Were Witty: February 2010

Forgive Me

I need to beg your forgiveness. I have the most precious photos of Kate, Adam and Baby Ryan playing today and I forgot the SD (digital photo card) in the netbook that is with Scott at the hospital.
How could I have done such a stupid thing? Where was my head? Why wasn't I thinking about all of you waiting to see photos of three of the cutest kids in the world? I'm a slug.

In my defense I took the SD card out and put it in the netbook so I could download the most recent photos of Scott leg. You see, while changing Scott's dressing this afternoon I noticed that he now has exposed achilles tendon on his left leg. The black junk has eaten away so much that it's exposed the tendon.
Yeah kids, super FUN. It's not a huge spot probably just under an inch in length.

So I hope you all can forgive me, I was slightly distracted. I've never seen live tendon before (it's pretty cool).

Other than the little tendon problem, today was a pretty good day.

Kate and I went to Target and Starbucks early. Came back and made chocolate malt cupcakes with cherry vanilla frosting - Hello Delicious
Dan D. came over to start the ramp for the front door so Scott can get in the house. Alli brought Adam and baby Ryan over for a lunch play date. The kids had a blast, it's like they just saw each other yesterday and not 4months ago. Kate LOVED Ryan. She was very gentle and caring.
My parents came over at naptime so I could head to the hospital. Obviously, I'm glad I went.

Scott had a good day all things considered. Bonnie came for her Sunday visit. Sorry I missed you Bon. Have a safe trip.
Scott has made friends with another patient that has better mobility than Scott so they've been hanging out at nights. When I left Scott was sitting in his wheelchair in the community room on his floor waiting for dinner and watching the USA Canada hockey game (glad I missed the disappointing ending).
Kate is enjoying her milk and watching Dora. "Swipper no swipping". Milk is almost finished which means it's time for another round of chase before Kate settles in for bed.

I'm interested to see what all the doctors will say tomorrow. You know I'll give you a full report along with those sweet, sweet photos.

Good Days

So we've managed to string together 2 very good days.

Friday - Kate and I came down in the morning. Having Kate around for PT and OT was equal parts fantastic and ulcer causing. Trying to keep a crazy, wild dancin'
(you've seen this video http://www.youtube.com/watch?v=xbvG25tNYDc),
sassy, spunky, toddler contained in a gigantic gym with balls, mats, and even a Ford Festiva is virtually impossible. But we managed it and we had a blast doing so.
Scott rocked it during PT and was taking some great strides without having someone move his left foot for him.
This kids is a HUGE, GIGANTIC, totally ENORMOUS improvement. It means it only takes one person to be with Scott while he's walking. He's not going far but it's improving.
Kate went home around lunchtime and Scott rested gearing up for round 2 of PT and OT.
The afternoon OT brought a new favorite person into our lives. Her name is Rachel and she's a custom wheelchair specialist. She started the process of getting Scott the most bad ass custom wheelchair this side of the Mississippi. Thank you Carole for bring Rachel to us. She's exactly what we needed.
And then the evening... well you all saw the spread...delightful, spectacular sushi night with some of the best people I know.
I know I promised more pictures but I'm having Photoshop difficulties that I don't feel like conquering so you'll just have to wait.
Yeah, I'm lazy like that, what of it?!?

A few hours sleep and Kate and I were back down visiting Scotty. We had a great time together. K helped me with changing the dressing on Scott's thigh incision and did a great job. She only handed me the tape but she listened, followed directions and most importantly didn't freak out.
I really wanted to expose her to some of Scott's "ouchies" before he comes home. It's going to be a big enough adjustment to having him and his wheelchair here that I didn't want her frightened by the bandages and such.
I predict she'll be a doctor in the future. She came over, looked at it, told me to put a bandaid on it and basically walked away, leaving me to finish the job. If that doesn't say doctor I don't know what does.

We took a family walk over to ABP for "lunch". I helped Scott get in and out of bed doing a stand - pivot transfer; meaning I helped him get up and standing (with his walker) and he pivots over to the wheelchair and sits down. Previously he's been using a board to slide from the bed to the wheelchair; never standing up.
Getting upright to move is yet another HUGE, GIGANTIC, totally ENORMOUS improvement. To be completely honest I didn't think he would be doing these types of transfers before being discharged. He did 4 of them in total and I needed to give him only small amounts of assistance.

Can I get a "HELL YEAH!"?

Kate went home with the Grandparents and Auntie Blue and Uncle Justin after lunch so she could nap and I came home mid afternoon.
Kate and I had a great afternoon and evening together. Not a single temper tantrum, no timeouts (for either of us) and she played independently through part of it so I could do things like the dishes and laundry.

All in all kids, this is as KICK ASS as it gets around the Witt family lately. I'm enjoying every single second of it because we know that it can all go away in the blink of an eye.

Holding some pretty high hopes for Sunday. Crossing all my fingers and toes that Kate and I get to see Alli, Adam and Ryan (oh and Dan too - although Dan will be building a ramp at the front door so I don't think he'll play much. Sorry Dan. We love you Dan. Thank you bunches Dan.). Kate and Adam haven't had a playdate since before the holidays. You know your almost 3year old is missing her friend when she cries in the car telling you
"But Mama, Adam nice boy. He no hit me and I share my dolls wif him". I can guarantee she won't want to share her dolls tomorrow but we'll cross that bridge when we get to it.

Now if you'll excuse me, Armageddon is on and I must watch it for the 1,243,567th time.

Live Feed

Another night of fantastic sushi.

Lots and lots of sushi...

And this is how it ended....

Enjoying the evening with some good friends after a great productive day.
More photos tomorrow.

Sorry you missed it RRR.

Peace, Love and a WINNER

This a horrible self portrait but here I am. Thought I should memorialize the moment where I found sanity again.

