My e-mails:

Feb. 22, 2006:

Will is in the hospital.  What started out as a typical migraine for him went wierd.  On Thursday it was normal, then on Friday he had some numbness.  While that is normal with migraines temporarily, it didn't go away...it just got better and worse.  He was still functioning and since the pain was coming and going as well, we just figured it was a bad episode and he needed to call the doc on Tuesday to maybe up the doseage on his preventative (Monday was a holiday).  Monday rolls around and at 5am his arm starts spasming.  I rushed him to the ER at this point.  After a consult with the neurologist there, they did a work-up on him...MRI showed a spot on his brain, bubble echocardiogram showed a hole in his heart that we never knew about.  Realize Will just had a work-up done 6 months ago and was told everything was perfect and that migraines can be wierd...so all of his are normal even though they seem really scary and strange sometimes. 

The spot on his brain they are claiming is a blood clot that got through the hole in his heart.  Instead of being filtered through the lungs, his blood flows the wrong direction in his heart (because of the hole) which sent the clot straight up to the brain.  The doctor said the clot caused Will to have a stroke and that is why his arm was jerking and it's weak and clumsy.  If it is that, by removing the clot, he should get his feeling back and be ok.  But the clot is causing him MAJOR headache pain...it's awful.  BUT with that said, he will be fixed.  He'll have a procedure to close the hole in his heart once they get rid of the spot on his brain and in the meantime he's on blood thinners to also prevent any other clots from forming.

We've learned that doctors are finding a tie between having a hole in the heart and having migraines.  Go to www.pfodoctor.org and you can read all about this.  That is the diagnosis they have for Will so far.  They need another MRI to prove it which is this morning.  If it's not a blood clot that can be dissolved by blood thinners, giving him back his full right arm's capacity, it could be a tumor or an infection.  So the waiting continues...

Please forgive me for not calling...I'm very overwhelmed and  just don't have enough hours in the day to visit Will and be with our babies...so...what a mess.  My cell was dead all day so I couldn't make calls outside of the 805 area code.  Today I can.  If you want to call him, you can...he is on a lot of meds, so if he's loopy, you'll have to forgive him.

Honestly, we are being optimistic despite how scary this all sounds cause we know he can be fixed...  It's the WAITING to know what it is that is making us nuts and not having him home.

He's at Los Robles Hospital in Thousand Oaks, Room 336B.  I will have on my cell.

I'll send out a mass e-mail once i know more...

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Feb. 23, 2006

Hi, So today was a bit more informative as of the past couple of hours.  Will woke up quite ill...definitely worse than yesterday.  More sensitivity on his chest and less sensation in his arm, more headache...more drugs...you get the picture.  He was very ill from the narcotics and was put on an IV finally since he was dehydrating. On an uplifting note, he had a catscan that gave some answers, unfortunately they aren't good, but they are answers nonetheless.  It showed that what is on his brain now has an enhancement which means it is getting worse.  Some of his levels were high which support that abscess theory now (the bacterial one even though he doesn't have a fever) and some levels were low that rule out a tumor.  A stroke has been pretty much dismissed as an option at this point since that would have been indicated by an improvement rather than by what we saw in the catscan. So what is next is that all of the pictures/tests are being sent to the Chief of Neurosurgery at USC tomorrow morning for a final opinion on brain biopsy.  We are pretty sure that is going to happen Monday morning unless the opinion has another point of view.  The good thing is that the brain biopsy and a draining of the abscess can happen concurrently, then antibiotics will handle the rest. There's just the scary fact that it is a brain biopsy that scares us.  We're hoping it will be easy, but this anomoly is by his motor strip so I am terrified.  Less than 1% chance of something going wrong, but then again, there was a 1% chance of something getting through the whole in his heart and it did....so you can understand my fear.... So we wait again for an opinion and for Monday.  I want to say how very thankful Will and I are for everyone's support...flowers, balloons, food, babysitting offes, sweet messages of encouragement, shoulders for me to cry on and just good hugs....I swear it is helping us through this more than you know.  I just still can't believe this is all happening:(  We're gonna make it through this, I know...it's just so hard.  So thank you....  And I promise to keep you all posted and call when I have time or e-mail. love,
Marci, Will, Katelyn & Zack

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Feb. 24, 2006

Hi, Again thank you so much for all of thoughts and love...it does help big time. We are moving forward with the brain biopsy on Sunday morning at 9am.  Please says some prayers for my sweetie.  I'm scared, but I know that will be the answer to this hellish nightmare.  We will finally know if this is an abscess, a tumor or a stroke (we're getting most support on the bacterial abscess now). Today he was worse, more weak and clumsy with the right arm and needed double the narcotics.  Yes it's a mess...we're being strong and still have our sense of humor and optimisim going somehow.  It's hard to break our spirits and this is proving that if nothing more;) The USC chief of neurology, his radiology staff, multiple neurologists and neurosurgeons are all on this case and so we have confidence that this will be sorted out soon. Unless something happens tomorrow, like he's feeling a bit better, I won't be sending out another update until after the biopsy cause there won't be much to say till after that.  So just think a good though for us please... love, Marci, Will, Katelyn & Zack

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Feb. 26, 2006

Yes, finally a small smile from me...  We found out today that Will had a bacterial abscess on his brain that was drained this morning during the biopsy.  I can't even begin to explain the elation I felt, knowing we had an answer and at that, the lesser of all of the evils presented to us.  Last night was really bad.  His pain and nausea was off of the scale in terms of measuring from 1-10 and he was moved to CCU (cardio intensive care) since his heart rate was dropping due to the meds in him.  I almost fainted from the anguish and it all...this is so hard:(  I stayed with him until he was sleeping hard enough for me to tear myself away and get some rest for myself. So this morning he went in for the biopsy after a quick Catscan to see what was going on in there.  The neurosurgeon has no other info for us just yet concerning how he got this abscess on his brain or what exactly it is just yet (it is being cultured and we'll know a lot more tomorrow I hope).  We know he'll be on intravenous antibiotics for 6 weeks in addition to continual MRI's for a while.  The meds have already been started.  Hopefully this nightmare will end soon...but the worst hopefully is behind us now. Thanks for every prayer...while Will isn't with it enough just yet to add to these thank you's, I know he will be soon enough.  I'm so thankful for all of the love and support we have.  The CCU is AMAZED at the loving friends and family who have come to be by our side during this hard time. Again I apologize for not returning all of my cell messages...I have been with doctors constantly and family and WILL or my kids...but I will make the rounds soon. So, I am off now to go back and see Will to kiss him goodnight:)  I hope I have even better news to report tomorrow. lotsa love, Marci, Will, Katelyn & Zack

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Feb. 27, 2006

Hi everyone, So here's my update: Information is still not complete and Will is just not himself.  He is very disoriented and is very agitated.  His movements are not voluntary and he can not see...his vision is impaired at the moment.  This is ALL normal and due to the swelling in his brain, so I have been told to be patient and it will all get better soon.  It's just really hard to see him like this:(   It's scary.  I was told by the neurosurgeon that he'll get worse before he gets better due to all of the stuff the brain biopsy causes and well, the infection itself causes.  This evening made my day since the nurse told me that he ate some jello and when I rubbed his cheek, he was calmed by my presence.  So...slowly but surely...it'll all be ok.  I just have to repeat that a bunch. The latest catscan shows no worsening of his condition which is great.  There hasn't been any improvement yet other than a slight improvement on pain, but really since he can't communicate well, it is hard to know for sure.  I hope tomorrow will be a more informative day.  We're waiting for the culture still... So not much to report...just trying to stay strong.  His family and I miss him a lot... love, Marci

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Feb. 28, 2006

Hi, So things are looking a bit up for Will!:)  As of this morning, he is off of the pain meds...so he is not only not in much pain, but is getting to be more coherent.  I actually had a semi-normal conversation with him this evening.  Now, some of it is completely loopy since he isn't all there just yet, but he is definitely coming around.  I actually explained to him what they found in the biopsy with the abscess and such, and I swear he understood.  He apologized for putting me through this and asked me how I was:(  It made me smile big to hear him talk.  He admits he is confused and not able to control a lot of his movements, but he is able to understand some...so...yay:)  I am hoping the worst is behind us and that tomorrow things will get better and better, but for now, I am so thrilled to have actually chatted with him, I feel like I can sleep comfortably. The doctors are now concluding that whatever caused the abscess was definitely from his mouth or from his gut.  Since he hasn't had any digestive issues, I offered to the doctor that Will is flossing his teeth a lot these days and actually started to really get into it about 6 months ago.  I couldn't believe it, but the Infection Specialist actually said that bacteria from flossing probably got into his bloodstream and because of the hole in his heart, that is probably what did it.  So...yeah, lets see if Will's as excited to floss now.  The doctor said that it can happen again if we don't close the hole in his heart, so once the infection is taken care of, Will is going to get that done.  So that's all I know...I am going to sleep now.  I'll keep you all posted... love, Marci and fam

