nope. He claims that a loss to an AARP member( particularlly female Don't get me started on this...) would bring great shame upon our family.
His next proclaimation is the most startling. " If I lose to an old person, I am never working out again."
Awesome. I can see it now. Rob on the couch wearing one of those beer can hats, too lazy to replace the cans himself. Yelling to Hayden to fetch " Big Daddy" another beer. Just sitting around in his " comfies" or undies, scratching himself and talking about the old days when he used to run, bike, swim, bathe, move, leave the cuch.
With that terrifying image in mind, I am making a plea to the wonderfully fit elderly. Please,don't show off your years of dedication and training. Hold back, just a bit. Let a young whipper snapper pass you. Feign being winded and tuckered out. Basically, make my husband feel like a tough guy for taking out a few members of the geriatric set. You wouldn't want him to take to the couch or worse yet,competitive eating.
I am sure Rob ( and Chris and maybe Bush) will do an amazing job this weekend and I am so proud of him for taking on this new challenge. He is a great role model for Hayd, who is really pumped to watch his Dad race. Rob, just get out there and do your best and don't compare yourself to anyone else, especially the elderly.They atre a feisty bunch.

A Prisoner Set Free

I am not sure if that best describes Hayden or me. Both of us have been a bit batty from the self imposed house arrest. It began ten days prior to his surgery. Way back in March. We decided to avoid all germs; therefore public places and Hayden's school ( sorry Beth Sholom, we love you, but you are germy;-)were out of the question. We began to "enjoy" the life of those who have committed white collar crimes and are allowed to glimpse at the real world through their windows or front porches, but not actually participate. Having not actually committed any crime (not one we are confessing to at this time), we are free to well, be free at any time of our choosing.
This past week, we chose. I am not sure if it was Hayden stating that being home so much made him sad or me threatening to invite Robert W., the inept fridge technician, over to hang out ands drink the afternoons away (since he now has so much free time) that actually pushed us out the door. It may have been Rob's hands. Whatever it was, we reappeared in society. And liked it.
Our outings have been simple. Grocery store. Cardiology check up. Blood work. Dinner. Baseball game. 9 holes of golf. The pool. What hasn't been simple is the reaction we get from everyone. Most people comment on how great and normal Hayden looks. ( Yay!) I kind of expected that. What I didn't expect was people telling me I look good. ( Now, don't get excited. I really look the same...you decide if that is good or bad.) For some reason, people actually expect me to look like an ex-prisoner. Thus, my clean, well- manicured appearance shocks them into thinking I look fabulous. While, I do pride myself on things like bathing, wearing clean clothes, brushing my teeth and styling my hair, I have not put forth much (or any) effort regarding my asthetics since reappearing in the real world. I do wonder what I am supposed to look like. Haggard? Fried,dried gray hair? Sagging skin? Pruned up wrinkles? Excessive weight loss? Gain? Yellow teeth and nails? Dazed?
In any case, this house arrest has apparently been great for my appearance. That or people haven't seen me for so long that they just forgot what I look like.
I return to work tomorrow and fully expect to have gushing compliments on how gorgeous I look ;-) I'll need that considering Hayden can't wait to see me go so he can get back to his " regular days". Does that make me irregular? That's a topic for another post.