So wonderful, so peaceful, so silent. No cell service, no cars, no hospital.
I literally climbed the hill of death in 2.5feet of snow to get to the top. So rewarding.

Speaking of rewards..... drum roll please Katie

The winner is ...
Sara - the celebration- he either made a phone call (looks like a phone in his hand) or he put on his own shoes. or maybe they are just celebrating hump day
Technically he took off the shoe but we'll count it.

Taking off the shoe probably took 10 minutes and it required lots of "stuff" but it'll only get better from here.

Thanks to all of you again for the kind words of support. Once again you wrapped me in a gigantic blanket of love. I felt big and fluff and squishy, or maybe that's just my ass.
I predict my big fluff ass and I will be perfect tomorrow when I take K to see Scott and get that first bite of Kathy's famous banana bread. The bread is for the ass, the Scott and K are for my soul.

Still lots to do before this day ends. See ya later alligators.

The countdown is on 8 days until he's home.

....... blank.....

I've been sitting here staring at this screen for longer than I care to admit. Normally when I finally get a chance to sit down the words just pour out of me. It's almost like an exorcism.
Whatever thought, feeling or problem I'm facing I just start writing about it. Usually saying a whole lot of nothing using a lot of words. But, I'm not having a single strong thought, feeling or problem tonight. It's all just a mumbled jumbled mess. I think maybe I'll just stream my conscience.

Scott walked 23' today. The walk isn't getting better in the level of assistance that he needs but were hopefully it will come in time.

Baby Layla haunts me. I check her blog several times a day. I don't know why, I don't want to hear that there is no miracle.

Why did K ask to go to bed 25minutes early? Is she getting sick... again?

Where can I get some Girl Scout cookies? Those caramel ones are delicious.

I really should clean up the toys that have consumed my living room.

I should say something about how overwhelmed I am by the honest, sincere responses in the last post. I'm surrounded by such incredible people.

How in the world am I ever going to be ready to get Scott home March 6th?

How do I repay all the people that have made the last 7 weeks survivable? How do I show them just how much we care and appreciate?

What should I do tomorrow? Go away to my happy place alone and clear all the junk that is in my head, spend the day at home with K where I can't escape the household burdens, or go to the hospital and scream yell and stomp my feet until I get what I want? Which is the best choice big picture?

Why haven't I seen a Girl Scout with her damn crack cookies?

Should I dye my hair? I feel frumpy.

I need to find the right wheelchair for Scott. How bad are wheelchairs on carpets? Why do I care this carpet is trashed? No point replacing it until after the big party.

Why did the lawn service just call my house at 8:50pm? Um, I'm kinda too busy to think about the grass that is hidden under layers and layers of snow. Mmmm... not happening this year... thanks for calling.

I'm exhausted. I'm saying nothing and this post sucks. That is all. Thank you and goodnight.

Well, maybe not...
Let's redeem this horribly mind numbing post with a contest.

What are Scott and Carole celebrating in this photo?

To the winner goes a RUSH t-shirt hand selected by yours truly.

Heavy

I had a very funny (in my opinion) post all planned out in my head. While waiting for the pictures to download and edit I surfed the web and came across this...

http://laylagrace.org/

Suddenly I'm just not feeling the funny post.
As hard as things are for us some days and as much as I cannot imagine my life without my husband I simply can't fathom what these parents must be going through tonight.

Everyday I face the reality that at any moment Scott could be gone.

I have imagined every way conceivable to hear the news of his passing. I've had "the phone call" in my head, hell I've had it out loud with myself in the car on the way to the hospital. I've dreamt about it. I've had moments when Scott was home that I've woken in the middle of the night and Scott is sleeping so peacefully that I can't see his chest rise and fall. I've put my hand to his chest expecting him to be cold only to feel the warmth of his skin and the shallowness of his breaths.
For all the "preparation" I've done I can envision the moment of the loss but I cannot imagine what life looks like after that. I can't figure out what happens after. How does life move forward without him?
I simply cannot imagine not having him here. I know it will happen but I can't prepare for it. I cannot envision it.

How must this family feel? As much as losing your husband is brutal, horrible and life altering the loss of a child, a beautiful little girl just about Kate's age, with so much left to accomplish.... that is something that nobody should ever have to prepare for.

My heart aches tonight. It aches for baby Layla, for every sick child, for every parent that has ever lost a child... My heart simply aches.

I promise you guys tomorrow I will be back with something funny. Tomorrow I will show you Scott's new tricks. Tomorrow we'll rejoice that we have another day together.
But tonight, tonight I'm going to go sneak into my daughters room and watch her sleep. I'm going to listen to her precious little snore. I'm going to envision the full, healthy life she has ahead of her. I'm going to sit and feel grateful.

No Fail Diet Plan

Ladies and Gentlemen, I have for you a no fail, guaranteed diet program. You will lose 50lbs in one week guaranteed.
When your child wants a quesadilla and you're just to lazy to make one and you end up in the Taco Bell drive thru for the second time in two weeks go ahead and order the super nachos supreme with heavy sour cream. Take it home and sit down at your kitchen table. Go ahead and take a few bites. I know what you're going to say "a minute on the lips a lifetime on the hips". Don't worry, with my no fail diet plan you'll be just fine.
Sit down with your Taco Bell, enjoy those bites and then open up the latest EOB (explination of benefits) from Blue Cross Blue Shield. I guarantee you'll stop eating, probably for days, and you'll go throw up everything you've eaten for the last week.
This Ladies and Gentlemen is how you lose 50lbs in one week.

*results may vary*

Holy shit! Was expecting the routine stuff we've been getting. Pathology tests, xrays, etc. Boy was I in for a surprise.
In the latest stack was a $426,240.24 bill from the hospital from Jan 6 - Jan 27. Almost $93,000 in blood product alone. This doesn't include any of the doctors, anesthesiologists, or lab work. Almost puked right there at the table. Probably would have if someone had been here to clean it up for me.