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March 1, 2006

Hi, Will is doing a tad better today...not a lot, but enough to give me hope for tomorrow.  Still no vision recovered yet which is frightening me, despite the doctors saying to give it time.  A big improvement is that he is able to lift up and curl both legs (so his right leg is coming around now which is great).  As far as him being disoriented, that is a bit better than yesterday as well.  So really, it's just going slow...really slow:(  I miss him terribly and it feels like he's lifetime away from coming home and life being normal again, but I know that isn't the case.  I'm just trying to take it day by day and cope the best I can.  Please continue to think good thoughts and say some prayers.  I know he'll get better, but his family and I are just so anxious to have him back.  I hope I have some more stuff to update you on tomorrow.  Oh, and people, please continue to floss your teeth...a lot of you seem to be misunderstanding that flossing might have been the cause of this infection ONLY because Will has a hole in his heart.  If the hole wasn't there, his lungs would have filtered out any bacteria before it went to his brain.  The antibiotics are keeping him safe now;) On that note, I am off to bed...night night love, Marci and fam...

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March 2, 2006

Hi, Today was a bit better:)  Donna and I went together to see Will, and boy does having the support of my sis help big time...I felt stronger even before walking in;)  I'm so thankful for my family right now, as you all can imagine.  Will was a bit disoriented as the usual has been, but really, he is also quite with it a lot...so...it isn't that bad.  What I did notice was how strong he was today.  He is getting 3 solid meals a day now...and while he is soooo wanting more water all the time (he is on fluid restriction to help reduce the brain swelling), he  is definitely just improving over all.  The best part of the day was physical therapy.  2 men came in the room and helped turn the bed into a chair and put a stool under Will's feet, forcing him to stand up!  Oh it felt so dang good to see him upright and hear him be HAPPY while doing so.  He couldn't obviously support himself since his right arm and leg aren't working much yet, and he still can't see a thing, but he was able to just stretch with their help and feel somewhat human.  There's something about seeing him upright during therapy that made me so optimistic and just beam with excitement.  He's going to get better eventually...and today helped me actually see that.  He was able to turn his arms so that his palms were up...both of them...so just another small improvement, but it is something.  His muscles were starting to ache today so the stretching is good. This evening when I went back they had him strapped down to the bed so that was tough to see...apparently he was quite agitated and trying to flee the scene.  I don't know how he managed to even try...but he did and fear of him hurting himself made the nurse strap him down which stinks. It's all normal I am being reassured constantly.  I hugged him, got them to take the straps off and kissed him goodnight and was off on my way home.  They gave him some anti-anxiety meds so he was quite comfy when I left.  So...again, a mixed emotion day, but way more ups than downs.  My mom was back in town today and helped me, in addition to some time my dad spent here today....so I'm coping, I promise.  I'm lucky to have so much help.  My patience level was better today.  Hopefully each day will slowly get better...that's all I can ask for;)  I am off to bed... Night night,
Marci and fam...

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March 5, 2006

Hi, I'm so sorry that I didn't send an update out for the past 2 days.  I have good reason though...Will had a catscan 2 days ago that showed he had a bad stroke...something new...which is why he can't see...it damaged his eyesight...which is why he is blind.  The neurosurgeon called me at home to tell me right when the kids were going to bed and obviously I fell apart.  I couldn't think, speak, yet type. Since then I have learned that he can 100% regain his sight back...it can take 6 weeks or 20 weeks...we're not entirely sure.  But for now, he is blind and I am trying very hard to help him cope with this news as well as myself.  The stroke happened either during the biopsy or right after.  It didn't show up in the catscan on Monday because sometimes strokes take some time to show up which is why we weren't worried about his sight.  It appeared to be simply due to brain swelling from the abscess...but it clearly was brain swelling that cut off oxygen to the nerves in the brain that control sight in both eyes.  Will has claimed to see flashing lights so...we'll just have to hope that it is the case.  On a happy note...yes there is....he is doing well with the abscess...swelling has gone down considerably so the chances of another stroke are gone.  We have been reassured big time by every doctor.  They all met with his mom, dad, and I yesterday and we all asked him questions...including Will:)  His brain is working much better...he can formulate good questions, completely his sentences without losing his thought in the middle.  He also is regaining his strength in the right side of his body.  He actually scratched his nose with his right hand without even thinking about it...which means yes, his restraints are off:)  He can sit up and push his body up...and when held with support, he can walk in place.  So...LOTS of improvements.  We're hoping to have him moved up to the 3rd floor as soon as he can walk better...and then they will fix his heart so none of this ever happens again.  The cardiologist is from Cedar Siani and has done this procedure for the PFO 30 times which is HUGE cause it's so new...and he is very very confident.  We're thrilled with him... So life will get better...we have been given a 100% chance concensus between the doctors that Will is going to regain his eyesight...it is just a matter of time.  Just when I heard about it, I could barely talk or think...so we went through the night pretty scared, not sure what to expect next.  Thank G-d the news was what we wanted to hear...that he can't have any more strokes and he is expected to still get all of his abilities back despite this temporary big setpack. Please pray for him and our family...this has been so so hard on us...I can barely take another day.  But I did sleep 10 hours last night cause I felt more strength;)  Today I'll take the kids to see him (the ICU is making an exception for Will).  We're going to put a cap on his head and I explained to Kate that he can't see.  We won't scare them we promise...they just need him right now as much as he needs them.... love, Marci and fam...

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March 5th, 2006 (continued)

Hi, Will is about the same today, but thinks he is seeing some color, like rainbow dots and flashes of light.  Please pray that his vision is coming back.  That would help him cope so much.  The kids came to visit him and made his day.  His days are just so long, dark and scary to him...and us:(  Katelyn sang to him and Zack was Zack...a light-hearted visit from him;)  Tomorrow they are doing a TEE (transesophogial echocardiogram) to look at the hole in his heart better.  In the meantime, his white blood cell count is going down everyday which is good and his therapy is going pretty good too.  He still is on a heavy fluid restriction until his swelling is gone in his brain.  My poor Will... I just want this to be over so bad...his nurse called me cause he was a mess missing us...this is so so hard:(  I miss him so much I can't even begin to explain how painful this all is.  I know he's getting better...just slowly.... Thank you for every thought and prayer...it means everything to us... love, Marci and fam....

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March 6, 2006

Hi, What a day....Will had a hard time being still and not agitated for the TEE so they were unable to do it.  It's ok...they didn't want to risk hurting him and they can't give him too much sedation or his heartrate will go down, so we must be patient.  Will and I, and the family were all disappointed, but we'd be more upset if he was hurt so...While the test will be informative in terms of closing the hole in his heart, it is not urgent by any means.  So...we'll wait another week or 2 until he is ready.  And please realize, that doesn't dictate that he has to be in the hospital in order to do the test...he can come home and go back to do the test and procedure...so it's ok.  I just hope he is well enough to come home within the next week or 2.  I'm anxiously awaiting to hear when that can happen.  The missing him part of this ordeal is so so hard.  In the meantime, I called him at 6am to give him a cheery morning greeting and he was super happy to hear from me.  Zack and I surprised him when I came to sign the consent form for the test he was unable to do.  Zack ran a toy car on his face;)hehe  (yes a giggle from me...it was very fun to "play" with my boys for a moment).  Will cuddled on him for about a minute until Zack realized he wanted to be done visiting so we left.  It was so nice to have a sweet moment with them. This evening I went back and he was sleepy so I made my visit quick to meet the night nurse.  Keli came with me...so I had support in case he was upset, but he wasn't.  So...overall a good day I guess you could say.  The nurse didn't have really any info for me from the docs.  I am hoping in the early afternoon to have some.  I hate having a day go by without any updates, but I guess no news is good news.  Please keep sending us those good vibes, thoughts and prayers.  I know we'll make it through this...just why does it have to take so long and be so painful???  Life is tough sometimes...and I just pray this is the toughest it'll ever be for us.  We miss him so:( love, Marci

