VOTE FOR SAMANTHA!

My mom entered Samantha into a "beautiful baby" contest and we need your votes! You can vote once a day per email address.. pass it on to anyone you know. Here's the link. If she wins this, she moves onto a national contest and can win $5000! If for some reason the link doesn't go to her picture, the email address it's under is kestes9@gmail.com - you can search that way.

http://wphl.tribunepromotions.com/babies/tip_bb_wphl,0,4123676.ugcphotogallery?index=80223

thanks for your vote!
kristi

Continues to make progress...

What a week! If I could just stay in bed....

sorry for the blogging delay.. i'm sure everyone has been waiting for a posting and i have been trying to get back into my daily routine back home.

My dad has been doing better and better each day. They started him on a steroid on sunday night and by monday morning, he seemed a little more with it and slightly better. Today, however, he was so much better! I was able to talk with him on the phone. He figured out how to answer the phone, first off, which is huge. Then he had a conversation with me with full sentences. He still was grasping for some words, but what a difference! I said, "dad, I have to quiz you again like i do every day.... do you know your grand-daughter's name?" Before this, he could never remember her name. Today he said "I remember Kristi, it's Samantha!" Well, i started crying, he started crying and it was such a happy moment! I think he is finally realizing what is going on and it's hitting him hard emotionally.

David left to go home on Monday evening, so my mom is by herself. It is hard for us, but she knows we have work and have our families at home. She seems to be doing better with each day too.

They moved my dad from ICU to a regular room and he will be discharged tonight to Marlton Rehab for acute rehab services to include OT, PT, and Speech. He'll get all the therapies each day and will stay until he's safe to go home. We hope that he makes quick progress and that each day has drastic improvements. So anyone who wants to visit, it's close to home!

Here's a link to the place he's going. Look at that, i figured out how to highlight a link!
http://www.marltonrehab.com/Inpatient/index.html

I personally feel that the more he talks to familiar people and reminisce stories and all, the more that will come back to him.

I think well wishes and prayers have helped, so keep them coming.

As for other news, Samantha will be 6 months old on Thursday.. it's crazy how fast time has flown. She's so much fun now and is constantly laughing, talking, and moving. She kicks her legs all the time, is sitting by herself (with padding around her) is rolling all over the place and is starting to bring her knees in... not sure how long before she crawls!

We started her on rice cereal 2 weeks ago. She LOVES it! she was all into our food and I knew it was time. I go to the doctor this Friday so i'll be sure to update her stats.

She loves her cereal!


Sam's First pretzelmore to come soon!

Kristi

AN ANSWER!!!

We are so excited that the doctors have figured out what has happened.... and there is a cure! my dad had a sinus infection about a month ago and was on a sulfa drug.. as you see on the website below, that could have been the cause of it as well as the overall sinus infection.

the diagnosis is acute disseminated encephalomyelitis. the website describes it all!

www.adem.org

Dad is so much better today! he's laughing and talking so much more. Some thoughts are hard still, but it's like night and day.

They will start him on steroids today and could be a few days or weeks, but the doctors seem to think he'll be back to normal in no time. We're so thankful and are just keeping our fingers crossed!

Kristi

Each day gets a little better...

I asked him to smile, here's what I got! At least he's off most of the attachments he was on just Thursday.


My dad's spinal tap came back totally normal. So now the doctors are going to continue to run tests and they assure us they'll get to the bottom of this. The next test ordered is an MRI of his lumbar and cervical region to look for inflammation there. Yesterday the ICU had 5 new admissions, so the floor was absolutely insane and they weren't able to run tests. I think the docs are all meeting to look at the treatment plan to see what they feel will be the best sequence of events.

Dad was happier and much more alert yesterday. The PT got him up and out of bed. He still has a 24 hr aide as apparently he's been trying to climb out of bed from the sides and over the top. We feel that he is less confused and seems to understand more. He's also talking more, still the words are hard to grasp.

We have a list of questions for the doctor today and will hopefully know more by the end of the day. I told my mom and Dave to bring stuff and start to quiz him, have him read, have him carry on a conversation with turntaking, and so forth to get his brain working. That's the OT in me. Ashame i don't know much else about this area.

I'm heading back home today and Dave will be here. I know he's in good care and my mom will still have company.

More to come later....
Kristi

Some good news and hopefully some answers to come...

Hey everyone..