Now, it is important to say we have good medical coverage and these are not our direct expenses but... good heavens!

I'm beyond ready for this crap Monday to end. Scott had a crap day. Nothing specific wrong just still can't quite get going. He wants to work hard and is "geared up" but physically just can't quite get going. His leg still has the increased swelling which makes it achier than usual.

I'm going to spend the rest of the evening with my bestest girl trying to shake off the bad case of Mondays that I've got and then I'll fantasize about climbing in a bottle of Effin and staying there until spring. I'll have to have that fantasy while I start packing up the downstairs office so we can move it upstairs and move the furniture from one of the guest rooms downstairs for when Scott comes home.

So tell me how is everyone elses Monday? Does misery love company or can you share a happy tale of how Mondays are fantastic and you spent the day playing in the pretty white snow? Do tell....

Time Flies

Who is this big girl?

Seriously, I can't believe how "old" she looks.
On a side note - look at the wild hair on my kid. Can you tell it was a little humid here today?

Spent some family time together today. We watched a movie.

Took a trip to ABP (Au Bon Pain- the cafe in the main hospital)

"Mama, watch it. Don't be eyeballing my fruit."

Then Grammy and Papa showed up and K was off and running.

Yes, she is completely spoiled. Why do you ask?

We had a nice morning together. The afternoon brought our weekly Sunday visit from Bonnie. I headed home early to spend some Mommy and Katie time.

Yesterday (Saturday) was a good day as well. Scott had PT at 1pm. PT Kate was working which was great!
Scott had kind of a rough day. Never quite got his footing and was exhausted. Not surprising considering he had such a great PT day on Friday.
Again, in my absence he stood up on his own for the first time, walked backwards (assisted) for the first time and walked (forward - assisted) for a new record 18 feet.
I can take more time off Scotty, just say the word I have important things I could be doing like getting a manicure and catching up on some soap operas. I'm sure you would be running a marathon in a week if I did.

This entire weekend Scott has been a little "off". He's been super tired and his leg has been more swollen, really achy and blue toe.... yeah blue toe is so not happy. Dr. Ben paid Scott a visit this morning to just get updated. Sorry I missed you Ben.
Hoping for another good week, like last week. Praying Scott feels back to his spunky self and that we can find Scott some pain relief especially during dressing changes. I hate listening to Scott curse and groan. Not because I have such delicate sensibilities (stop laughing) but because Scott doesn't curse, groan or scream out in pain - ever. He leaves that to me.

We're outta here! Peace!

"What the hell is wrong with Scott?"

>> Saturday, February 20, 2010 – doctor appt, drama, family, IR, KT, life, love, miracle, OR

Well, that's a very good question.

Scott has a genetic disease /disorder called Ehlers Danlos Vascular type (VEDS) previously refered to as type IV EDS.

Here are a couple good links with lots of super medical mumbo jumbo

http://www.edstoday.org/info/types/vascular.htm#Links"

http://ghr.nlm.nih.gov/condition=ehlersdanlossyndrome

In a nutshell. Scott's DNA, specifically COL3A1 is mutated (Scott's is a G when it's supposed to be an A). His body doesn't produce the correct amount of collegen. Collegen is what holds your body together. Most EDS patients have problems with their joints, and thin skin and then there are VEDS patients like Scott.
Here's some good information on COL3A1 http://ghr.nlm.nih.gov/gene=col3a1

Scott's problems are in his vascular system. The lack of collogen makes Scott's arteries weak. This weakness causes aneurysms, and AVM's (Arterio-Venous Malformations). His arteries are very soft, we've heard doctors refer to stitching Scott up is like trying to stitch Jello. Take a moment and picture taking a needle and thread and pulling in through Jello without causing it to split. So not easy. On one of Scott's recent surgeries Dr. Jacobs described his femerol artery as piece of wet tissue paper.
VEDS is the only fatal type of EDS. There is no known cure and the only thing you can do is manage the "fallout" from an event. Which is why the best vascular surgeon at RUSH (in my opinion - and lets face it my opinion is the only one that counts) is on my speed dial.

At any given moment Scott has numerous aneurysms in his body. Most of the time we don't know they are there until they rear their ugly little heads in the form of a rupture or bleed.
We currently know of several aneurysms that Scott has existing in different parts of his body, the most serious of these is in the hepatic artery. This is the only blood supply for the liver. Should this friendly little guy decide to cause trouble it would mean serious business and in all reality probably death.

So if you see Scott please be sure to not look in the general direction of the hepatic artery and for God's sake if you do make sure you talk slow and gently to it.
Please do not provoke the hepatic artery. Thank you for your consideration.

History -
Scott has had 6 aneurysms rupture making life very complicated.
What we now know was the first aneurysm was in Scott's right leg in Feb 2000. The doctors incorrectly diagnosed the rupture as compartment syndrome and performed a faciotomy.
Number 2 - The second aneurysm was in his left leg. This was when he was first clinically diagnosed with VEDS December 24, 2002, a short three months after our first date (and yes it was Christmas eve - my hubby has always been the best gift giver). Scott had his first angiogram the day after Christmas 2002 and his genetic study was completed with a VEDS diagnosis in March of 2003. The treatment of this as well as the diagnosis was done at Advocated Luthern General.
Number 3 - Fast forward to 2004, Scott had an aneurysm in his ulnar artery in his left arm. The vascular surgeons at Luthern General were terrified by Scott and kicked us to the curb telling us to go seek help at RUSH.
Best thing that could have ever happened. We found our miracle worker; Dr. Chad Jacobs.
No intervention was necessary with that aneurysm it resolved itself and occluded(closed off) the ulnar artery.
Number four - (bored yet?) Number four was a biggie. Scott's splenic artery ruptured. This was the 90day stay at RUSH from May 13 - Aug 13 2008. I blogged about stuff at that time. If you've got several hours you can read it here www.livejournal.com user name katesdaddy.
This stay was a huge wake up call. Scott spent much of this time very close to death. He was intubated with a ventilator breathing for him for long periods of time. He had days where he would have procedure after procedure. We chased and chased, fix one problem, develop another. Dr. Jacobs was nothing short of phenomenal. But in the end it was Scott's body that did the real work. Dr. Jacobs just gave him the time he needed to recover.
Numbers 5 and 6 - during the '08 stay at RUSH Scott developed radial aneuyrsms in both arms. Dr. Jacobs performed surgery on both and tied off the radial artery in both of Scott's arms. If you're keeping track in Scott's left arm he has lost 2 of the 3 sources of blood supply.
And then lucky number 7 - that would be where this blog started.