Exhausting

I find many things exhausting.
Right now, dealing with my fridge situation has become exhausting. After a weekend of running in and out of the garage every two minutes while trying to entertain ( sat.) and cook/bake ( Sunday), I gave up. I announced that I was not cooking again until I had a functional fridge in my kitchen. I do love to cook, but started to get annoyed and sweaty from having to go out to the garage constantly. Rob returned from a bike ride to " I am not cooking anymore. This is too hard. ( pout)"! He said " Ok, we'll just get take out." ( Wow, that was easy).
Ultimately, Robert The Inept destroyed my wonderful fridge. I find inept preople exhausting. Rodney The Talented Tech and Russle The Super Supervisor declared her dead. Yes, DEAD! I was issued paperwork to pick out a new one. ( I fought THE MAN and won my fridge!!). I did select a new fridge, but even that was exhausting. Had to add money and buy a new service plan. BUT the exhausting part is that they do not intend to deliver it until...MAY 27th!!! UGH. Nope. Not gonna work. I am now dealing with Dennis the Dogooder ( his name may change if this doesn't work). He is attempting to get a seperate truck to deliver my fridge, ASAP. I will call him shortly.
I am also exhausted by the company that distributes the INR home testing machine that Hayden needs so he can avoid going to the lab for blood work. They " lost" my fax three times. I finally connected with Caring Connie who let me fax it directly to her and is getting it processed. It could stil take 4-6 weeks. Exhausting.
My furniture, ordr on 2/15, is still not in. They are waiting on one piece and CLAIM it will be in by the end of this week. I cannot count how many phone calls have been made to them. I am getting a gift certificate to buy some lamps. ( That sort of thing happens if you complain enough). For now, I will enjoy pretending I am in a Japanese restaurant and just relax while sitting on the cushions on the floor in my family room. Exhausting.
Lastly, I am exhausted by being home so much. I am not a sit-stiller. I am a mover, goer, shopper, errand runner, etc. I love being with Hayden and doing things together, but staying home so much is making my batty. I hated my maternity leave for the sme reason. ( that ad the fact that I hate babies)He and I usually are out and about, but we have been keeping him home to recover and to stay away from germs. He is getting much stronger and is able to do more. We are going to start lettimg him make public appearancs this week.He should be just about back to himself in time for me to return to work next week. That will also be exhausting.

Luck

Someone recently mentioned that I seem to have less than perfect luck. Hmmm. Really? I hadn't noticed. Bad, luck? Me? Now, I could go deep and philisophical here and point out that adversity makes us stronger, better people. Or that you aren't given more than you can handle. But, today, I just can't take the high road.
Something bad has happened and I can't rationalize it. My baby, my sweet beatiful, perfect fridge is malfunctioning. She was the result of a kitchen remodel three years ago. It took much time and research for us to decide that she was the right fridge for us. Ultimately, her stainess steel exterior, bottom mount freezer, french doors and interior filtered water dispenser ( so little or big germy hands can't touch it)won our hearts. We embraced her into our appliance family. She has become an integral part of our lives. Unfortunately, she isn't doing well. Her digital temperature display went nutso an few days ago. It was blinky at times; non-existent at others. And then it happened; she stopped holding her temperature. Much like a menopausal woman. Her erratic behavior prompted a service call. Again, like a menopausal woman. The technician ( I'll get to HIM in a moment) delivered the news that she needed a part. It would be overnighted. He would return on Friday.
Now, the technician, Robert W, wasn't exactly familiar with my preciuos baby. He peeked around and couldn't figure out what was wrong. He called the manufacturer and they gave him some much needed assistance. He thought he figured it out and ordered the part. Homestly, I wasn't impressed. He moved pretty slow. He lacked information. After he left, she really went haywire. He did not help matters. The fridge was 56 degrees and the freezer 30. It was not good. Thankfully, we kept old Bessy ( our old fridge) in the garage. She usually contains liquid joy, but had plenty of room for our food. I couldn't believe that this boob botched up my precious love. This is who " luck" sent to save my baby!
My inept technician told me to call him as soon as the part arrived and we'd set up our repair. I did as instructed and was met by ," I ordered a part?" ( SHIT!!!- That is me screaming in my head). I calmly responded by recapping our events from Wednesday morning and he seemed to maybe recall my sweet baby and her dilemna. Or he was acting. He is supposed to come tomorrow morning. I am not sure if I'll be more surprised if he shows up or if he is capable of repairing her. My luck tells me...well nevermind.
A spot of good luck has come my way. Hayden is getting stronger and more agile each day. He can now get up onto the sofa himself. Sit down on the floor. Get up from the floor. And get into downward dog ( yes, yoga is part of my home rehab program) Tomorrow we are going to focus on steps and jumping. He is working really hard and just smiles really big each time he accomplishes something. I scream really loud as if being chased by a man with a bloody knife. Hayden liks this scream and joins in. ( I never claimed we were normal).
In the end, my fridge will get fixed or replaced. That is the beauty of a service plan;luck or no luck. And, I get to scream at the top of my lungs and giggle with the happiest, toughest guy I know. Yeah,I am lucky.Sort of.