Well to add to the chaos of our lives, Berlin got hit with some serious storms yesterday and we have NO power at my mom and dad's house.... so we lived by candlelight last night, had to empty the freezers into coolers, and are trying to survive the heat without AC. So i'm finally getting to blog this morning at the hospital.. fortunately they have wireless network.

My dad looks so much better this morning. They took off his EEG and took out his oxygen so his head isn't taped anymore and his nose isn't itchy! less things for him to pull at.

Late yesterday afternoon, the doctor met with us again and gave us some good news...

they did 3 very specialized tests to look at his heart and all his arteries and veins from his middle up. These are tests they never did at Jefferson... they found completely clear everything that indicates NO STROKE! No cardiac issues at all. This is huge news. So...

The doctor really feels this is a demyelination process (i guess can be described as the sheath around his axons in his brain are affected some way). How i wish i did better in my neuro classes! This is ususally caused by an infection of some sort. The more in depth tests from his lumbar puncture are supposed to come back today as it took a few days to get from the lab. The doctor thinks they'll get here today at which point he can be treated with steroids, antibiotics, or other medication and have a good prognosis! this will help shrink and eliminate the masses in his brain that are pressing on this centers of his brain affecting his speech and memory.

Let's hope we get some answers soon, but he's looking so much better and we're trying to explain to him that this is a temporary thing as i don't think he understands and is frustrated that he doesn't want to live like this. He has an aide by his bed 24 hrs a day to make sure he is okay and doesn't pull on his tubes. Also, they said he's been very restless and has even tried to get out of bed which is not good as he's connected to too many tubes and is at a fall risk.

He did Skype with Samantha and Nick yesterday which brought a smile to his face. I hope we're on the upswing!

I'm heading back to GA on Saturday and Dave's staying until he's not needed anymore. His boss has been very understanding fortunately.

Thanks for all the notes and phone calls. It's nice to know so many people care about him.

Kristi

He's a fighter!

We left the hospital feeling much better today than in previous days. My dad's now at Capital Health System Center Institute for Neurosciences in Trenton, NJ. The staff and nurses have been wonderful and they only do stroke so they are all specialized. It's a smaller hospital so he is getting individualized care and being in the ICU, the nurses are quick to his bedside if needed.

They removed the breathing tube and feeding tube this morning and dad is doing fine breathing on his own. He was a little out of it for most of the day with all the changes and trauma. He smiled at us but he didn't talk too much. He had a male nurse, Diego, who couldn't believe how strong he was, fighting them when they tried to take the tube out in the morning.. took a few people to hold him down.

This evening before we left, my dad quickly came to it... Diego told us that they were going to put an NG tube (through nose) to feed him because they don't know if he can swallow or anything. Dave and I asked if they were going to sedate him to do this as we knew he would not do well. Diego felt he was so out of it that he probably woudn't notice. Dave and I said ok, give it a try, snickering.

They started the procedure and my dad began to fight them.... he came out of his slumber and said "NO WAY! You're not putting that in me!!" Ha! Diego told him he had to drink some medicine if he didn't want a tube, and he proceeded to drink several sips through a straw. YES!! Then my mom told him they were going to take him down to get a pic line put in so they can administer meds and get blood and not have to stick him. He responded "I don't want it." She tried to con him and explain that it will make it easier on him. He said "I understand you and i don't want it!" Needless to say, he didn't have much of a choice.

He also looks like a mummy as they have an EEG monitoring his brain, so his head is wrapped in gauze.

The neurologist sat and met with our family and talked about all they think is going on. They are not convinced that this is a stroke and are going to do several more non-invasive tests to see what's going on, but not duplicate anything. Most tests will be done in the next 24 hrs, so we should know something. the doctor said he won't leave until we have an answer.

So things are looking up a little, let's hope tomorrow brings some answers and good news. One good thing is that Dave and I found the patient lounge and they have free Tastycakes! I stocked my purse. Yum.

More tomorrow... thanks for all the calls and emails. We appreciate it so much.

kristi

a bad turn....

Here are 2 pics from my parent's last visit, taken on 6/11/10

Well i came home from NJ and stopped my updates because not much had changed... until today.

My dad was discharged from Jefferson today - the spinal tap came back fine and they ruled it kind of an "explosion of emboli?" or something like that, saying that small bits of plaque came off his artery and went into his brain affecting different centers. They started him on Coumadin blood thinner and my mom was going to be with him at home and go to outpatient OT and ST.