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March 7, 2006

Hi, I think everyone's prayers are getting answered...today Will told me he was starting to see a little!!!  He held a purple teddy bear next to his right eye and in his peripheral vision he could see a little spot of purple and then white (which was my shirt since I was standing behind the bear).  Then when the neurologist came in, he turned off the light and flashed a flashlight at Will's eyes and he was just barely able to see a little light as well:)  So....ahhhhhhhh....that's about all I can say.  Will and I have cried happy tears today...and sad as he realizes, really realizes when he has been through.  It's all so overwhelming as I am sure you can understand. He had an MRI today that looked more closely at the stroke that caused this vision loss...it was an acute stroke, a big stroke that was right in the middle of the visual cortex in the back of his head.  The clot is gone that started the stroke (not understanding the origin of the clot, but I'll get more info on that tomorrow) and his nerve endings are healing.  Donna (Will's sis) was there when the doc came in to explain everything (I wasn't), and our main question was answered through her...."Is this fixable or healable?"  The doc said "healable.":)  He said in about 6 weeks vision should improve, but since we are already amazed at his progress, it could be faster...or heck, slower....but it will heal.  So my family and I continue to thank you all for the prayers you are saying for Will...we're eternally grateful for all of the strength you are all giving us....and we know that things are getting better because of it.  Please keep sending the prayers for us....Will is strong but also human and this is just so much...but visits from the kids and all of the love from everyone is helping him. (I took them both today and they had a really nice visit with him...it was the first time in a while that all 4 of us were in a room together alone.).  We miss him so....and he misses his life so much...but it is getting better.  Today clearly is the sign that we've needed.... love, Marci and fam

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March 9, 2006

Hi, He saw me:)  They pulled open the curtain in his room and he YELLED "Someone get me my glasses, I just saw that, I can see..." so I stumbled over the cords that surround him and put his glasses on his face, and then he felt my face and said "I see you":)  He even knew I had my hair down (I didn't believe him when he said he saw me;)until he said that.)He said he saw my whole face for a quick moment and then his eyes adjusted to the light and he couldn't see again....it's all really good and normal.  Being the sweety he is, he of course said I was beautiful...and by this point I and all of the nurses in ICU were crying.  It was the best sign ever...and tonight he is seeing shadows according to the night nurse...so little by little, just like the doctors are saying, his sight will come back.  It just comes and goes for now and mostly with bright lights.  Have to have patience...sooooo hard.  I'm glad he saw me as his first sight:)hehe and not a strange nurse...it was so awesome to experience that with him.  So needless to say, his optimism is sky high right now.  Oh and the irony of it all is that 2 minutes before it happened I put healing rocks in his hand that were given to me by 1 of his employees...talk about quick action! So obviously that was the best part of the day.  Dr. Dudley (the initial neurologist who saw us in the ER) came in to review him and was happy, so was Dr. Chan (the neurosurgeon...he nearly fell over, and yes he teared up when he heard Will saw me).  It has become the concensus that they'll wait a couple of weeks to do the TEE (test on his heart) so that they have the optimal level of antibiotics in him.  They did an ultrasound of his legs that came back clear (no clots) and so, they feel it is safe to wait. In the meantime, he is doing a lot of physical therapy.  Once his left leg stops spasming it should be easier for him to walk.  The catheter was taken out today;)  So again, slowly but surely we are making progress.  He was so tired from today's actions that he was asleep just now when I called. So, even though Katelyn is really starting to miss him, I feel good about things.  I wish I could speed up time...she needs him home:(  Soon I hope...I hope I get answers about that soon.  For now they just don't know when.  I am just glad today he had a good day. love, Marci and fam

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March 10, 2006

Hi, Will had another really good day:)  He saw me again:)))  The amount of sight he had today was longer and a bit more than yesterday.  It was nice to "share a glance" with him again.  Gosh, I swear I am crying as I type this...  I miss him...and it's just nice for him to see me again.  I hate this whole ordeal so much...it's agonizing.  But today he saw a bit of Katelyn too...and had an hour long visit with the kids (thanks to M&M's and tv they were calm for that long) and it all just made our day complete. On a yucky note, he managed to spice things up last night with a migraine.:( Thankfully it was just a migraine...no side effects, no more strokes...but it was not fun for him.  He's feeling pretty wrecked physically as you all can imagine.  We've pretty much decided that all of his walking and movement yesterday probably caused a great deal of stress (since he hasn't had that much movement out of the bed in weeks), thus the migraine, but he IS ok...  They are going to do the TEE test on Monday for a different purpose (unrelated to the hole in his heart)...to make sure he doesn't have any infections in his valves or anything.  His white blood cell count was slightly elevated today so that is why they are checking.  All of the doctors are reassuring me that they are simply monitoring him to make sure he is safe...so I feel pretty at ease about the test.  They will do the TEE (transesophogial echocardiogram) again in 2 weeks when they look at the hole to close it.  In the meantime, if there is an infection there, they can just alter his antibiotics slightly to cover for it.  So just continue to think a good thought for him...;) He is getting much better everyday.  The sight is the best part obviously, but really, all around he is improving.  I hope all of you know how much he appreciates the love and support...as do I. I am off to bed...so tired... love, Marci and fam

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March 11, 2006

Hi, Today was rough...  Will woke up a mess emotionally and partially due to the spasming in his left leg...so he was given Vallium which made him very loopy.  He was finally alert and himself this evening.  He was really out of it sleeping and talking nonsense all day so I really couldn't define any sort of progress today.  They also put his catheter back in since he was having issues not being able to go last night.  My poor hubby...what a freaking mess.  He said he couldn't see anything today:(  So yes, not a good day at all.  I'll be praying a lot tonight...so worried about him:(  He told me not to worry, but gee, how the heck CAN I not worry?!  Anyhow, I hope tomorrow is a better day.  I feel like it will be...I hope I am right...the doctors have warned me how things related to the brain are very up and down.  So tomorrow can't come soon enough... love, Marci and fam...

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March 12, 2006

Hi, I'm thinking we're heading onto the last 10 days or so of Will's hospital stay (we are probably getting that fixed next week sometime and then he can leave and recup some more at rehab before he finally can come home).  So that kept he and I going today.  We've put that number in our heads so that we have a goal in mind mentally of how much more we have to endure of this. Today he was able to see a little bit...he saw his mom and I a little, and more importantly was very upbeat.  The kids came and played "Pretty Pretty Princess" with him (for those of you who know this game or don't even, you can gather by the title, it isn't exactly a man's kinda game, but Will was ecstatic to do something with the kids to take his mind off of everything.).  When I came back later in the day, he and I listened to music and just enjoyed eachother's company.  Really, there isn't anything to report other than that...good spirits and a bit of eye sight (not as much as the other day, but some for sure)...so it was good for us emotionally. Tomorrow is the TEE so think a good thought...hopefully his heart is just fine other than that hole, but like I've said, if there is any infection, antibiotics will take care of it and most likely are.  I'll keep you all posted as always... love, Marci and fam

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March 13, 2006

Hi, I am really tired...Zack was sick today with a fever...so I am pooped and apologize if I am not as thorough... Will's TEE went really well.  His heart is great...no infection or clots anywhere:)  So now what they did tonight was another catscan on his brain and one on his abdomen to be sure there is no infection anywhere else that could have caused that stroke (They want to be sure it was simply due to brain swelling and nothing else).  I'll know the results tomorrow.  The hole in his heart is microscopic...so it truly was a freak thing that the bacteria just managed to get through.  They couldn't even see it during the TEE without blowing microscopic bubbles through it.  It obviously still needs to be fixed since bacteria still managed to get through. Tonight he had another headache...not sure if it's a migraine, but whatever it was, it'll be on the catscan if it caused any problems which is good cause we'll know. So we know today the white blood cell count is going down, but inflamation is up...the catscan will hopefully explain that.  We know his heart is ok.  AND, best of all...if the tests come back clear, Will is most likely going to rehab next week...early in the week. I'll know more tomorrow.  Thank you so much as always for the sweet thoughts and prayers.  Night night, Marci and fam