Angiography has played a huge role in keeping Scott alive. Scott most certainly wouldn't be here with out it. But, from an emotional stand point angiograms are the hardest things for Scott and I to handle. Which leads me to ...

Family History -
We have trouble dealing with angiograms because Scott's mother (Paula) passed away from complications from an angio. Her VEDS was undiagnosed at the time, the doctors fixed what appeared to be a typical bleed resultant of a fall she took. Upon completion of the angio Paula became seriously ill and died on the operating room table while the doctors tried to fix her bleeding.
While I was never blessed enough to meet her I can't help but think of her death everytime Scott has an angio procedure. Even though Scott has had more of them than I can count, every one of them gives both Scott and I serious pause. They will never be easy, but having a fantastic team of IR's (interventional radiologists) that all know Scott inside (literally) and out makes us feel a little more at ease. Those guys truly know how fragile Scott is.

Scott's sister Tamara also had VEDS. Her's was diagnosed after years of bowel problems. She fought the disease her entire life. She passed at the age of 29 having spent the last 53 weeks of her life in the hospital.
Looking back now, the doctors did so many things incorrectly in treating her. If they knew then what we know now... She still would have passed but she may have been here a little longer and she would have had a better quality of life.
Part of what we love about Scott being a patient at RUSH is all the medical advancements that they make every day (hello Bio-Glue). So many doctors, nurses, techs etc. are able to learn from Scott. Maybe they can learn enough to cure this disease.

Knowing that VEDS is genetic we always get the question what about Kate? Kate is fine, perfectly normal. We achieved pregnancy by using every medical advancement in fertility options available,
Preimplantation testing, also called preimplantation genetic diagnosis (PGD), is a specialized technique that can reduce the risk of having a child with a particular genetic or chromosomal disorder. It is used to detect genetic changes in embryos that were created using assisted reproductive techniques such as in-vitro fertilization. In-vitro fertilization involves removing egg cells from a woman’s ovaries and fertilizing them with sperm cells outside the body. To perform preimplantation testing, a small number of cells are taken from these embryos and tested for certain genetic changes. Only embryos without these changes are implanted in the uterus to initiate a pregnancy.).
Kate may have been created in a petrie dish but she's perfect. Absolutely, completely perfect.

We know that Scott will leave us too soon. I know I will have to explain to Kate that her daddy is in heaven. I know I will have to find a way to move forward with my life without Scott in it.

When we first got Scott's diagnosis Scott told me I could leave, said he wouldn't blame me, wouldn't hate me, after all we'd only been together 3 months and we already knew he had MS (multiple sclerosis) (when it rains it pours around here). The answer I gave him then is the same as it is today. It doesn't matter if we're given 5 minutes, 5 days, or 50 years; my life would never be complete without having him in it.

We live in every moment, soaking it all up and feeling grateful. Facing each day with as much grace, love and fun as we can. We choose to not see everyday as the last day but to embrace each day as the gift that it truly is.

New Kicks and a Decision

Scotty got his bad self a new kick today. Check it out!

Here he is taking it out on the first test ride.

Pretty good reviews.

This new shoes is designed to help mobilize Scott's foot better while protecting the top of the foot and the back of the heel/calf where all the disgusting stuff is.
They need some slight tweaking but so far they are a huge improvement from the "boot" he was wearing before.
YEAH!!!!

Scott had a good day today. Lots of walking. Walking that gets better everyday. He walked 13' on at least 3 separate occasions during his first PT session.
Go Scotty! Go Scotty! Get busy!

And now the decision -
I've decided to not post the truly gross photos we've been taking of Scott's leg. We are willing to share with anyone that is interested but I think most of you don't really want to know how bad things look.
The healing of these wounds is going to take months. Taking photos along the way is my way of keeping things in check. It's easy to forget where we've been. And since these types of wounds are going to be common place for Scott from now on I'm hoping the photos serve as a reminder for me of how to care for them properly once we come home.
So anyone that is interested in seeing the pictures just leave me a comment here, email, text, call or light a signal fire.

I'll be home tomorrow with Kate and spending some time in the dentist chair (Hi Kevin!). Looking forward to the day with my bestest girl. I can't wait to hear what milestone Scott will achieve in my absence.

Why So Blue?

When Scott has his leg elevated (up on a bed) for more than a couple hours his baby toe turns blue.
Don't worry this is as ugly as the pictures get. I don't want anyone tossing their Cheerios.
It's hard to capture in photo but it's quite blue and cold compared to the other toes.

Then we get him up.

Get him moving

Make him stand up and face the world.

And at the end of the day his entire body is exhausted but the toe it's not so blue.

If At First You Don't Succeed

First we tried this....

Mmmm... not so much kids.

So then we tried this....

Now, this was a winner!

Scott had an A+ day yesterday so it stands to reason that today would only be a C+. He was pretty exhausted all day and couldn't quite get his footing. Days like today are to be expected. But, his fatigue didn't keep him from working as hard as he could possibly manage. He fought hard all day and gave it 100%. Even his "bad" PT days are so superior to where he was a week ago. Such amazing progress.

