Monday

Lannette had a rough weekend trying to poo. After lots of effort she finally managed to get something to come out of her but i'll move on. Her platelets continue to improve. Her LDH (the measurement in her blood that tells whether her body is still attacking itself) went up a bit over the weekend but negligably so. Now that she is "moving" her days won't be so "backed up" and that should result in her numbers getting even better. As far as the blog goes....there really isn't much to say daily, which is just as well since I have left her all alone in the big dark hospital and come home to see if I still have a house and a business. The laptop came home with me. I will post when I can.

Sunday

So Lannette is doing well. yesterday the Snyder fam came to kick her hiney in some games....which they, and I did....quite easily, in fact. Humility is fun! The fun and games were really the calm before the storm though. After they left it was ENEMA TIME!!! So one sideline aspect of her condition has been the strange urge to covet her own Poo! She has not had a bowel movement of any real quantity in over 2 weeks. Hence the emema action. Her bowels didn't feel the need to actively participate in this game plan, though. So she was up most of the night having enemas. It was not a restful night. The biggest problem with not having the bowel movements is that it is resulting is a high potassium level. Although she did expunge a bit of poo, the decision was made to go ahead with dialysis today to get rid of the potassium build-up. It is not a big deal, just helping her blood out. There is some great news though. Even without plasmapheresis her platelet levels jumped to an amazing 121,000 (150k is normal). This means her body is taking care of itself more and more. She is also producing more peepee. My advice to all is to roll your 401k plans into DEPENDS UNDERGARMENTS for a few weeks......! So that's what's happening.

Im feeling poetic now...

You all have shown so much love and caring
and through this blog with you we are sharing.
We thank you so much for all you do,
now that she's peeing, pray for Poo!

good morning all

So we got good news from my labs last night...platelets jumped! Not enough to get out yet, but enough that my Heme/Onc team is going to talk to my renal team about taking me off of plasma exchange for this weekend to see what my body decides to do with itself. Also, my LdH level, which is an indicator of how my antibodies attacking my cells is down from 1800 to slightly above normal which is 150-200 range.

Other good news...I GET AN ENEMA today!!! Something about not going poo in atleast 10 days has them as worried about not going pee in 10 days as well. ;) Doug is COMPLETELY opposed to it and was sure to tell my team exactly that. He figures I am close enough to diamonds and we could really use the money. Can't have it all!

on to my LONNNNNNNGGGGGGG day...

Howdy!

Hi all!!!

We hope that you are all doing well and I want you to to know how incredibly grateful we are for all of the love and support that we, my family and especially my boys, are receiving.

We want to you also to know that from our point of view...on this blog, sometimes no news is good news. We still have no further information from the doctors as far as cause, cure or time frames. My numbers on labs are moving in the right directions and we will just keep at this in hopes that I will get out of here soon. We are both doing everything possible to make that happen. One of the most important things...a great attitude...

I had a wonderful day today. The best part -- a date with Doug. We finally got through treatments, doctors, nurses, social work, PT, OT, etc, and out he came with my slippers, warm clothes, a comfy blanket, a clean wheelchair and huge smile. Off we went...he helped me choose some fun little trinkets from the gift shop for the boys and then we found the "healing garden" and enjoyed breathing fresh air while standing arm in arm under the stars.

I feel so blessed to have him here. He keeps me laughing everyday. He defines every hard, exhausting experience into something easily overcome. During treatments, while I am shaking and in so much discomfort, he will climb into my bed next to me and hold me til it all passes. He amazes me with his intuitive gentle nature (thank you to his family for sharing him with me, though I am pretty sure you couldn't have him back yet even if you tried - HA!!!).

My favorite Doug line of today..."this is the BEST vacation we've ever won!"

Love and miss you all! Hugs, Lannette(and Doug)

WHAT INAUGURATION???