The Biggest Gainer

I realize that my last post wasn't exactly about Hayden, but it was advice he could use...one day.
Last night Hayden reached a post-operative milestone. I'll explain.
In our house, we are playing a game called " The Biggest Gainer". It is similar , in theory, to the popular " reality" show, the Biggest Loser. ( aka the BIG Fatties, as they are referred to by my dear friend ,who will remain anonymous, lest she be judged for criticizing the morbidly obese). Our game is a bit different. The goal is to gain weight, not lose it. ( Hayden, not Rob and I) The week is difficult; trying to suck down breakfast, 2 snacks, lunch, 2-3 snacks, dinner and dessert. It is a challenge that few could meet. ( Althought, those on cruise ship vacations usually do quite well with this challenge)In our home version, Hayden gets on the scale each Monday evening, naked. (We are skipping the team colored sports bra and matching shorts; it is the home version.) As the numbers come up on the scale, we hold our breath, hoping for significant weight gain. ( Fade to commercial for dramtic effect. I sing somethimg catchy.).
Last night was a real cliff hanger, would Hayden, who was down 10% of his body weight, reach the goal of his pre-op weight? Would he gain any weight? Oh, the drama of it all.
Fade back in and focus on the scale. Numbers spinning. Next, a shot of our faces, agonizing over the numbers. And, finally, the weekly weight appears. Did he gain?? YES! Hayden is back to his pre-op weight. Skinny, but not skinnier.
This was not a season finale. The game continues next week. Who knows, he might reach 30lbs by the time he turns 5 in 5 weeks!

Aside from gaining weight, he is also gaining stregnth and stamina. He has a sparkle in his eye and is back to being a chatty guy.( He is yelling " Come, on!" to the imaginary Terps basketball team that plays on the imaginary court in our kitchen.)He is also sleeping, peacefully, at night.

Maternal Wisdom for All Ages

I know some things about some things and thought I'd take today to bestow my maternal wisdom upon you.
1. When wearing a white shirt and ordering an ice cream cone, know that said cone will leak upon your white shirt.
2. If you try something new at your favorie restaurant, you will regret it and wish you ordered your " old favorite".
3. Use your manners; no one resprects the rude.
4. When packing for a weekend trip, double check to make sure you have underwear. (and you should probably pack at least 4 pairs of shoes, just in case)
5. If a fire erupts on your deck, say from your gas grill, there is no shame in immediately calling 911 and also yelling that the chicken is ruined.
6. It is OK to pass the sunscreen over to those who aren't slathering themsleves. Those of the older generations, you know, the ones who Aqua Netted the giant hole in the ozone, may need a gentle reminder to put down the baby oil ( or Crisco) and use some SPF.
7. That old saying about liquor before beer; meaningless. Enough of both or either and you'll be sad. So sad.
8.Some people are huge disappointments (they will probably be related to you). Forget about them and cherish those who are good to you; they matter most.
9. If you put on a few pounds, don't proclaim that you will take them off before buying any new clothing. No one wants you to look like a sausage in your clothes,it s just gross. Buy a few key pieces and either take off the weight or embrace the new, softer, you.
10.If someone in your life adds artificial sweetener to their wine feel free to admonish them. ( do the same if they refridgerate the Cabernet)
11.If so inclined, strike up a conversation with strangers. It may embarass those with you, but they'll get used to it.
12.When frustrated, don't give up without throwing something down or growlig in frustration.
13. When your nail polish brand "goes green" and all of the colors fade when exposed to any bit of sun; write a letter of complaint. How dare they put the environment before your beauty! AND who wants to pay for a pedicure that fades after a day poolside?
14. Always ask for a discount or lower rate. You'll probably get it. Most people dont ask.
15. Haggle with your insurance company over EVERYTHING. It might take work, but they count on you lettimg mistakes slide. Most people are too lazy to fight "the man".
16. Always be yourself. Someone is bound to like you, I think.
17. Be good to your Mom. She might be a loon, but no one loves you the way she does.

