Monday, September 26, 2011

Just Dance.

All right, It's true.... I am the flakiest blogger ever.

But Drew- He is so good. He takes frequent cat naps. He walks like a cowboy- for stability and coolness reasons. He thinks its funny to push me over and then lay on the guilt when I go to return the favor telling me 'it's not nice to push a cripple'. He plays Just Dance for Wii moving only the arm that has the controller; meanwhile I am sweating- putting everything I've got into each move. Every time he beats me... and I end the night frustrated with the makers of Just Dance. How come someone can win while sitting on the couch moving only one appendage?! Just Dance needs to be renamed Just Move Your Arm Around. It's outrageous.

Funniest moment in the last week was during a trip to get gourmet carrot cake mix at Williams- Sonoma. They happen to have a beer making kit on sale. A lady working overheard Drew say that is was cool; she walked over and said 'we have samples I can get you one'. Drew quickly and awkwardly spat out 'Oh, well I am actually not drinking anymore, I mean right now'. It came out oddly but it was too late, we both knew that the sweet lady was (understandably) convinced that Drew was a recovering alcoholic and began to apologize... over and over again. I started to explain but then decided it was funnier this way and let it go. 

The wedding is still on for March 25th, which is six months from yesterday. Get excited. 

Btw, If you know Drew well you know that he loves FIFA soccer. All of his dreams came true the other day when we spotted the FIFA van in downtown Naperville. All my dreams came true when this little girl smoked him. 

Lots and lots of love,

Friday, September 16, 2011

My Old Man

I can't believe it's been a week since I updated this- sorry, but at least I've got good news. After 3 weeks & 1 day Drew was discharged from Winter Park Memorial Hospital! Last Monday he was released and flew home later that night. It was a long, exhausting day for Drew but he made it- hooray! Drew’s right side of his face is slowly catching up with the left side. He will start physical therapy in the next few days. Right now Drew is working on gaining the 15 pounds he lost in the hospital.

On Tuesday I drove from Orlando to Nashville (only stopped one time!) and then on Wednesday from Nashville to Chicago. I am so happy to be able to be with Drew and help out his family. For now I am working from Drew’s home in Chicago.

Yesterday I went into Drew’s doctor’s office. We stopped by to pick up paperwork for at home physical therapy and a handicapped-parking tag. The precious lady at the front desk looked at Julia and I and said ‘It’s just so hard when they get old’. Yeah, late twenties are some challenging years!

Drew, John, Julia and I are so thankful for all of your sweet prayers and support. This journey would’ve been much more tiresome and lonely without all your love and encouragement. We are trying to keep visitors to a minimum- Drew does not have much stamina and tires easily. Feel free to email me if you’d like to stop by or get an update

Friday, September 9, 2011

Smiling's My Favorite

We were told the hospital beds are made for people up to 6’4” but at 6’2” Drew hardly fits on the bed. When doctors walk in they ask, “Does he play basketball?” It reminds me of this:

Drew is doing better everyday! Yesterday the hospital threw us a curve ball. We found out that Drew’s insurance rejected him for inpatient rehab. This leaves Drew with some options:
#1. Going to a nursing home for 2-4 weeks
#2. Having a nurse and physical therapist come to him each day.
We are moving towards option #2.

The second curveball is that they think he will be well enough to be discharged and start rehab in a few days! Praise the Lord for great start to recovery. We are excited and praying for the logistics now. Thanks for walking alongside us in this adventure.

Wednesday, September 7, 2011

Mail Time

My day starts with a trip to Dunkin Donuts to get a number one. The coffee is for me and the donuts are for my favorite person. The lady that works there knows how I like my coffee and asks how Drew is. I tell her he is getting a little better everyday. I look forward to these moments.

We had a very exciting morning. A lady from the hospital walked in with mass amounts of cards and a care package in her hands. She began apologizing before she could even explain what had happened. Apparently there was a mix-up and they couldn’t find Drew in the system; she almost sent all his mail off to Chicago. Luckily everything (we hope!!) was salvaged- even the flowers that were almost given to an extremely lucky stranger.

Here are some photos of all of Drew’s mail and goodies! We need a bigger bulletin board- THANK YOU!

Drew continues to progress- he walked down the hallway using the walker yesterday. Today he has physical therapy, a respiratory treatment, speech therapy, plasma exchange… and perhaps some others I am blanking on. He is in good spirits- exhausting to talk too much but still chimes in here and there.

Peace and blessings,

Tuesday, September 6, 2011

Lucky Number Five

Drew is making the rounds at Winter Park Memorial- we are on our 5th room. His appetite and sense of humor are back. You may have picked up on this from previous posts but it was confirmed yesterday when one of the doctors (so many- I can’t keep count anymore) asked Drew, “When is the last time you had a drink?” and he responded “Not in weeks”.

I will try to paint a picture of exactly what's going on right now. A doctor this morning said he sees maybe 10 cases like this a year in the Orlando area, which is not that many! Drew’s numbing is slowly receding, little by little, daily. The right side of his face is still numb- we've noticed it getting better but as of now he can’t move his right eyebrow and does a very nice half smile. To me he is just as handsome as the day we met- 10 months & 2 days ago, but who’s counting?

Drew has 2 plasmapheresis treatments left; I think we will all be happy when they are over. The doctors are concerned about some of his blood tests and each has different ideas of what it could be. Some think it is just a side effect of the Guillain- Barre Syndrome and the plasma exchange. We will wait to hear and let you know when we do.