It's been an odd day today. For Lannette and America. They switched her bed last night and gave her an "air" bed which was supposed to take the pressure off her backside.....it was only slightly worse than root canal or water torture. It looks alot like a playpen with high sides. The only things missing were her stuffed animal George and a little sensory overload mobile hanging above her. A baby blankee woulda been nice...you know...to go with her thumb sucking. After virtually no sleep, we have her regular bed back. Everyone showed up all at once today. Physical and occupational therapies, the kidney team and the blood team all showed up at once. So of course the PT and OT people had to come back later. The hierarchy has been established. At first the decision was to skip both treatments for the day, but then we found out they put plasmapheresis back on the menu. Speaking of menu, she now has to order off of the "renal menu" which basically means I (Doug) will be going out to eat or lose a quick 20 lbs. It makes me want to turn bulemic. We think it might be because of a few meals that didn't make sense to the doctors....clam chowder, taco salad and a cheeseburger....which Lannette ate virtually none of. No wonder they decided to limit it a bit. Vacation's over. She is just now getting into her procedure. It is 4:20 Tuesday. Oddly enough the whole hospital has shifted it's attention off of Lannette and on to some sort of inauguration thingy the apparently is happening today...who knew? We think it's very rude. If one more person asks us if we are watching it....well.....we just might leave. Lannette did do some walking around the 7th floor today. First time up. Although she was very tired; there was no nausia, which is a huge improvement. We have been told we will even be able to take a roll outside a bit later if she still feels up to it. Her renal team just came in and they are going to run some more tests tonight and/or tomorrow. Lannette is looking forward to a good night's sleep and a better day tomorrow....and not just so that people will stop talking about all this inauguration foolishness. Hehheh. RON PAUL 2012.

Monday MLK Day!!!

Sorry about not posting yesterday, but I am back on it today. Lannette is doing better and better. She is now getting dialysis every other day, although the plasmapheresis is daily. Here is the biggest news of all...ready?........LANNETTE MADE PEE PEE, WOOHOO!!! Although just a teenie-weenie amount, it is an improvement. Her dialysis treatments are much more aggressive so it's a bit harder on her....but she takes them head on. Yesterday she only had the plasmapheresis which was especially good because she was able to see the Seth and Soren. Of course this made her incredibly happy. They laughed and played and cuddled and it did so much to improve Lannette's spirits. Her spirits are almost always good, but even better because of the boys. She wants to again express her thanks for the well wishes, cards, balloons etc.

Lannette also feels badly that we can't tell everyone everything all the time, but the fact of the matter is that we just don't know all of the answers. We still do not know 100% if it is TTP or HUS. We still do not know the onset or which day and hour they will kick her out of here. We are trying hard to keep everyone as up to date as possible with everything we know. We do know this; her labs are impoving. The different levels in her blood are getting better. Some fast some slow. She is having random visits from the PeePee Bandit. All are good signs. We know it's frustrating for people to not know everything all the time. It is frustrating for us, too. At this stage it is all about her body learning to help itself. So we try to spend alot of time being happy and smiling which is another way of saying; keeping her stress level down. Optimism is everywhere. So be positive, concentrate on the improvements and stay tuned. Thank you so much.

Saturday 9pm

What a long day for Lannette. The dialysis treatment was very aggressive today. The technicians and doctors were not sure if how much of the aggressive treatment she could handle today, but she made it through all 4 hrs of it. It was very tough on her though. They will take blood at midnight and we will know the results of the lab work tomorrow morning. Which is standard, by the way. Right now she is spending some much needed time with family. She is laying here being very strong, but that's the way she is....as most of you know. Anyone ever notice how she will do absolutely anything for anyone and put everyone ahead off herself? Maybe it's just me. Just kidding. I admire her so much for that. I admire her for so many things, really. Keeping me around for example. It's late and we are tired, so till tomorrow....

NO MORE ICU!!!

So yesterday was a very tiring day...for Lannette too. She made it through another full day of procedures and came out with the best results to date. She even "ordered" me to leave with her family for dinner. Dinner was amazing, words can't even describe it. When we returned Lannette was eating some beef tenderloin and in super good spirits. We had some nice social time with her and then the fam left for the night. Not long after we were kicked out of ICU. They said it was because she was doing so well that she could be moved to the floor for some quiet nite-time rest. Lannette and I think we were moved because our humor and positive spirits were having an overly negative affect on the the staff and her fellow invalids by improving their days when they are used to being depressed robots. At this time we want to let you all know how impressed we are with the staff here. So caring and helpful and understanding. We know it's their jobs, but they really have gone out of their way for Lannette.

So It's now Friday noon and she is about to start another looooong day of dialysis to clean her blood and plasmapheresis. Our new nurses aren't quite sure what to make of us I'm sure. We can't stop making jokes and laughing this morning.