A Testosterone World

My reality is that I am just a small bit of Etrogen in a Testosterone world. Rob, Hayden, even Shiny Tale; all males. When they get together, they get a pack mentality. Sort of like wolves or wild dogs. This pack mentality targets the closest bit of Estrogen, me.
The other night I called home to remind( not nag) the boys to feed the fish. The call went something like this:
Rob: Yeah.
Me: Don't forget to feed the fish.
Rob: Really? That is why you are calling?
Me: Yes. I don't want you to forget.
Rob: Like we would forget? Good-bye.
Now, Rob does not take care of the fish. Never changed the water. He has probably fed him five times. My reminder call did not deserve what came next. My phone rang and the following conversation occured:
Me: Hello?
Hayden: Mom, don't forget you're my Mom.
Me: WHAT?
Hayden: You thought we'd forget to feed the fish, so we thought you'd forget you were my Mom. ( Naturally, this call was on speaker phone so Rob could listen in, Jackasses). IF I was going to " forget" I was his Mom, don't you think I would have done that weeks ago and run off to the Carribean? Forgotten my worries? But, no, I stayed around; only to face more from " the pack".
Often, I am told to go out; it is fellas night. And Hayden frequently says, " Mom, you are such a girl". I was told, just this morning, that Hayden and Dad have a morning routine and I am dissrupting it.But, sometimes being the only girl pays off. I was given a beautiful tiara to wear when I cook.It twinkles. I like things that shine.And last night, during Shabbos dinner, Hayden and I were chatting about genders. He told me he knew I was a girl because of my hair, and these (hand reaches and grabs my right boob, proceeds to squeeze!!!), my fingernails and pink toes. Fair enough. I do have all of those. I don't encourage the boob squeezing, but was flattered that he noticed without a magnifying glass. He is an observant member of " the pack".That bodes well for him.

 

Hayden baseball

 

Hairy, Scary

The three of us are hairy. Really, we are. Head hair. I don't have crazy arm hair or anything. Haven't undergone electrolysis. The boys have a bit more body hair than I do.( that is a lot of information) With that said, the boys get hair cuts every four weeks. They have gone since March 20th and are hairy ,scary dudes. Rob asked Davina, their fabulous stylist, to make a house call. So, this morning, on our deck, ala Beverly Hillbily's, the boys got hair cuts. Puffs of blonde and stawberry blonde hair flew about. They look very handsome ( although, as I type this and gaze over lovingy at Hayden, he has a huge orange Dorito ring around his mouth).While the boys were getting haircuts, I was dealing with a nurse at Hopkins and a lab here in Fredrick,IM'ing with Dayna, the carpet guys were cleaning the basement carpet and Pop arrived for a visit with Hayden. So, not only were the boys hairy, scary, but so was our morning.
Our afternoon has proved to be far more calm. While the rain stopped, terporarily, we disembarked our ark and went outside. A little bubble blowing on the front porch. A spin on our " bike" ( we are using the " little kid" bike so Hayden can get pushed, but still go through the motion of pedalling; that way it isn't too strenuous for him). A little Noggin. A snack. While the sun was shining I was reallying feeling a cocktail coming on. There is nothing wrong with mid-day cocktails? Right? At least I am at home; some of you do it at work. Alas, the sun has gone and so has my momentum to reunite with my long lost friend, vodka.
Hayden got a fabulous gift yesterday. A Terps basketball signed by Gary Williams. ( Hold your coments if you are on the fire Gary bandwagon) Thanks, Jay - that was so thoughtful of you. Hayden ( and Rob) are so excited. We are going to get a display case for it.
Hayden is doing well. We see him get stronger each day. He is eatig like a maniac. My middle of the night wake-up call wasn't until 3am and didn't last more than 30 min. An improvement. We are hoping for a nice restful weekend of just enjoying our time together, at home. And maybe some vodka. Rob intends to kick up his training; he is completng his first triathalon at the end of the month. ( still skipping the swim- re; earlier posts- for fear of drowning).Now that his hair is cut, he will have excellent aerodynamics.