Keep on "Truckin'".

Monday Again

Scott obviously doesn't think very highly of Mondays.

Poor Scott got worked to the bone today. He's such a super trooper. He walked over 5' (I'm guessing closer to 8' but I could be wrong) today using his walker. He did lots of standing and lots of steps. Working so hard that PT Nate knew he had finally completely exhausted Scott because for the first time Scott sat there and couldn't say a word.
Can you all imagine Scott so tired he can't say a word? Yeah I couldn't either.

We did see our vascular boys. It was great to see them as always. They really help me understand what's going on, what to expect and give me tools to make things better.
Scott didn't dig there action quite as much. They did a dressing change on Scott's disgusting (it needed an upgrade from yucky) calf. Dressing changes there are now extremely, extremely painful for Scott. I tried to remind him that the pain was a good sign, if looks could kill you all would be planning my funeral.
Some changes in protocol for handling the healing, or non-healing as the case may be. They are still pretty happy all things considered.

Moving ahead one teeny tiny step at a time.

Scott Walks and KT Dances

uploaded some video to You Tube for your viewing pleasure.

The quality sucks. My phone can solve world hunger but it takes crappy photos along the way.

I really wish you could hear the song (Credence Clearwater Revival) that KT is dancing to at the bowling alley but.... it's still hysterical.

http://www.youtube.com/werewitty

Also, on the link is the Sushi Night Jam Session and some older videos of KT.

Starting off Monday with some PT and OT waiting on vascular to come pay us a visit. Scott's crappy leg is looking crappier yet again and starting this morning Scott's baby toe is blue. Monday's are always such a pleasure.

Not going to stop us. Keep pushing, we've got some big plans for this summer kick off party.
Thinking about maybe Memorial Day weekend. Thoughts, objections, votes.....

No Holiday For My Valentine

Scotty worked his butt off in PT today.

8 steps -

Look at him go!

Kate entertained the masses with her antics.

The "masses"
My mom's elbow (the rest of her was there it just wasn't photographed), Uncle Dean, Aunt Debbie and Aunt Lynn.

Uncle LaVerne - I'm not sure who the child was in this photo.

And in the end, Scotty enjoyed a few sweet treats.
Jen and S4 brought cupcakes.

The infamous Bonnie came for her Sunday visit.

Kate and I made cookies.

This doesn't include pictures of the homemade chocolate cake that Aunt Debbie brought all the way from Iowa, or the sweet treats from a family favorite bakery in my hometown of Ottumwa.

Scotty boy is pretty spoiled. He deserves it.

In general a very nice Valentine's Day.

A few problems to handle tomorrow. But those will keep until then.

Hoping all of you had a wonderful Valentine's Day!

Valentine's Day

Hoping you're spending today with the special people in your life.

I will be.....

Baby Steps

Apologies for the tardiness of this post. I've had a couple texts making sure everything was ok.
Everything is more than ok. I have some pretty big news to report.

Scott took some steps!!!!

Of course, keeping true to fashion, Scott did this while I wasn't there. I'm going to start taking more time off.
The steps were reported to be very, very tiny and with quite a bit of assistance but holy catfish kids they are steps!

So while Scott was rocking it, I was at the dentist. Yeah, who drew the short straw today. Ended the day on antibiotics for an infected tooth. LAME-O.

Looking forward to seeing all the family and friends that are coming in to visit this weekend.

It's way beyond bedtime, I'm going to drug myself up on Advil and go to bed.

Some Answers

Finally got a few answers this morning. ~~YAHOOOOO~~~
Dr. Bruegger (GP) said that Scott is looking pretty good. All the tests came back with decent results, except for the DVT in his calf.
For right now we are attributing Scott's dizziness, fatigue etc on a medication that Scott had recently started taking to help him sleep. We stopped the medication (last dose was Monday night) and today Scott was feeling better. While he's still not back to where he was on Monday he's doing better. Hopefully he'll be back to where he was on Monday after a restful weekend.

The DVTs (blood clots) that were found in Scott calf yesterday may be the death of me. They are causing some significant swelling in Scott's leg which in turn is making all the horrible skin problems (black yucky spots) get worse.
We just can't seem to catch a break with this leg. It's huge, swollen, useless and a maintenance nightmare at the moment. But it won't last forever and we are seeing some small signs of improvement as it relates to feeling and movement. They are tiny improvements but we'll take 'em and do a happy dance with every teeny tiny forward step.

Scott did PT and OT for 2 sessions each. He worked really hard and pushed through the still slightly "off" feeling head. I continue to be amazed by his tenacity and drive. Wish I could find half as much drive when it comes time to get the laundry done and house cleaned. Can you say "train wreck"?

Hoping this last setback was only for a day. All the sunshine here today fills me with hope.

***********************
BIG NEWS - Baby Ryan was on his way home tonight. He should be snuggling his mommy and daddy and sharing smiles with his big brother Adam in his own home.
Homecoming are such wonderful moments, we can relate to how the Donahue's must be feeling tonight.

Remember Scott's homecoming from his stay at RUSH from May - July in 2008?

Now, that was a good day. The next homecoming can't come soon enough.

Becca and the other "lurkers" please don't be shy about posting comments. We cannot say enough about how beneficial ALL the comments are to us. It's so easy to get lost in "medical world" it's nice to have other peoples stores, comments or perspectives to talk about. It's a little piece of sanity for us.

Oh and Becca, sitting there being Scott's "recliner" made me tear up too. I too am a sap... when I let myself be.
So much of my time is spent as "nurse" or PT/OT assist (which I love and need to be able to do) but it was nice to find a moment to just be his wife.