They drove home fine but when my dad got into the driveway, he became agitated and upset and would not get out of the car. The neighbors came to help my mom to no avail. It got really bad, so my mom took him to Virtua ER where they had to sedate him. He's now intubated and sedated. They took him and my mom via ambulance to Trenton to some specialty stroke hospital - i'm not sure of the name. They just inserted a feeding tube in his nose. He's in the ICU.

My mom says they have been wonderful there so far. Jefferson was an absolute nightmarish experience which is sad with their reputation and my mom having worked there so long. Glad he's out of there.

This has been a very hard time for all of us. Dave took a train to trenton and will arrive at 4am and I'm flying back in tomorrow at noon. I have to leave Samantha here which is so hard, but i can't rock her world anymore. I know Nick will be happy to have father/daughter time. Needless to say, he had to cancel his guys weekend to Vegas.

I'll try to update as i know more. They're monitoring him closely and hopefully this will all be a distant memory soon and my dad will come out of all of this.

Keep us in your thoughts and prayers.

Kristi

Saturday night... not much new

Well another day has come and gone. Not really anything new to report. My dad is still the same. He seems to do better in the morning with thought processes and then struggles later in the day. It hit me today when i showed him a picture of Samantha and he responded "Oh my god, look!" I said, "dad, do you know who that is?" He said "yes, your daughter!" I said "Do you remember her name?" he said with a complete look of defeat "No." I told him Samantha and he lit up and said "Oh yeah!!" He totally knows that he's struggling. We try not to press him and just talk as normal.

Dave and Gwen headed home this afternoon and I'm heading to Atl tomorrow to spend father's day with Nick. I'm going to stop by the hospital in the morning to see him too before I leave. He doesn't know it's Father's day.. we keep telling him but he does not remember.

again, thanks for all the calls and emails. we appreciate it so much! Monday is the next test and we'll go from there!

Kristi

Friday evening update

My dad seems to be doing better today, still not back to himself but has been talking more and seems to be able to answer more appropriately. The results came back from his EKG and they thought for sure my dad was having small strokes. So.... today they did a trans-esophogeal echo... he swallowed a small camera to look at the back part of the heart. They thought for sure they'd find the problem and move on from there. Well, no such luck. His tests came back normal so there are no strokes. So we're back to square one.

The cardiologist came in and said that indeed, they are going to do a spinal tap. Unfortunately, my dad took his last dose of Plavix which is a blood thinner, on Tuesday night. You have to wait 5 days after taking blood thinner to do this test. That brings us to Sunday night/Monday morning. He is at risk for throwing clots or something being off his blood thinner, but if he does not do this, they won't be able to proceed with the tests that will hopefully show what is going on. It's a risk that needs to be taken, so hopefully if he feels weird or at all different, he'll know to tell the nurse. Let's hope that nothing happens. Apparently, people who have stents placed need to be on blood thinner for 1 yr, and June 1st was one year. Keep your fingers crossed.

Dad seems to know us more today and called us by name. He was scanning the paper which he did not do yesterday. He also is laughing a little and talking on the phone - he still struggles to find words but seems to better get the gist of things.

My dad will be in the hospital at least through the beginning of the week. He is NOT happy and wants to go home. He hates being in the hospital and you know how stubborn he is when he does not get his way.

My mom is okay... spirits are a little higher with some improvements today. Let's hope it continues, however, we need to find out the answers as to WHY this happened and what the things are on his brain.

Hopefully tomorrow will bring better news... we won't have any new test results until next week but lets hope that things keep looking up.

Thanks for everyones calls and emails... glad so many people are sending us positive vibes.

Kristi

Thursday night update

Well another hard day... Dad has shown no improvement and his condition is still unknown. He has really shut down and is very quiet. We know he knows there is something wrong and we think he is struggling so much to talk and conversate that he just says nothing. It is breaking our hearts. Very painful to watch.

Dave and Gwen got here today and he said "hey guys!" We're not sure if he remembers our names but he knows who we are. That's about all he said.

They did not yet do a spinal tap as they did a echocardiogram to see if his heart is producing clots. This would mean maybe he may be having small strokes... as of 730pm we have not heard results of this, but is seems very unlikely since he is on blood thinner. If this is negative, then they'll do a spinal tap tomorrow. If he is having small strokes, we don't know what that will mean for his prognosis.