The first outing

It was to the pediatrician and for blood work, but it was an outing.Hayden had a quick check up with our pediatrician this morning ( she is awesome!) and then went for some blood work. Blood work was not that quick. Getting our info. updated in their computer sytem took forever. I was tempted to turn the computer around and do it myself. I mean really, how hard is it? Once we were entered,it didn't take long at all. They even got H's blood on the first stick and we were off.
We treated H to McDonald's for lunch.I ate bruschetta for lunch and now have rockin' garlic breath. I am chewing gum, but can still smell myself.( Gross, I know Perhaps I should have just gotten a Filet O' Fish.( more gross. What kindd if fish is that anyway?)
Hayden is improving each day. He is still weak, but we are seeing great progress. He is trying really hard. We have some brownies in the oven right now because he really wanted to cook. Perhaps, next, he'll really want to do laundry or clean! I am groomimg a fine husband for some lucky lady.
Sleep is still our problem. It is improving, but not great.Hayden was up twice last night- 1 hour the first time and 45 min. or so the second time. The first time he was not upset, the second time he was. We are hoping that each night gets better. This is much like havig a baby and as some of you know, I hate babies. No, really, I do. Go ahead, judge me, it is OK. I am really not a nurturing person. I am not even that nice.
We are waiting for a visit from Grandma and Pop-Pop. Hayden is excited to see them, Tomorrow Pop is coming for a visit. I anticipate mch giggling. Hayden will have fun, too;-)
Many of you have asked about visiting .We are trying to keep things calm right now. Plus, we are being completely germaphobic- no kids, etc. I know how much some of you want to see H, just give us a bit more time. We hope to back to " normal" soon.
I am hoping to get out to buy the G'mas Mother's Day gifts. Hallmark holiday fun.
I am so bad at staying home...
Rob is wonderful. I am not just sayimg that to make up for callig him a tone deaf narcoleptic.( Well, I am. But, he really is wonderful!!!)

A day at home

We have had a great day at home. It was busy; carpet water damage dudes, cleaning lady, Costco and Giant run ( this was not good for my back). Hayden has been eating like a champ and really enjoying being home. Watching TV, playing Wii and just hanging out. He is really trying to get his groove back.
Rob keeps nodding off in the middle of activities. He may had sudden onset narcolepsy ( not necrophilia, Cathy). We might have to look into this
I am in the midst of makig dinner. Quesadillas and rice. Ole.
The boys are playing Wii Boogie- a singing game. They are currently singing "YMCA"- aaah The Village People.. . Rob singing " young men, young, men".They just finished " King Fu Fighting". I had never realizd how racist that song is.Holy cow. It is ridiculous. I think I was usually ejoying a cocktail when I listened to it.
Ok. Off to eat dinnr, or fall asleep in in. Hoping for some ret tonight.
Loving the sound of the boys singimng. Well, of Hayden singing. Rob is a tone deaf narcoleptic.