Setbacks

We HATE setbacks. They really fuck everything up. They are tiring, emotionally draining and literally physically draining.
Today was spent with Scott having a series of tests.
Started with an ultrasound on Scott's left calf. Yes, the damn left leg again. Noticeably more swollen this morning we thought DVT (blood clot) sure enough DVT, just as suspected. The ultrasound chick, Maria, whom we've had repeatedly, reported "there is all kinds of strange stuff going on down there". Oh, goody thanks for that, we love you too.
Next came the EKG - guess what kids, Scott has a heart and it's beating - YEAH *jazz hands*
Then the chest xray - Scott's one boney dude - no results reported at this time
After that came the echo cardiogram (ECHO) (basically an ultrasound of the heart) - again showing that Scott has a heart and again it's beating. No, real results reported to us from this one either.
Additional blood workups - checking Scott's heart function - normal reports from this test.

This is all a result from a tense couple of dr. conversations this morning.
Scott woke up and continued to feel lightheaded and very fatigued. Dr. Young, Dr. N, and Dr.Ben (safely home from Haiti) all visited.
Dr. Young was rather dismissive to both myself and Dr. N and Dr. Ben., as you all may remember from my showdown with the SICU doctor, dismissive just doesn't fly with me. It's a real quick way to get me to use my foot to show you to the door.
Don't get me wrong, I like Dr. Young, I really do, I think he's a great doctor and knows what he does like no other. But, I'm the best tool these doctors have in their tool box and when I'm not being listened to we will fail, Scott will fail and I canNOT allow that.
Dr. Young has been tremendously helpful in the other areas of managing Scott's on- going medical concerns. He's been a huge activist in keeping Scott pain free and he's come up with a few other great plans to help Scott get back on track with all the potty issues that come from a month long hospital stay, I'm very grateful. But this time, with Scott being weird and having lots of non-typical presentations I feel like he wasn't listening well enough.
Plus, he talked to Dr. N and Dr. Ben like they were fleas on his dog. This drives me bat shit crazy. These two men, may look like kids to him but, they have saved Scott's life countless times, they have earned respect.
If I could only pick one doctor to have for the rest of my life it would be one of them, and I have no vascular issues. I trust them so completely, and to see someone who has done so little for us treat two people whom have done so much in such a shitty way really chaps my ass. I understand hospital politics and hierarchy and the Vascular boys didn't mind it (they are used to it) but I take offense.

Phew, I guess I needed to just get that all off my chest.

Back to Scott. We brought in a "medicine specialist" which basically is a hospital internist (general practitioner) to try to get the bottom of the fainting and fatigue. Dr. Berger (the GP) is who ordered the heart work up. We're expecting to have a full picture of all his findings tomorrow.
Scott was feeling a little better tonight, we'll see what tomorrow brings.

Scott had zero PT and OT today. We're unsure how the DVT in the calf is going to mess with PT, we'll cross that bridge tomorrow.

I think it's also important to tell you all why I'm so bothered by this dizziness. Scott had something very similar to this happen two or three days before Christmas which is when this all first started with Scott's left leg. Could be coincidence but until we know a little more I can't rest, I can't be settled and I can't let it go. Time will tell, I'm hoping and praying for coincidence.

A funny highlight to the end of our day was when this cute, perky, overly nice, totally clueless early-20's girl walked in Scott's room at 3:45, all the test have been done, we've had a bad day, they found the DVT's which will slow us down, we're exhausted. She bounces in and says in this very nice voice "Good news, they set a release date for you." She stopped smiling when I started laughing like a hyena. Poor girl hadn't heard about our day, no fault of hers. She was just doing her job.
She paused while I rolled on the floor laughing and then she says "well, it's not until the 20th." More hysterical laughter. When I finally manged to compose myself, I explained the day we'd had, told her we knew the process and we knew that the "release date" was more a date to make the insurance happy and less of a real release date. She was very apologetic, very sweet and maybe a little scared when she left.

Release date, bahahahahwhahhah she said release date.....sides hurting, can't stop laughing..... We'll be out of here soon enough but I'm not seeing the 20th.

*************************
Other news - Baby Ryan, is doing better. All the love and well wishes are working. He's still needing oxygen but he's getting stronger all the time and Alli reports lots of smile today.

Other, other news - Phil Harris, the Captain of the crab boat the Cornelia Marie died on Tuesday. Upon hearing this news I sobbed.
Those of you that know me really well know that I have a very strange fondness (love really) for the show The Deadliest Catch on the Discovery channel. I've been known to watch hours of this show.

I can admit I have a serious problem - admitting is the first step toward recovery

Captain Phil was a true character, no Jersey Shore, The Bachelor, The Hills, fake acting here. He was the real deal, out doing seriously dangerous work so I can stuff my face with some crabs. His love for his family and his job were unmatched. I'm getting all weepy again so I'm going to shut up now before you all band together and do some type of intervention.

And finally a shout out - Kathy, we know you're Scott's nurse and you kind of have to help but you went above and beyond today, everyday really. You are so wonderful to the both of us and we will never, ever be able to express our gratitude. I know that there would have been a casualty today (in the form of a fired dr or transport specialist) had you not been there to help me. You are the bomb diggity. We love that you're Scott's nurse but we are honored to have you as part of our family.

Tomorrow shall bring a few more answers, I hope.

Unsure

I'm not quite sure what to write about for today's events. So I'll start with a few other items.

Baby Ryan - from the last update I got on Facebook Baby Ryan is still admitted but is responding well to treatments. Alli is now reporting that he has pneumonia and they are expected at least another day at the hospital. Please keep sending those healing, positive thoughts to them. Baby Ryan needs to be home with his brother.
Keep up the good work Ryan. We love you!