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March 14, 2006

Hi, I actually wasn't going to send an update tonight cause I am seriously drained from everything, but since I don't have a moment of sanity to return calls, I know this is important...so here I go. Today was a really mixed day.  I went to see Will today (yesterday I couldn't since Zack was sick, but he's better today so I left him and K with my mom).  Will was really doing well today...saw the doctor's hand when it was in front of him (part of the hand) and was just really in good spirits again overall.  They put some weights on his left leg to keep it calmer and it definitely helped.  The one thing I was a little concerned about was that he is still kind of "out of it" which is normal, just scary.  I asked him what he had for breakfast and when I guessed "scrambled egg," he was frustrated cause he knew that's what he had but for some reason he couldn't find the words in his head to say them.  Dr. Dudley (the neurologist) said not to worry, things are getting better and he was happy with his progress.  Then tonight hit...Will's dad went to see him and when they woke him up to tell him his dad was there, he was VERY disoriented, abnormally so...so they did an emergency Catscan to see if anything was wrong and it came back fine.  I was scared big time for a moment there:(  The conclusion that they have drawn from the extreme disorientation Will is having, is that it was from Adavan (an anti-anxiety drug).  So...we hope that is all it is:(  The last time he had this extreme disorientation was on Sunday when he was last given this drug...so that is how they are drawing that conclusion.  We are clearly done with that drug and hope he'll be better now. I went back to see him tonight again at 8ish and he was sleepy, but coherent enough for me to explain to him what had happened.  He made me promise he was safe:(  I feel like he looked better this evening, just that he is very worn out.  He was more with it though mentally...so....it was just a scary evening and I am tired now.  Tomorrow will hopefully continue to show progress...it's just a bumpy road to recovery and I am trying really hard to bear with it.  Everyone's love and support helps so much...I know I say it each night, but really, I couldn't get through this without everyone, so thank you for all of the love.  Night night... love, Marci and fam

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March 15, 2006

Hi, Today was good:)  Will wasn't disoriented at all.  It was quite amazing to be honest.  I took Katelyn to see him for over 2 hours and he was with it 100% of the time.  He doesn't always remember stuff or some people, but he is with it overall.  Dr. Chan (the neurosurgeon) apparently was quite pleased with the catscan from last night, so to be honest, that was the best indirect news I have heard in a while.  He's been the doctor all along that has scared me since he is rather brutally honest and not very optimistic, so hearing he is happy about anything IS good.  Also a big big thing, Will was able to see light and dark with itty bitty bits of fragmented vision pretty much all day.  The real only downer today was that his left leg is really making him nuts from the constant involuntary movement and since he can't take Ativan to calm him, he is having trouble coping with it.  I asked the night nurse to weigh it down with a weight like they did yesterday so I hope that helps him be comfortable tonight.  Apparently making the leg fatigue is the best medicine naturally for it.   So lets hope tomorrow is even better for Will.  Today was the best day he's had thus far, so I am praying it is the start of some more progress for him. love, Marci and fam

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March 16, 2006

Hi, Today was better again:))  The stats are that his abscess is shrinking, infection is going away, swelling is going down...and the light/dark vision is for the most part consistent and he is having the spots of vision from time to time.  The spots of vision range from a spot to a full face...Will said it's about 20% sometimes...so pretty weak, but hey, gotta start somewhere.  Anything vision to us right now is amazing and quite appreciated.  His leg also looked a tad better to me today:)  All of the doctors are encouraged by his progress and they are still aiming for a Monday hospital release date to the inpatient rehab center in Northridge.  Tonight they put him back on his migraine preventatives (he has had so many migraines in the past week, I have lost count, but I believe he had 2 today...he swears they are not that bad thanks to amazing pain meds...but pain meds are not good for the whole disorientation thing, so hopefully his preventatives will kick in soon).  Tomorrow they are starting him on blood thinners, but a very very low dose.  That is actually the best news of the day because as Dr. Dudley explained, the only way to protect Will from the hole in his heart is to have him on blood thinners for life or to close the hole.  By doing thinners, it is a very smart and safe short-term solution.  I hope his body handles them well tomorrow so they can up the dose to  a safe level for him to leave on Monday.  Until then he will remain in ICU most likely since he really needs immediate attention due to the vision loss and loss of coordination.  His spirits are still up...he is obviously losing his mind missing the kids and I (and the dog...lol), but he'll be home soon...probably in a few weeks.  I'll get more info tomorrow from the rehab about the program there and what to expect.  In the meantime, I know everyone is worried about me, but I swear I am doing ok.  My kids are being so good and family has been so supportive.  I am coping, just having some really hard moments missing our normal life, but really, overall, I am finding out what a strong person I am and what a strong family I am a part of. Thanks again for the sweet daily thoughts and love.  We feel so blessed to have so many prayers being sent our way;) love, Marci and fam

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March 17, 2006

Hi, Today was good again:)  Kate and I spent 2 1/2 hours with Will and he was really doing great.  When we got there, he was sitting up unassisted in the bed talking to the social worker.  I was shocked that she had the guts to stand in front of him cause with his leg spasms...well that is just pretty risky.  I held Katelyn close to me and just stared at his leg in disbelief...the meds they gave him instead of the Ativan are working.  I forgot the name of what he's on now, it's in the Ativan family, starts with a "C" or a "K".  Anyhow, he sat there completely calm and not falling over or anything, not needing assistance:)  The nurse came in at one point and had Will lift his left leg and point and flex his foot and he did it:)))  It spasmed a teeny teeny bit. After the social worker left, the 3 of us hung out (Zack was home still a tad under the weather...he'll go tomorrow for a little while).  Will held Katelyn's hands in bed while she jumped up and down in the ICU bed (what a sight) and I am not kidding, but his spirits are so high that he was dancing around with her (the top half of his body since he was sitting).  In any case, it was just really good.  His vision is still pretty much not there...just some light and dark with spots of clarity every once in a while...but again, our hopes are very high cause the doctors are not waivering on their 100% prognosis of it coming back.  As Dr. Dudley put it to Will, either you have a little which means it will come back or you don't and it won't.  So...we're optimistic, but obviously quite anxious for it to come back. So really, I can't complain...he is improving slowly but surely.  Tomorrow I will be taking a tour with Will's mom at the rehab in Northridge.  I can't wait to learn more about it.  He is transfering on Monday or Tuesday.  They have his paperwork and he's doing well...so we'll see.  I hope it all goes smoothly for him. It feels so good to e-mail good updates...I am so excited that he is really getting better...I have lots of faith;) but I miss him a lot and the end of the day is hard as I get tired and reality hits, so I need to sleep...please again forgive me for not returning calls or e-mails.  I swear I will eventually get back to everyone and smile with every message that I get. love, Marci and fam...

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March 18, 2006

Hi everyone, OK, so the past few updates have been really good, so like everyone has been saying, there are bumps in the road to recovery...and well today had bumps.  The kids and I went to see Will this morning and ICU decided a month of no problem visits with the kids, to uphold its policy of "no kids allowed" so it was quite distressing until they finally agreed to let us meet with Will in the hospital chapel.  To make a horrible traumatic story short, Will got sick when we were in the chapel and it was a nightmare that ended ok.  The kids and I were just a bit overwhelmed to see Will throwing up:(  The doctor thinks it was just something he ate...and so does he.  He recovered fine and was back to himself in time for my afternoon visit with him, but after fighting with the head nurse to let us see him and then for him to get sick...ughhh, what a morning!  The kids and I are ok now.  Will even called Kate to reassure her...so all's well that ends well...  In the meantime, visits with the kids will be not really allowed unless Will is ok to leave his room for a quick one maybe on Monday before he leaves for the rehab.  I really don't know how this will play out so I am relieved we have had so many visits before today knowing there's only a couple of days left before he is out of there. The rehab...Will's mom and I went and were impressed:)  It is a neat place...a far cry from ICU.  Will can have visitors, including his kiddos at ANY TIME FOR ANY LENGTH OF TIME:)  We are being encouraged to be a big part of the rehab process for 2-4 weeks depending on his progress before he can attend on an outpatient basis.  Everyday from 8am-4pm they will work with him on physical therapy, occupational therapy, cognitive therapy...you name it, they do it.  He'll have an amazing staff of doctors and if need be, we will hire a nurse to tend to him personally if he's having a hard time due to the lack of eye sight.  That today was about the same...light and dark with visual spots here and there from time to time...all normal.  His sister, Donna, is helping get some specialized neurovision therapy started for him as well.  He'll start seeing a neuro opthamologist soon too...so, lots ahead for Will. So we're ok;)  Tuesday seems to be more likely for the transfer to the rehab since the insurance stuff might not be finalized till Monday.  We'll see...in the meantime, thanks again for all thoughts and prayers...we're all grateful as always... love, Marci and fam