Her blood tests and lab work are all improving nicely. Some of the testing is now leaning a bit away from the TTP aspect and more towards the HUS. As this process continues we will, of course, know more. I cant remember if I have mentioned this before but she has a bit of a celebrity in the medical world personally on her case. He is the world's foremost dialysis doctor.

http://depts.washington.edu/nephron/ahmad.htm

In ICU the dialysis and plasma pheresis happened in her room, now she is taken to a small room on another floor for them. Her kidneys are still not creating urine, but thats not expected quite yet anyway. So that's where we are. I hope to update tonight as well, I was just really tired from all the fun yesterday.

a big personal howdy-doody from Lannette

I am taking a quick moment to say good morning before I head off to my day! A shower, a shower I actually got a REAL shower!!!!!!!! Oh the simple joys in life! Things I really don't want you to be too jealous of...my hairy body. Seriously, they are so selfish - for some reason they won't let you shave when your blood doesn't clot.. Next, my white hospital TED stockings. I am slowly stealing them you can each plan for a souvenier pair to wear to Halloween as naughty nurses with me - and that does include the men!
I am faiding quickly now and am off to Dialysis for 3-4 hours and then 4-5 hours of plasmapheresis so I am going to turn this back over to Doug, my hero.
I mostly wantred to give a big "thank you" to you all for your support, love and prayers. I love and miss you and send hugs and smiles.

To my boys: Hello my darlings.It is so good to hear your happy voices on the phone. Im glad you are enjoying your time with your friends. Momma loves you and misses you very much. I can't wait to see you soon.

Ill love you forever. Ill like you for always. Forever and always my sony-roni and setherby you'll be!

XOXO,
Len

Friday 11 am post

I'd like to start today by letting everyone know what a day in the UW ICU is like for Lannette. She starts her day with various physical and occupational therapies to keep her strength up. and then moves on to dialysis (approx 4 hrs) and plasmapheresis. (approx 3 hrs) She has heart exams, bladder exams, arteriol and veinous exams all throughout the day. She has somebody doing something starting at around 7am and it doesnt let up till 7-8 at night. She is strong today but of course she gets tired. She is certainly not just lying around sleeping all day. Many people are concerned and have asked if she is conscious and coherent. She has never lost consciousness. She does get medication for nausea and pain which basically helps sedate her during the long day of procedures.

As for today.... Her blood work has had its most significant improvement over night. There are many different aspects of her blood that they have been monitoring. It would be hard to go into each one but let me say that some have been high and some have been low, but all seem to be climbing or falling back to safer zones, but the process continues. I hope this makes sense. Word on the street is that she may be moved out of ICU tonight or tomorrow....this is just a rumor but hopefully there is some truth to it. She has started dialysis now and i will update later today to let you all know how the day went and if there are any other updates. Thank you all.

How we got here...

Hello to all of the people that love Lannette...and there are alot of us as I have found out. I suspected but confirmation is nice. For those who don't know me, My name is Doug and I have the privilege of calling myself her boyfriend. So many people have called and texted and sent psychic messages that we decided the best way to keep people up to date is thru a blog...which is totally new to me. So please direct anyone who wants to know what the most current info is to come to this blog and find out whats going. So...whats going on is this....

I took Lannette on her first snowboarding trip to Mission Ridge on Saturday the 10th of January. We had a fantastic time. She did amazingly well. Of course, she took a few falls, as well. Early afternoon we were on our last run and she took a cute little face-plant and hurt her wrist. She was brought down to the first aid shack where she was assessed and then I took her immediately to the ER in Wenatchee. In the ER she started feeling very faint and light headed. Her falls also started to develop extensive bruising. Massive hematomas in fact. She was released to go home after about 5 hours in the ER. On Monday she was taken to the ER in Chelan as she was not getting any better. After many tests and a few units of blood, she was transfered to the Wenatchee ER and then ICU. After many more tests it was determined that she probably had TTP. Here is a link for more info on it.

http://www.nlm.nih.gov/medlineplus/ency/article/000552.htm

Lannette was then transfered to the University of Washington Medical Hospital where her diagnosis was confirmed. Although it is unknown what caused the onset of the TTP the result is that her body is attacking her red blood cells and platelets. The kidneys then became clogged with the damaged cells and platelets causing acute renal failure. At this point maybe it's a good idea to say that Lannette is doing well today. As you all know, she is so very strong. The treatment plan now is two-fold. Dialysis to cleanse her blood and give her kidneys a break in conjunction with a procedure called plasmapheresis which separates the blood plasma from the blood then removed. Donor plasma replaces the old in the blood then it is recirculated back into her blood stream. The point of all this is to remove the antibodies that are doing the damage. It is now Thursday and she has had 3 of each procedures; dialysis and plasmapheresis (the third dialysis treatment is underway now)

I am going to be updating this blog as I get information so please check back when you can. If there are no new updates please do not worry, they will be forthcoming. Lannette and I would both like to thank you all for your support, thoughts and prayers. She wants everyone to know how much she loves you all.

Seth and Soren, mommy loves you both more than anything and can't wait to see you. I will update tomorrow. Thank you all so much.