We're all home at my mom's now and probably we'll all get to bed early. I'll report more as we find anything out.

Keep the thoughts and prayers coming.

Kristi

oh i forgot...

they're probably going to do a spinal tap today to see if these things are a result of an infection... he had a sinus infection 2 weeks ago and they don't know if this went to his brain. Maybe that would be an easy answer? and maybe an easy fix?

An update on my dad

Well, i'm at home in NJ now with my family which is better than being in GA. To recap, my dad was totally not acting himself at his visit to GA last week. He was very quiet and slept a lot. He told us he was just tired and nothing was wrong. It was so strange, but on Thurs he starting acting very different and seemed confused and not able to do things that were normal tasks. He was adament nothing was wrong and that we needed to stop asking him.

They left on Friday morning and my mom made him an appt for the doc on Monday. The weekend got worse... he slept a lot and just, again, seemed so different. By monday, he couldn't write his name at the doctors office, was roaming around, and was unable to come up with words that he wanted to say. No sign of a stroke though. They sent him for an MRI Tuesday and it showed no acute problem but they saw some abnormal things on it.

Wednesday am was his neurologist appt. They see some growths on his brain and admitted him to Jefferson University Hospital, one of the best neuro facilities in the area. The specialist neuro is reading the MRI this morning but the other neuro says she has never seen anything like this. They are not sure what is going on.

They do know that these growths are pressing on the language center of his brain (at least one is) which is affecting his speech. He knows what he wants to say, he just can't come up with the words. It's so sad to watch and i know he's embarrassed and frustrated. He doesn't remember things from one minute to the next or what happened yesterday. He still knows all of us, but it's more facts like "what kind of sandwich did you eat?"

Meanwhile, Sam and i took a fast flight home yesterday to be with my mom. I am so thankful she's such a good baby and is okay with pick up and go.... 6 flights before she's 6 months old, not bad! Dave and Gwen are coming in today. They cut a FL vacation short to be here.

It has been so emotional... my mom has watched my dad fall apart from day to day. He just doens't understand what is going on but has finally accepted that there's something wrong.

I know it will all be okay - Nick sent me a picture of a double rainbow last night from a storm in GA and I know that's a good sign. I'm supposed to be here until Sunday but will play it by ear as we get more news.

I'll keep everyone posted but please keep us and my dad, especially, in your thoughts and prayers. My mom is very low on her cell phone minutes so if you call and leave a message she'll call you back. Feel free to call me if you want to check in.

love you all!
kristi

Sammer Jammers

This blog posting is actually a week old.. i saved it and realized i never went back to "post" it. So hopefully i'll have another one coming shortly.

Samantha is very active! She's such a nosey little girl (takes after her mom i guess!) and wants to know all that is going on around. She grabs for everything and puts everything into her mouth. If she's eating and someone walks in, she stops and looks around to see who's there. It's funny. She does not like to be alone either, and will let you know that she wants attention. As soon as you acknowledge her, she's all smiles. We're fortunate she's a happy baby and keeps us smiling.

Our neighbor Lynn started calling Samantha "Sammers" when she was first born. Nick and I find ourselves calling her that all the time and we make other forms of it such as "Sammer Slammers" and "Sammer Jammers", Nick sometimes says it with a lisp. It's funny how catchy it is.... I came home the other day and the babysitter is calling her "Sammers" too. I'm sure it'll stick as a nickname for awhile. Makes us laugh.

What a week. It's been a typical busy week in the Estes household. Keeping up with our work and social lives is a hard balance. We have been busy entertaining and hanging with friends which is a much easier and fullfilling task as Samantha goes to bed early and sleeps throught the night. We had a Memorial Day BBQ with our friends Lauren and Kyle (and Jane Ellen, 11 weeks), Lynn and Mark (with Claire -2 and Laura 16 weeks) and Tripp and Michelle (with Avery - 3). It is always a nice time to get the girls together and have them play and interact (or stare at each other). I know they'll grow up to be best friends so we'll start socializing them early.

I took Samantha to a 5 month appt at the doctor and she's a whopping 16 lbs! Yes, she's a big girl but the doctor is thrilled with her growth and doesn't want us to start on food until she's 6 months as my milk is more than good for her. She's gotten so long too! Look at her in her crib. We always find her smashed against the side. She doesn't seem to mind it.

More to come soon.....

kristi