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March 19, 2006

Hi, Today was a quiet day.  Will woke up extremely agitated/frustrated/upset...as I am sure you can all understand since he is very much aware of everything:(  So they sedated him and he slept all day.  Oh, an interesting thing happened while he was awake in the morning.  They sat him up in the chair and he managed to get out of the chair and back into bed on his own.  Freaked the heck out of the nurse who was tending to him!!  While it was dangerous and thank goodness he's ok, I was amazed and thrilled that he was able to do that!  That IS a good thing...just too risky and I pray he doesn't do something like that again without someone there to at least spot him. Other than that, I was there with friends of ours for a couple of hours and every once in a while he'd attempt to wake up, but the drugs won...he couldn't.  So I missed him a lot today...but was glad he wasn't suffering today. The nurse who caused me so much grief was apparently in hige trouble and every nurse on staff knew about it and apologized to me for the drama she caused.  The kids ARE allowed in ICU, especially Katelyn who isn't a baby by any means.  I've decided to just hold off on any more ICU visits though since he is so close to being in the rehab.  We'll all go together to help welcome him there and help him adapt.  Hopefully tomorrow if he's ready and all of the paperwork is done. I'll keep you all posted as I always do;)  And thank you for all of the prayers xoxo Love, Marci and fam

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March 20, 2006

Hi, It has a been a month now that Will has been in the hospital.  What a month...  Like I said to Will today though, a month ago we had no idea what was wrong, just that he had a hole in his heart and a mysterious spot on his brain, and he was regressing quickly.  Today we know what is wrong, we are on the mend...and well, things are going to heal very slowly but they will heal. Dr. Dudley (the neurologist) ordered an MRI for Will today to see if there is a reason for his nausea.  Apparently he felt a little nauseous this morning, and since he got sick when we were there this weekend, the doctor was concerned.  I still don't have the results from that test and won't until the morning.  What I do know is that Will's white blood cell count is still going down (so infection is going away), and his swelling is slowly going down as well.  So that is good stuff:)  Today he was able to see light and dark a bit more easily.  I moved myself from side to side in front of him and he saw me (the silhouette of me, not me).  He couldn't say how much he saw of me, but enough to know it was me and I was moving.  The image seemed to stick in his mind for a moment or so after I moved away which was strange, but I guess it's just how it all heals...slow and strange.  The rehab is going to wait a couple of days for Will.  Instead of it being today or tomorrow, it is now looking more like Wednesday or Thursday.  The doctors want to have Will stable on a more low key narcotic for the headaches than what he has been taking, and they want the nausea under control.  I actually feel really good about that cause it scared me to have him go from ICU to an intense rehab.  Instead he will move to DOU (Definitive Observation Unit) which is 1 level down from ICU in terms of intensity, for a day or 2 and then will go to the rehab. So that's all I know...he is doing ok emotionally as to be expected.  All of everyone's love is keeping him going.  He just wants this over with now and it can't be so it's frustrating and upsetting.  Tomorrow will hopefully bring some more reassurance that he is ready to leave for the rehab.  I'll send an e-mail as soon as I know about that test and have a moment... love, Marci and fam...

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March 21, 2006

Hi, He is leaving for the rehab tomorrow!!!:)  The MRI results were good...he is stable on the headache meds that are ok for rehab....and no more nausea (crossing my fingers that it won't come back).  I spoke to the neurologist and the neurosurgeon who both said Will is ready.  He will be on IV antibiotics while he is there, in addition to the cortizone for the swelling and aspirin to thin his blook to protect him...so yes, he'll be medicated but not too much, so it won't interfere with his ability to rehabilitate.  We decided to hire a nurse aid to be with Will 24/7 in addition to the nursing staff at the rehab just so that he really is safe while he's there.  It's just those moments when his memory is a bit wacky and I am scared that he'll try and get out of bed and fall, so having the extra care temporarily will be worthwhile for our family's sanity. As for developments, the vision he said was a bit lighter today.  He's seeing colors where there are no colors...the neurosurgeon held up a red phone and Will saw orange and blue...so that isn't good, but, obviously something is going on in there visually cause he can tell the difference between light and dark....so time and patience...oh I am so not good at patience.  When the occupational therapist came in today we had Will hold a pen in his right hand and he was able to confidently and write a little!  So that is HUGE considering the right arm wasn't working at all a couple of weeks ago.  That really was my happiest moment today:) After his physical rehab this morning he said he was ready to walk some more, but since he's in ICU, you only get 20 minutes of therapy a day.  He's so ready for rehab;)  So...tomorrow will hopefully go as planned and he'll be leaving Los Robles Hospital in the morning and off for some good healing he'll go.  Zack and I are joining him, and Katelyn will come and see him on Thursday afternoon (she's going on a playdate tomorrow and didn't really want to go...clearly she's feeling quite secure;).  Please think a good thought for Will.  He needs every bit of strength to work hard and come home!!!  I am so hoping he'll only be there for a couple of weeks.  I should know more about all of that after he is assessed, and well after some time. But yay progress progress...I'm excited for him to be out of ICU:) love, Marci and fam

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March 22, 2006

Hi everyone, He is out of ICU and in the Northridge Rehab!!!:) YAY!  It was a chaotic morning, getting last minute re-evaluations of Will's latest MRI (all went well), figuring out what time to get the private nurse's aid there, cleaning out his ICU room...but at 2:15 his ambulance was there to get him, and by 4:00 Will had on a new wristband (I think I'll trash the ICU one) and ICU is hopefully behind him for good.:)  We've been a bit emotional today as we've been taken out of our comfort zone.  It is so weird to think of ICU as a comfort zone, but we knew the nurses, the surroundings...it's all new and different now, but definitely in a good way.  I hope his stay at the rehab will benefit him greatly.  So far so good...he has a nice male roommate and his private nurse, Benjamin, seems great...so we're doing ok here. Tomorrow all of the doctors will assess him for their recovery methods and such.  An MRI will be done for them to have...so...I'll keep you all posted. Thank you for so many sweet thoughts today.  We're hanging in there, we promise.  Will's spirits are ok...waivering since his vision was worse today, but like I have said, it's gonna be shaky for a while.  We're praying hard and being optimistic.  The kids can't wait to see him so tomorrow we shall! Love, Marci and fam

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March 23, 2006

Hi, I just got off of the phone with Will.  He is trying to be strong through this, but it gets harder each day away from home.  Today was hard on him...they re-did an MRI, EKG, ultrasounds in the legs...you name it, they re-ran every test in the book on their own equipment.  Every test from what I have heard remains consistent with Los Robles' tests.  Things are getting better extremely slowly.  The hardest part of yesterday and today was that Will was not seeing ANYTHING...not light not dark...and it has been depressing.  Katelyn and I spent a couple of hours with him, and right as I was walking to the car in the parking garage to leave, he called me to tell me he was starting to see light and dark (he could see the light come into the room when they opened and closed the door), just suddenly, just like that.  I don't mean to be dramatic, but I put Katelyn down in the parking lot and just balled... lots of crying...and I was happy, so I felt ridiculous...I just am over the top emotion wise now.  But no I didn't traumatize Katelyn...but I swear, this has been SO hard. I am so tired from the emotions of the day and the transfer to the rehab just in general...so I am off to bed.  I am looking forward to tomorrow, when the real rehab starts.  While today was good...it was a lot of "assessing" rather than "doing"...so tomorrow will be key in Will's recovery.  I'll be there most of the day...in the morning with Z and in the afternoon with K...so I'll hopefully have lots of stuff to post. One other interesting thing was during speech therapy, the therapist found that if she gave Will the first syllable of words at the tip of his tongue, he figured them out instantaneously:)  So...slowly but surely we'll fix him... I know I sound repetitive by thanking you each day, but the prayers mean so much to Will and I, and our entire family.  Thank you for so much support.  love, Marci and fam

