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.