There's No Place Like Home

No, I am not in the middle of a disturbing Wizard of Oz dream with those terrifying monkeys. We are HOME! At our house!
Yesterday, during rounds, Hayden's doctors decided that he could go home. It was a bit unexpected, but we were thrilled! I called Rob and told him to pack up and get down there. We had to get prescriptions filled and wait on lab results and paperwork, but were out of there by 3.
Gramasarous and Pop and Grammie Lynn and Papou were there to see us off. Grammie and Papou met us at home to help us move some furniture back into the family room
( our new furniture is on back order). Papou was a huge help in helping Rob carry everything into the house.
I attempted to unpack and the boys played Wii:-) We are stilling getting everything in it's place and I just finished drawing Hayden's meds.
We were all exhausted last night. Hayden got a REAL bath! Hayden slept about 5 or so hours on and off last night. He hasn't slept a full night in 5 weeks. It'll take some time for him to get back to that. Sooooooo, it was a long night.
We came home to a freshly wet basement. The drain by our sliding glass door was clogged with grass clippings and yesterday's rain came flowing in to the basement. ( great fun). The carpet company is comig this morning to deal with that nonsense. It isn't very bad- just abut a 5x7 area by the walk out. UGH.
We have no food in the house, so I will head out to the grocery store, soon. Can't wait to cook something!!!!!
Hayden still has a good deal of recovering to do. He is working really hard, but is weak. We can already see a difference in him since he got home. He cant do steps, needs assistance getting up from a prone position, isnt running or jumping, but is get more steady on his feet. And he is laughing. His emotions ae running high, but that is getting better. He has a doctors appt. on Thurs, and will also get blood drawn. Hayden will be on Coumadin for an indefinite priod of time and will need to get that blood level checked fairly often over the next month. (He will also have a few doctors appts.) After that, the bloodd draws should be monthly. We have also ordred a home test machine ( similar to the diabetes machine), but that will take some time to get- insurance is SLOW. I am trying to just purchase it and not go through insurance- that might speed up the process.
Off to finish taking care of " stuff". And hanging with H:-)
Will post again later.

Day 35; Broke Routine

So I broke routine and went in a 6:30 this morning. I didn't post. Apparently, this freaked most of you out. Sorry. We are adjusting to the routine of being on the floor.
Hayden is doing great. He has no more IV meds., is off " the juice" and off of oxygen. This means he can get out of bed an do as he pleases. We spent a good part of today taking walks and going on wagon rides. he is still very weak, but is workimg hard to get stronger. He is amazing. We surprised Rob by greeting him at the elavator when he arrived this evening. After dinner, we took Hayden on a wagon ride to the cafeteria. He purchased a bag of Skittles ( yuck). We returned to his room, washed him up and he got to put on real pajamas. He told me that he woykd be wearing regular clothes tomorrow.
Hayden is down 5 or 6 pounds. If you know him, you that mens he is a scrawny little chicken. We are trying to bulk him back up to his prize fighting weight of 29 lbs;-)
We got a new room today. Our previous roomate's mother is, ummmmm, unusual. She screams all day at the nurses and doctors. They decided that no one should share room with them. We moved right next door. It is nice to be alome and enjoy some peace, quiet and privacy.
Smurfs, Canal Run Girls and Curly Girl- hope the marathon went well. Sorry about the rain. Trac- thanks for taking my spot; hope you survived. I owe you a night of cocktails!
Hopkins is randomly testing for Swine Flu. I assume this is a nasal swipe and not a body cavity check.Think I'll wear cute undies tomorrow just in case.