The snow sucks it! Scott and I had second helpings of Jambalaya and Cajun corn for dinner, I'm not sure how but it might have gotten better, which I didn't believe was possible. Kate stayed at Grandma and Grandpa's house tonight and it makes me sad.
Our cats are both being obnoxious needy brats. And finally the snow sucks it!

I've stalled long enough now huh? You all come here to hear how Scott is doing. Scott's dental appt went fine. He needs nothing done urgently and hopefully the root canal and crown can wait until he gets home and our usual dentist can do it.

Scott's day started off well. He looked really good, ate a great breakfast and got a decent nights sleep. Went down for the first round of PT at 945, started off well. During Scott's first stand he got a little light headed. He's done this before, he just pushes through it and moves on. The second stand - the light headedness got worse and I could tell Scott was having trouble.
The third stand Scott nearly passed out. He lost all the color from his face and his eyes weren't tracking together completely.
Now, this can be from any number of issues ranging from dehydration to an early warning signal of an aneurysm starting trouble.
After PT Scott headed over to OT to do a low intensity session and I headed out to call Dr. Jacobs.
Jen, Dr. Jacobs physician assistant (PA) came over for a visit to check in. Nothing right now is glaringly obvious that there is a problem. She also checked out Scott's leg while she was there. Jen was elated with the progress on the thigh incision and took a look at the yucky calf/shin.
For right now we're just watching Scott. Watching, waiting and hoping.

Scott did do his second PT session after his dentist appointment. He just did some work on the mat with some stretching and trunk work, very low intensity.
Scott in general has been very, very tired the last two days. He's still feeling a little "woozy" in the head. We're hoping a good night rest helps set things back right.

Tomorrow we're going to jump back on the bus (assuming Scott is feeling well in the am) and go at PT with full strength. Can't slow down now, he's doing to well.

Progression

Let's start at the beginning. Here' shot of Scott's 2nd stand during this hospital stay. You remember the high tech gadgets and all the people that needed to help. This was January 25th.

Then there was this on the 2nd of February. Big improvements already

And on the 4th. It's just Scott and Nate but look at how hard Nate is working. Poor boy should get hazard pay. Oh wait he's just a student all he gets is our torment and the free workout. sorry for the bad cell phone picture

Just look at him today. Nate is using only his arms, he no longer gets the full body work out.

And by the end of Scott's morning session he was using our old friend the Eva walker.

That's some serious, serious improvements. I'm so excited about taking the next steps.

*****************************

Sweet Baby Ryan was admitted to the hospital today to be treated for his RSV. I know how much all of you have prayed, loved and blessed our lives during this difficult time, I ask you to take just one more second and give that same love to this sweet baby.

Alli, we are here for you. I wish I could physically be there to help but we are with you in spirit. I cannot imagine how scary it must be. Try to find peace that he's in the best possible place to heal quickly. Before to long we'll have all the boys home and we'll be sitting in the backyard laughing at the big boys as they play with Pink Death, share a beer and solve all of life's mysteries.
I'm only a phone call away. Any time day or night. We love you guys.

Mid-day Monday Report

Few tidbits for this sunny Monday.

Lets do good and maybe not so good lists again. Humor me I'm a list girl and it's my blog so there. *sticks out tongue*

Not so good - Scott edition
*Scott broke a tooth this morning eating the worlds softest donut. Trouble I tell you.
*Scott's liver function has been getting worse - it's not bad and they are thinking it's because of the meds he's on but I of course can't forget that silly little aneurysm in the artery supplying blood to the liver. This gives me serious angina.

hmmm.... That's it for the not so good for Scott - YEAH!!!! *jazz hands*

Good things- Scott edition
*Scott has remarkable, noticeably better movements in his left leg.
*The left thigh incision looks amazing, So much better.
*Scott's standing in PT are going well. Nate is doing so much less to get him standing.
*Scott is once again using the Eva walker in PT. Some of you might remember it from last time, Eva was a life saver. I've got photos to share later.
*We just finished the most amazing homemade (right down to the broth) jambalaya and Cajun corn EVER. BigDan and Kathy rock the world. I've told Scott that I'm divorcing him and I felt it necessary to let Kathy know I was going to make a play on her man.
*We've got homemade bread pudding with a whiskey cream butter sauce waiting for us after Scott's 1pm PT.

Not so good news - non Scott related
*Ann, St. Ann, our favorite Ann, mother of Andrew, took a fall on the ice and broke her elbow on Friday. She reports that it's a small break and they expect a full recovery in 4-5 weeks. Big hugs to Ann. Heal fast Ann. We love you.
*Baby Ryan is still struggling with his RSV - Come on little man it's time to get better now.
*I have to spend my day off on Friday at the dentist getting a crown
*We're expecting 8-12'' of snow in the next 36 hours.

Good news - non Scott related
*Adam D.'s RSV is improving. He's finally eating after loosing 3lbs. GO ADAM!!!
*Donovan is recovering beautifully from his spine surgery.
*I found my mind. I lost it somewhere around last Thursday but a calm weekend, lots of time with the bestest big girl in the world and her fabulous Daddy along with a little sleep I was able to relocate my mind this morning. Turns out it was in my underwear drawer that entire time. Who knew? Maybe if I stopped living out of the clean laundry baskets I would have found it sooner.

That's about all from here for now. More updates later along with some photos.

Lastly, I need votes. Would you all like to see photos of what the icky black stuff on Scott's leg looks like? A few people have asked me via text or email and I want the general consensus before posting them. They are pretty graphic. I won't post them until maybe wed so you all have time to voice your opinions. I can always just email those that were interested in seeing them.

Later Gators

Silent Sunday

Dear Blogger,
Suck it.
On Sunday night I want to just post a cute picture of my husband and our only child and go to sleep. I do not have the energy to try 1000 times to download the previously mentioned picture just to have you give me some lame ass error message.
Play nice with me Blogger, I can get very mean when I'm pissy.