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March 24, 2006

Hi, So I have decided that I hate doctors:(  Will was having a great day...occupational therapy went amazingly well...Will dressed himself easily from head to toe:))  He walked well, he had bits of sight on a few occasions today, saw Katelyn and Zack, ate well.... And then a doctor we have never met comes into the room and tells Will (while no one was there with him other than his private nurse) that his sight may never come back.  Seriously, I have never been closer to actually wanting to kill someone as I was right then and there when Will called me hysterically crying.  What the hell is wrong with that woman?!  She didn't even give him facts, just a blunt statement.  Here the guy is seeing things from time to time, so clearly he isn't blind...he might not be having anything consistent yet, but today he recognized a coke machine and 2 chairs AND saw other stuff as well.  Anyhow, I think I calmed him down (with a lot of help from our friends and family).  I did a lot of research on Will's stroke.  I learned why he is healable and how.  There are 6 quadrants of the eye...upper, middle and lower on the left and right of each eye.  Will is seeing little bits out of almost every quadrant.  Eventually the quadrants that he is seeing out of will stick, so the vision will stop disappearing.  It just takes time.  That's where vision therapy will come into play in bringing the other quadrants back.  Anyhow, without getting too technical, I explained this to Will and it did him well;)  I explained that we are no longer going to listen to anyone's opinion on his sight coming back because blind people don't see and he IS seeing.  Maybe not consistently, but he IS seeing.  And color today:)  So...can you just feel how aggrivated I am?!  I didn't cry when Will called me, I got furious.  I have no idea who the doctor was and neither does Will, but you can bet she is going to get more than just a piece of my mind in the morning.  Arghhhhhhhhhhhhhhhhhh Anyhow, today was great other than a migraine that started the day and a terrible doctor who used horrible bedside manner with Will...  So we're gonna say it was a good day and just pray that tomorrow brings Will more sight so he can feel better;)  And he'll get a haircut thanks to mom's best friend:)  So he'll look better too! I am off to bed...I am officially whooped... love, Marci and fam

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March 25, 2006

Hi, It was a better day by FAR!  I spent most of the day with Will.  He started out the day upset about his vision again...and within the hour he was wheeled out for an MRI and saw all of the lights on the way, including the exit signs, and then he noticed the big red sign on the outside of the MRI room (the caution, do not enter one...) and asked me what it said:)  So he saw colors, lights and was recognizing based on bits he could see what things were.  Then mom's friend Toni came (oh we love Toni sooooo much for coming today!!!!) and she fixed his awful hair;)  He looked like Travis Barker and Kramer before she came...;)hehe  He looks so much better now!  And after she cut his hair we all hung out on the balcony (his mom, his cousin Steve, Toni, the private nurse, Will and I)...and suddenly he started seeing things...his mom's watch, his mom's pants, then his mom, then ME (I had to boot his mom off of the chair she was sitting in...it was the magic spot for vision...we all took turns sitting there and he saw ALL of us).  His vision is working almost like a snapshot, where a still image sticks with him for a few seconds until the next image registers.  It's really bizarre, but nonetheless, comforting!  Later on in the day he saw a sign on the door in his room that had his name on it and pointed it out to his sister.  So...between the vision and his really great job at physical and occupational therapy, he was on a roll today! I made a big stink with the nurses about the ordeal with the doctor last night.  I hope it won't happen again.  For today, I can safely say, it was good:)  More good news tomorrow please!  I can get used to this...I hope it continues!! love, Marci and fam

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March 26, 2006

Hi, Not much to say...today was pretty good:)  Will saw not quite as much as yesterday, but he did see quite a bit.  He is describing his vision as parts of quadrants...kinda like an "S" shape but backwards and just very minimal.  In any case, his spirits were pretty good and he is getting better slowly.  He had LOTS of visitors today which was REALLY good for him.  I'll be talking to the doctors tomorrow to get more info.  The weekends are slow therapy wise, especially today, where I was the only "therapist" he had...so we worked on walking together, the speech therapy and the occupational therapy.  He did well from my professional opinion (haha).  Tomorrow will be more informative. Love, Marci and fam

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March 27, 2006

Hi, I think I am beyond exhausted;)  Today was a good day for Will again though.  He woke up seeing and it was continuous, not like the still images he has been having.  He could see his parts of his feet moving:)  And he read part of his lunch menu "potatoes" and "vegetables."  So...big big progress.  The sight lasted for a few hours and it was minimal, but the fact that it was not just images was just mind blowing to us.  I spoke to the rehab doctor today who has basically put me in my place telling me to wait until Wednesday for any info when the team finally meets to discuss all assessments.  I have to say, the amount of patience they expect me to have is almost impossible to have:(  He simply told me that all of the tests that they have re-ran don't show anything new and are completely on the same page as the tests ran at Los Robles, so that is good. I'll obviously have to wait...so...until then... The kids and my mom had a wonderful visit with Will.  We all just enjoyed it so much:)  It's hard to say goodbye and be counting endless days, but really seeing that he is getting better makes it worth it.  It's just hard...I know I say that a lot, but oh...it is SO HARD... I wish I could fast forward this awful time, or better yet, erase it so it never happened.  I'm off to bed... love, Marci and fam

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March 28, 2006

Hi, OK, for the record, I can not believe it is already March 28th...where the heck has time gone?!  Ughhhh  We're hanging in there, but geez...what a deal.... Today was good again;)  I took the kids to see Will this morning so we were there for his speech therapy and his physical therapy (2 sessions).  The best part of the time we spent there was that we were able to be a part of the therapy.  Katelyn held Will's hands as he walked from side to side (and so did Zack).  Zack also counted leg lifts for him...Will smiled huge:)  The kids watched him walk between parallel bars and since there were 2 sets, they imitated him on the other set while he marched and did some other stuff.  For speech therapy they had him fill in the blanks to sentences like, "This house is not for >>> (sale was the answer).  Katelyn kept chiming in answers which was cute and funny.  Will did well too;)  We were also there for the infection specialist to come in and check on Will.  They'll be doing bloodwork on Friday to see what's going on, and most importantly, tomorrow is the "team meeting" which is when all of the different departments meet to discuss Will.  I'll be curious to hear how that goes.  One of the physical therapists asked how I felt about Will getting a home pass for the weekend.  I obviously said if it was agreed that he was safe to come home, I'd be ecstatic, but otherwise, I understand.  So, that will be discussed tomorrow as well. I thought Will's progress was awesome today physically.  His walking is really getting good.  He used a stationary bike and did well for a few minutes until his left leg started getting clumsy.  The most amazing thing that happened today was vision-wise.  For the first time, he saw in the evening.  He said it was a teeny spot of live vision in the center of his eye.  He saw his nurse's hands and eyes.  He watched his body wiggle under the blanket.  I was excited to be on the phone with him while it was going on:)  So...that was huge.  The doctor that caused the chaos from the other night came in to check on Will...apparently that was the neurologist.  She was very happy to read about Will's vision progress and told him it was very encouraging and to just give it a long long time to come back more fully.  We're trying...so much easier said than done.  It's hard being with him with the kids and not having him see any of us.  I am thankful that he is having some vision...we just wish it was more than a few minutes or hours and more than a spot...and it just fluctuates so.  It's enough to make us twitch, not that we already aren't. Anyhow, so I am done blabbing now...it was a big day obviously since we were there for therapy time.  Tomorrow I'll probably miss out on that since Kate has school and Z has mommy and me with me...hopefully I'll have more info from the team meeting. Thanks for such sweet thoughts and love...and of course for every prayer. :) love, Marci and fam

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March 29, 2006

:)  April 12th has been declared the tentative date of discharge.  Will is adamant for the 11th since it is our anniversary and I know they'll agree to it...so, really it will probably be the 11th.  We'll just play it by ear and see how he is by then. So that was the big news of today!  The team meeting basically let me know that he is improving and what the goals are from each therapist.  I think they are all somewhat easy to attain.  His sight was a bit worse than yesterday, but really quite similar...bits of consistent live sight for the morning and then nothing other than light/dark in the afternoon.  This evening he noticed some bulb lights in the parking lot when he was sitting outside with his cousin.  Apparently he practically ran down the hallway for physical therapy so I was quite thrilled to hear that:)  He's surviving...sad at times, missing us terribly, but knowing there is a day in the near future when he can come home is making it much easier on my end to bear with it.  I just want him to be safe when he comes home so I am nervous:(  I hope he'll be ok for it...I'll be talking to the doctors for reassurance! One other note, they are putting in a PIC IV in his arm instead of the temporary IV...that one will last for up to 6 weeks.  We are under the assumption that he will be on antibiotics through the IV for at least another 3-4 weeks.  That procedure will most likely be tomorrow. Thank you for all of the prayers...;) love, Marci and fam