Day 34; Floored

When I arrivd in Hayden's pICU room yesterday, I ws promptly told that we would need to move out of our nice, quiet room for two imto one of the " big rooms". The big room are for the mos6t critial kids, freh post ops., ECMO, etc. There were a number of kids coming in that needed to be on isolation ( due to highly contagious illnesses)and they would need Hayden's room. So, we qyicly packed up and moved. Hayden was g. Not only did he want to stay put, but the new room had some VERY sick kids and there was a lot going on. More than alert,perceptive almost 5 year old should see. He did settle down. We were not gng to be able to do PT in that room, but I was not allowng that. We had Hayden walk out into the hall where we set up ppaper amd paints. He not only walked out there, but stood for 35 mnutes painting, finger painting and drawing. Then, he walked back. Shortly thereafter, H got an ech. It looked good and cardiology told us that they were sending us to he FLOOR! They wanteed us out of that setting and moving on. So, yesterday at 3:30pm, Hayden left the PICU and moved to the regular floor.
His new room is a double, he has his OWN TV, a closet ( our junk was all over the room in PICU), a night stand, a pull out chair for us to sleep on, AND A BATHROOM. Hayden was sooooooooooooooooo excited about the bathroom, We weren't there 30 min. before he announced that he woud like to use it to poop. He had humored us with the " hospital pants" thing, but was thrilled to see a toilet ( there are none in PICU). He will still use a urinal to urinate, until his IV is discnnected), but he is getting up for bowel movements.
We do not have to leave from 7-8 am or pm on the floor and can eat in the room. So, Grammy and I ate shabbat dinner with Hayden last night. It was wonderful to here that sweet voice singing. His personality brightened as soon as we got to the floor. He used the phone to call Grammy and tell her to come down and to call Betsy for a chat. I even shared his bed with himn while we looked in his talking view finder. ( We got in a good snuggle, too!)
Our roomate is from Israel, only speaks Hebrew and is orthodox. She yells at the doctors and nurses constantly and is a bit of a problem. She refuses to let them draw blood, take temp., examine. We got " shushed" last night. But, we will roll with it.
Hayden's current task is to keep getting stronger.

Day 33; Gettin' of da juice

Hayden is now on the lowest dose of pain medicine that can run on his pump. He is on it due to withdrawal, not pain. We have been able to make a lot of weens to get to this point. It is very exciting. He is experiencing some mild withdrawal symptoms (gagging, loose stool, wide awake most of the night), so we will not be able to ween him off the juice today. We will likely leave him at this dose for 2-3 days before turning it off. Dr. Drew really needs to pay him a visit and analzye the root of his addiction. Does it stem from his childhood? His mother? Will he turn to stripping to seek attention?
Aside from some withdrawal,Hayden had a good day yesterday. They turned off his Milrinone ( The IV med. that was running to help with cadiac function- the one that they only use in PICU) and increased his oral dose of a similar med. We are playing the wait and see game, but hoping it contines to go well. All of his meds. are now oral except for his pain med. YAY!!!!!
No PT yesterday. She was off for the day. Someone else was supposed to come, but they didn't.( No surprise, but quite annoying) I got Hayden up and out and walking. He is getting so much stronger. It is fabulous. I am hoping they come today, if not, we won't see them until next week and I'll have to ramp up my "coach Mom" act.I don't mind doing it, but am pretty sure Hayden gave me an eye roll yesterday. ( In my head I thought, " Don't roll those eyes at me. I gave you those I eyes, I can take them away", but that sounded odd, so I said something encouraging and nurturing instead).
It sounds like Rob and Hayden had a looooooooong night. Hayden was wide awake ( back to the withdrawal) for most of the night. He was pleaant, but awake. This will throw him off today, but that's how it goes.
H enjoyed his late afternoon company of Pop, Grammy amd Grandma.Granparents, popsicles, books and view finders can't be all bad, right?
My back has gone piny, pingy, pop and I am fearful that I may not be able to move later today. I know I did it getting H out of bed yesterday.I fet it happen. Big fun. I could use a massage;-)(a facial and pedicure wouldn't suck, either)
The progress has been slow, but we are pleased wih any progress and hope it continues.
Off to straighten myself up( I feel like a 90 year old) and drive downtown.

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-

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:-)