Thank you.
Mama Witt

So since, I have no ability to share photos right now I'll post a small update.

Scott had a restful day. No PT or OT. Bonnie came up for a visit and went on a walk with us. We took a journey over to the main hospital to visit the gift shop and get me an ABP lunch. Scott got his Valentines Day shopping finished at the gift shop. Thanks for helping us out Bonnie!

Scott rested until my family arrived with a Super Bowl spread. We stuffed our faces and watched part of the game. I successfully manged to not see one single play of the entire game. It was awesome.
GO SAINTS!

Lots of hard work coming up this week. I'm hoping to get some answers on why Scott's blood pressure and temperature get nutty every night. His BP was something like 138/42 tonight. It's been doing this the last couple days and it's bothering me. I'm sure there is an easy answer I just don't know it.

So there you have it, my tired ramblings because Blogger sucks it.

Hoping for a healing week for all the "sickies" in our lives.

And Me Without My Camera

KT and I visited Scott today. Got down there just in time for Scott's PT and OT.
KT was quite helpful in PT.

"You can do it Daddy"

"Go Daddy"

Then we moved into OT. Scott got to practice his shirt on shirt off capabilities.
This pretty little number was the only thing around.

Lets get a closer look at those sparkles. Super hot Scotty, super hot.

We had lots of fun on our visit. KT went home with the Grandparents for nap time while I stayed behind to spend some time with Scotty and do his dressing changes and such.
I was at my parents in time to get K up from her nap. It's probably a good thing I got there before they could corrupt her any further. Turns out in my absence my father and brother have taught K a few new tricks.

Here is K eating the Parmesan cheese out of Papa's hand at dinner. Papa makes a little bowl with his hand, K fills it with cheese and then proceeds to eat the cheese out of his hand.

I'm not going to tell you what Uncle Justin is responsible for teaching her but I'll give you a little clue... it starts with the steal your nose game and lets just say Uncle taught K what happens when you eat something. Golly gee Uncle Justin, you're the bestest ever.

We had a pretty good day and are looking forward to spending more time together as a family tomorrow.
Sending more get well wishes to our dear friends the Donahue's. Both boys now have RSV and poor little Ryan is only 3 months old. Hoping they get some rest soon.
All the illness I've seen in the past month and nothing, absolutely nothing is worse than kids, babies, being ill. It breaks my heart.
Be strong Alli, sleep every possible second the boys let you.

My Day Off

So I spent my time away today eating BonBon's, painting my nails and reading trashy magazines.
And then it was 5:45a and I woke up. My fantasy was shattered. My raging sore throat and snotty nose had come to rain on my parade.
Kate spent her usual Friday morning at pre-school while I ran around town with my box of Kleenex doing fun things like oil change, bank deposits, grocery store (the kid thinks she needs milk and fruit - whatever kid drink the tap water) and Hallmark. Oh gosh kids Hallmark.
I lost it in Hallmark. Finally all these weeks of stress, fear, uncertainty and lack of sleep caught up with me. Standing there reading Valentines cards to Scott from Kate and to Kate from Scott, I turned into an absolute sobbing mess.
It was so not pretty. I'm sobbing and muttering things to myself like "what if this is the last Valentines we have together." I got mad that all the little kid cards are so surfacy. I didn't want surfacy, what if this is the last card? I want Kate to have something for her whole life that says just how her daddy feels about her. I'm here to tell you nothing with a strong sentiment comes with Dora on it.
To distract myself I went over to find a card to give Scott myself. Boy, that was stupid. I needed someone to grab me by my hair and drag me out of that damn store. But no...I'm too stupid to stop torturing myself.
Rest assured, I got my cards and I left them $150 for the hour of therapy.

I picked up Kate and we had lunch with a friend. While K napped I cleaned the house, paid bills and made some phone calls. Today playing the role of Adult is Brandi Witt ..... said in my best announcer voice

After nap K got a hair cut, we had dinner just the two of us and played about 600 rounds of hide and seek. It was phenomenal (well except that whole Hallmark thing). K is winding down and I'm posting this.

I got a great report out of JRB today. Scott had what he called "my best stand yet and it lasted 3 minutes". Sounds like he pulls out his best work in my absence. It sounds like he had a wonderful day.
I can hear in his voice that he's exhausted which is a good thing. Thanks PT Nate, Kate, OT Carole and Terri. And a super big, huge, ginormous thank you to Kathy. I wasn't a mess all day because I knew he was in good hands. That is the best gift anyone could ever give me.
And of course Scott is so popular he got some visitors. Sorry I missed you Allison, thanks for the call. Hugs to the family.

Looking forward to going up and seeing Scott tomorrow. I didn't miss the drive but I did miss my husband.

Little Drummer Boy

Scott has had a busy couple of days. He's been working really, really hard. He's had a couple road blocks (blood clots, etc.) but it hasn't slowed him down. He just keeps pushing through.

Just look at all this work.

And OT he's been working the hardest in OT

Scott's new drum kit.

Gee, thanks Carole.

It may look like a lot of fun and relaxing but it's not. The drum kit is actually quite difficult for Scott to do and the shots of Scott and PT Nate were during the 3 minute rest period Scott gets between stands.
Scott has actually gone from a 1 minute stand on Sunday to an almost 3minute stand today.

No small bumps are going to slow Scotty down.
I'm hoping to take a break from the hospital tomorrow. Assuming Scott doesn't do anything creative I'll be spending the day tomorrow with my best girl.
I'm leaving Scott in the very capable hands of Kathy and she's got all the support in the world from BigDan.

You two take care of him for me. If he gets out of line a good thump to the head will set him straight.

Sending out thoughts and get well wishes to Donovan (healing form his spine surgery) and Adam Donahue (Poor kid has been seriously sick RSV, ears etc..). Get better soon lil a KT is ready for a play date.

Keep on truckin'

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