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March 30, 2006

Hi, Zack and I spent the morning with Will.  Rehab went really well:)  He practiced walking up and down steps and that comforted me A LOT knowing the steps we have in our house. He lifted weights again and rode the bike.  During speech therapy he was able to explain how 2 things were alike and different (like a chair vs. a bed...you can sleep in them both but one is bigger than the other...that sorta thing).  His vision was so-so while I was there.  Apparently he saw more as the day went on, so...hopefully tomorrow will be better. Today he had the permanent IV put in for the next 4-6 weeks.  He said it was no big deal;)  So, ultimately not a whole lot to say today...which is fine.  I'll keep you guys posted on his blood test results tomorrow if I get them then. Love, Marci and fam

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March 31, 2006

Hi, Good news overall.  Will's blood tests came back showing the white blood cell count is going down and his antibiotics are being slowed down a bit.  He'll still be on IV antibiotics for at least another few weeks, but not as many times a day.  They didn't test for the ced rate in his blood cause the doc said since that was normalizing when Will came to Northridge, it wasn't an issue.  So good stuff:)

His sight was so-so today.  He saw Zack from the back and Kate as she ran by him (the kids were chasing eachother on the patio where Will hangs out).  He read one of the therapists' name tags too and saw the numbers on the bike when he rode it:)  Otherwise, not much improvement, just consistency going on, but yes, that is good, so I am ok...just tired and emotional wanting this to be over.  Will is feeling very similar to myself today.  We know it'll get better though.  On a sucky note, someone stole his cell phone so I had to file a report...but thanks to insurance and the file I reported, we'll most likely be reimbursed.  But seriously, I can't believe someone stole it.  We have a feeling it was stolen and not thrown away since it was in plain sight when he left for therapy and it was ON....when I tried calling him, it had been turned off.  I would SO love to meet the jerk who took it.  Oh well...just a material thing, right? So this weekend will be quiet...if I don't send an update until Monday it's because things are consistent, so please don't worry.  Thank you so much for the thoughts and prayers...we are grateful for all of it big time:) love, Marci and fam

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April 1-3

Hi, We actually have had quite an eventful few days with Will...with lots of good stuff, but some bad as well...so I'll just go in order so it's easy to follow. On Friday Will's PIC line in his arm (the permanent IV) was sore and by Saturday afternoon he was in pain from it and I mean pain:(  They did an ultrasound and saw some superficial clots forming (meaning they are close to the surface and not deep).  They swear the clots were there before the pic line went in and that the line was perfectly fine, but when I heard the word clot (knowing about the hole in Will's heart) and seeing him in agony like that, I demanded it be taken out.  They swear since Will doesn't have any occlusive veins, the clots are just "bruises" from having so many IV's in that arm.  But, I'm sorry, I'm freaked out and don't want anything in that arm even if they claim these clots are "safe."  By the time they finally took out the PIC line, it was 9pm on Saturday and I swear, it sucked:(  I was pretty traumatized since they asked me to stay in the room with Will when they did it for support.  He felt a lot better once it was out, but I spent the night at the rehab in the bed next to him cause I was so freaked out.  I woke up in the middle of the night throwing up (why not, right?!  so much crap going on and I fall apart now).  So all night long I am as sick as a dog, the doctors will not give me anything, so finally at 5am I call one of my closest friends, Keli, and she brings me Immodium.  I love Keli:)  A nurse also goes out and gets me Maalox and makes me some tea.  I throw everything up and give up...The horrible wonderful irony is that the doctor comes in at 6am saying Will can have a home pass for the day.  So thank goodness for mom and dad and the sitter we hired...somehow we all came safely home for the afternoon.  During the car ride home, Will was able to read a few numbers on the license plate on his mom's car (he followed the car I was in, which was his mom's).  He saw the colors of cars passing us...and at home he saw a picture of Katelyn, the reflection of the tv in our sliding door (since he wasn't facing it), and he saw me:)  I looked just great I'm sure;)  Blehhhhh On Saturday before things got horrible with the PIC line, Will had a really great morning with the kids and he saw both of their faces:)  Ohhh that made this whole weekend bearable mentally.  That and him coming home for a few hours.  I couldn't help but just stare at him on our couch every few minutes:)  It was great:)  He had a nap in his bed, some nice cuddle and play time with the kids on the ground in the family room, and just overally did wonderful. He left with his sister and cousin to go back to the rehab and I cried:(  It was a tease having him back for just a few hours in our comfort zone, but I did love it.  He cheered me up when he got back there.  He didn't cry at all;)  I think part of me was really worried he'd have a hard time going back, but he didn't...he was ok with it knowing he'll be home again soon. Last night he managed to somehow get enough vision to see the tv for a few minutes and hear it...meaning, he watched tv!!!!  Like he said, it wasn't by any means clear, but he could make out part of a person on the screen and hear what they were saying and it made his night:)   Then this morning when he was brushing his hair, he saw one of his eyes in his reflection:)))  He said he froze and just cursed at it to work more and was thankful it's still blue like he remembers it to be:)  I am so proud of him for being so strong...I hope this is on the upswing.  I hope no more clots form in his right arm now with the temporary IV.  They'll ultrasound it after the next one is put in to be sure.  They're also going to meet with the cardiologist again this week about closing that hole up in his heart soon so that clots don't freak us out so bad!  It's gotta be the right time for it though, so I am being patient.  In the meantime, the aspirin should be enough to get rid of the clots we hope. I am feeling better as of this morning, just woke up from a nap in fact...and slept from 10-7:30am this morning:)  So...all's well that ends well.  Can my family be the uneventful one soon please???  We are definitely getting tired of being in the limelight and would like some just good, calm, nothing going on time! LOL! Thank you for the love...I couldn't believe how many messages I had after not checking my e-mail for 3 days!  Forgive me for not writing back...I have to go save my mom from my kids;) love, Marci and fam

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April 4-5,

Hi, I didn't send out an update yesterday since the kids caught my stomach flu...yes, slightly chaotic here for about 13 hours.  Today we're all healthy and looking very much forward to seeing Will since we haven't since Sunday:(  He will have a weekend home pass for during the day so I am super excited for that. The only small update I have since I haven't been there to watch his therapy is that he told me he saw a small bolt in a box full of different nails and such, which he was supposed to be feeling for with his right hand...so he SAW it and took 30 seconds to do the task instead of 3 minutes for occupational therapy;)  His sight overall hasn't changed much in the past 2 days.  He has lots of moments of it and pretty much the same amount each time, but hours go by with just light and dark....so we're just waiting...but it isn't getting worse so we are optimistic since we've been told to be! Since I have been home, I have been productive...I found a referral for a cardiologist at UCLA who closes the PFO in the heart.  We have an appt for a consult with him on May 1st.  Even better, today I made some calls and got an appt with an amazing neuro-opthamologist for April 18th.  He is the man who heads Novavision which is the vision therapy program I am trying to get Will into.  That was huge for us since I didn't have a referral.  I pleaded my case to the staff there and got that appointment so yay:) Tomorrow I have to find out how to get my husband out of getting a PIC line in his right arm.  They are now claiming the heplock IV won't last long enough for more than a couple of pokes in the right arm...so off I go to learn all about that and figure out how to deal with it.  Will is still on for coming home on Tuesday, our 7th wedding anniversary:)  The kids and I are so excited...so hopefully I'll get all of my stuff together for him before then...working on it all...in-home therapy till the IV comes out, getting medical records for his upcoming consults, you name it...I am RELIEVED to be healthy to do all of this stuff;) I apologize for not returning any calls or e-mails...it has been really a busy couple of days with illness here.  Thank you so much as always for every loving thought and prayer.  I'll be anxious to fill you all in on his progress when I see him tomorrow!:) love, Marci and fam

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April 6-7,

Hi, Tomorrow Will is coming home for the day AND sleeping at home!!!!:)  I am besides myself with excitement:)  Basically what the deal is, is that he isn't discharged officially until Monday.  Until then, he has to have his IV meds at the rehab at 10am and 8pm.  Other than that, he is free to be HOME with us!:) YAYAYAYAYAYAY!  All of this came about this afternoon after his NEW PIC line was inserted into his right arm (vs the bad one that came out of his left arm).  So far the new line seems to be working, so I am praying really hard that it will be ok so we can continue to treat him without chaos and pain. Otherwise, I am preparing for Will's homecoming...over the weekend we will be meeting Sam, our friend of a neighbor (Rich and Kristin, thank you!!!) who will be doing light housekeeping, some cooking and most importantly, being a companion to Will while I am busy with the kids and such during the week.  He can only help for about a month, so hopefully that will be all we'll need.  It'll just be a morning thing since I am around most afternoons while the kids nap.  We'll make his position more official after we meet him tomorrow, so we are anxious for that.  Also, we are going to be having in-house rehab therapy for Will...1 of 2 companies will be providing Will with that daily.  And then we will have a nurse coming to our home to do Will's IV meds.  So, my low maintenance hubby has become quite the high maintenance man;)lol  I am just ecstatic, as are the kids, to have him come home. So I'll keep you all posted, but as of tomorrow, my sweety is home!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  And I am so so thankful for everyone's prayers that have helped bring him here...I only can pray that the worst is over now and we can finally live our wonderful life together as a family once again, as we heal slowly over time.  love, Marci and fam

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April 8-11,

Hi, Sorry I haven't updated in a while...it's been so busy...  Will IS home:)  Right now a nurse is downstairs with him giving him his IV antibiotics.  We're doing that twice a day.  Today we'll see if his home therapy can begin...waiting for insurance to approve... So we're here and surviving together as a family now.  It's nice having him home, just really still so hard since he can't see...he has some vision sometimes, but just not enough to survive yet.  April 18th is our appt with an amazing neuro opthamologist.  While Will's prognosis is still really good, that appointment will be much more informative for us than anything we can hear from any other doctor...so we wait. Thank you for all of the love and prayers...today is our 7th wedding anniversary and we couldn't be more thankful to have eachother today...and ironically it is raining, just like it did on our actual wedding day...so it seems extra special in a way... I promise I'll try and send more e-mails, but for now know that you can all call anytime...Will is ecstatic for any phone calls or visits...so just bring it on now that he's home!:) love, Marci and fam

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April 11-25

Hi everyone, I'm so sorry I haven't updated anyone other than people who have called, but my internet has been down...a wire got chewed up by our puppy (stinker), but we're up and running again so here's the latest. We had the appointment with the neuro opthamologist last week.  It was a bit disappointing because we learned more about what the abscess had done to the visual cortex and that as a result, Will's vision is not 100% healable.  It wasn't a stroke, it was more of a chemical reaction in the brain.  I swear it was Greek listening to the doc talk about it, so the most simple way of explaining it is that there has been cell damage that can't be reversed with medical science right now in the visual cortex (we have learned since about clinical trials that are going on though so there is hope).  He will be partially blind though until we can find those options or if a miracle can happen for him.  So far all he has gotten back is his central vision in both eyes...but one is blurry still.  It's like looking through a doughnut...so no peripheral vision at all.  The basline tests they conducted were hard on us...brought it all to reality for sure.  BUT, the doc said it is very early for Will to be having the quality of vision that he is having, if any at all...that usually he waits at least 6 months after a stroke or whatever causes the vision loss before even seeing a patient.  We snuck in the back door with this appointment by scheduling it with his office and not through the vision therapy center. The doctor said he expects Will's vision to have significant improvements over the next few months, so here we wait and wait...it's hard:(  It won't get back to 100% like I said, but it can get well enough to drive someday maybe.  Our next appt with him is July 18th.  At that point we hope little pockets of vision will have returned for them to do therapy on.  For now there is nothing.  We learned on a semi-bright note about how lucky we are that the abscess wasn't a few millimeters over cause Will's prognosis could have been catastrophic to put it mildly.  We are lucky and we know it.  We know we haven't lost him, his soul, his ability to walk, talk and think...and he can see, just a very very little bit.  Enough to see our faces if we are about 8 feet away and enough for him to read signs and such when we are driving, but not enough for him to drive.  It's so hard for me to do these updates...cause it feels so down to type it out, but if you look at Will and live with him like the kids and I do...he is getting better.  Just slowly... His ability to find his way around the house (known as his "mapping" ability) seems to have improved overnight.  He found his way from the bed to the bathroom without me this morning and got back into bed:)  So...all in due time... In the meantime, he has started going back to work...not plating parts obviously, but Will has been dealing with Customer Service and quotes and such.  I'm so proud of him:)  Just a few hours a day and not everyday. We enjoyed our Easter immensely...we had a picture taken of the kids with the Easter bunny...oh I have SOOOO many pics to update our family site with, it's ridiculous.  Will went with us to the mall to do that.  He saw the picture after the fact and enjoyed it too:) So....what a crazy life it is...harsh and unfair...but we're surviving it cause we are together now.  I missed Will so much...I do feel like I have him back, just wish I could help make him perfect again.  Thanks so much for geez...the 200+ e-mails of love...I can't believe I had more e-mail rather than junk mail.  I'll try to do weekly updates or ones as developments occur. love, Marci, Will, Katelyn & Zack (and Cassie Belle..."aka bad doggy who ate my computer wire")

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June 2nd,

As of today, Will's abscess is no longer being called an abscess, it is now just a scar:)  His PICC Line in his arm was removed this morning as well:)  He looks wonderful and is doing really great.  His hair has grown back completely and his limbs all work perfectly.  No twitching in his leg and no weakness in his arms.  Cognitively he is almost 100%...he will be 100%, there is no doubt amongst any of the doctors we have visited.

His vision...it's coming back very very slowly.  It is becoming very functional though, the tiny bit he has, so we're happy with his progress.  He can play on the computer, watch tv, and read:) The one thing he is still having trouble doing is walking around without assistance.  That is really the hardest part that I don't see getting any better till he gets more vision back.  At home he is fine since his mapping ability has returned, but elsewhere, he just doesn't know his way around, so he is completely dependent on me or whoever is with him.  I'll try and describe his vision though another time a bit more cause it's weird...he can see really well out of his tiny spot in 1 eye, but not out of both at the same time.  Again, will try and explain another time.  Overall I am smiling since he is getting better even though it is still quite hard for him to function.

Yesterday we had a great meeting with a neurologist down at UCLA.  He said the PFO in his heart probably didn't play a part in this whole ordeal because the lungs don't filter out infection, so infection in the blood could go anywhere in the body, including the brain, even without a PFO.  So...it doesn't need to be closed...in order to close it, since it is microscopic, they'd have to puncture his heart to make it bigger (I know...my eyes popped out of my head...yeah right, over MY dead body will they puncture a hole in his heart!).  He said that if the cardiologist was against closing it and I quote "Dr. Tobis (the cardiologist) wants to close everyone's PFO, so if he doesn't want to close yours, then don't."  So...there ya have it.  We're giving him aspirin daily to avoid any clots going through it nonetheless.

He also solved a mystery that has bothered me greatly...did the timing of the biopsy cause the stroke...meaning, if they had done it on that Friday as we had planned instead of rescheduling it for Sunday when it actually occurred, could Will's stroke been avoided....NO.   He said the act of the biopsy traumatized the brain, not the surgeon or the timing of the surgery.  He said it was lifesaving surgery (which I know) and it was done when it was done and the timing was not what cause the stroke.  So my heart can rest easier now...I felt a bit of guilt, although I did pitch a huge fit trying to get the biopsy that Friday...I just felt like I partially blamed the hospital and the doctors for waiting.  I guess I don't have to feel that way, and I am so glad for that.

So...overall, lots of questions answered.  Lots of mysteries solved.  Will can lead a normal life without fear of this happening again:)  You or I have just as much of a chance of this happening to us as he does....so I am thankful he is not in anymore danger than the average person.  What happened to him couldn't have been prevented and proper action was taken....and most importantly, he is getting better and is expected to improve even more over time.

Thank you for every thought and prayer...all we pray for now is for more vision to keep on returning so that Will can lead a normal life again...and maybe coach Katelyn's soccer team next Spring;) and lead Zack's boyscout troop someday.  Really, I just want him to not feel disabled and to enjoy life to the fullest.  He deserves it so...

M

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June 21, 2006

We're all doing pretty good here.  I know it's been forever since I sent out an update on how Will is doing.  He is doing great overall.  His sight continues to improve very slowly, especially in his left eye.  He proudly watched Katelyn graduate today...so really, can't complain.  We just need for it to get better enough for him to drive eventually and we will be thrilled!  All we can do is wait...  Honestly, we feel quite blessed to have him home safe and sound and are more than willing to be patient, as hard as it is, for him to get better.  Thank you for continued love and prayers...Will sends a very sincere thank you for that. All our love, The Hudson Family (with a proud preschool graduate!)

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June 22

And here is Will's vision as he describes it from 6 feet away. He made this for us today...