The road ahead…. We do not know, but God does. Physical therapy can take anywhere from 3 weeks to 2 years. I am praying for 2 weeks. Once Drew is 'medically stable' he will start inpatient rehab. The plan is he will stay in Orlando for that and then move back to Naperville for outpatient rehab. We are still planning on March 25th for the wedding. Drew is just starting to process what the future will look like and I am trying not to worry about it.

THANKS for all the notes, prayers and encouraging comments. They mean a lot. Drew is starting to read the blog now, so feel free to write a comment to him- I’m sure he’d appreciate it!

Sunday, September 4, 2011

Two Weeks

Drew asked for his phone for the first time today. I knew it wouldn’t be long before bejeweled and angry birds was taken away from me. Today marks two weeks of Drew being super sick in the hospital. He had his 7th plasma treatment- out of 10.  They are painful and long but Drew gets meds to help him through it.

Doctors were in and out a lot- they said Drew’s enzymes that fight copper are low. They are not sure why they dropped… they were high last week. So, they gave Drew four units (bags) of plasma today. Which is interesting to me because tomorrow they will wash it out of him during the plasmapheresis. This is why I am not in the medical field.

Drew is more talkative and hungry now. I am looking forward to spoiling him with smoothies, once he has cravings and redbox movies when he can concentrate.  It’s an interesting thing spending so much time at the hospital…. When I am here I look forward to getting out and then once I’m out I miss Drew too much and can’t wait to get back.

Happy Labor Day Weekend & thanks for praying alongside us for 100% recovery for Drew!

Friday, September 2, 2011

Dream Big Drew!

All of Drew’s dreams came true today. After yesterdays request for a donut, we asked the doctor when he could get the feeding tube out. A speech therapist was sent in to test his swallowing. He passed and was rewarded with a snack pack. Drew’s eyes were wide- it reminded me of a 9 year old being handed a hundred-dollar bill. The snack pack had no chance, it was gone in three bites.

With a lot of help, Drew sat in the big chair today- it made him nauseous again. Then back into bed for the plasma-exchange. For lunch John, Julia and I escaped from the hospital to get the best BBQ in Orlando, 4Rivers. We returned to find Drew free from his feeding tube and snacking on a delicious edible arrangement. Fruit galore! 

All around this day has been great- Drew has shown big improvements. We are now thinking of what the next weeks and months will look like. He has been accepted for inpatient rehabilitation here at Winter Park Memorial- they think he will spend 2 to 4 weeks there but he can’t start until he is medically stable. He is in pain now and they are giving him some meds for it.

The rehab won’t stop there- but that is as far as we are thinking ahead right now. If I’ve learned anything it’s to take it one day at a time. It scares me to think of next month but I know God will give me what I need to make it through today. I’ve got to run, we are moving out of ICU… finally!

Thursday, September 1, 2011

Long Johns & Empires

Lots of ups and downs today… We are still in ICU, apparently waiting for a bed to down grade into. Earlier today Drew, with the help of two Physical Therapists and a walker, sat in a special large chair for an hour or two. It took all of his effort to stay seated upright. It was good because it’s helping him to use muscles that he doesn’t use lying in bed. But it made him really spaced out and nauseous. He has been on antibiotics & battling a fever which appears to be under control. Then Drew slept… and slept some more. 

John, Julia and I are sitting in Drew’s room, they read as I work on building my pinterest empire. Drew wakes up from a nap, looks around and randomly asks if there is a Dunkin Donuts around here. Then proceeds to request a ‘long john’, which is a chocolate long donut, and a Boston crème. So funny! John and Julia said he used to eat them as a child. I am sure a psychologist is reading this (perhaps my father) and thinking that this makes perfect sense- he is reverting back to childhood tendencies. Love it. I will gladly buy him as many ‘long johns’ as he can eat once he is up for food again.

Drew is out for an MRI of his back right now. I don’t like being away from him for long, hopefully he’ll be back soon! 

Pepto Bismol Jingle

Nausea, heartburn, indigestion, upset stomach, diarrhea. HEY! Minus diarrhea, plus 28 other Mono & GBS symptoms. 

Last night was rough for Drew. He had a fever so they gave him a cocktail of medications, which in turn made him nauseous. After they got that all under control he slept reasonably well. This morning Drew had plasmaphersis- it lasted two hours. He has been getting bad back pain from the pheresis- not fun. Physical therapy is here now and they are going to do some stretching in bed and then put him in a chair to see if that helps. The PT said and I quote that ‘He is weak as a kitten’.

This morning I was reminded of how God is using this experience as part of a much bigger story. I know that I will not be the same after this is said and done. I don’t want to be the same… I hope to have much more compassion for others who have gone through something similar to this. I hope to cherish moments with healthy loved ones more.  

Thanks for the balloons and cards- they are a constant reminder to Drew of how much he is loved & that people are praying for him!

Wednesday, August 31, 2011

Santa's White Christmas Coffee

Even in perfect health, flavored coffee never went over well with Drew. So, why I thought I could get away with it now, I am not sure. I strolled in this morning with a smile on my face and a cup of coffee in my hand. It took Drew no more than 15 seconds to wake from a ‘deep sleep’ to tell ‘whoever had the horrible smelling coffee’ to get out stat. Whoops! I was pleased to know that the Drew who hates flavored coffee is here to stay.

Drew is doing better today than the day before :) He is well sedated and therefore is not in much pain. The numbness has not shown signs of retreating yet but the doctors are impressed by his vitals and are moving him out of ICU sometime tonight or tomorrow! This is good news because I am trusting that they think the plasmapheresis is helping. It’s also fabulous because other wards don’t have super strict visiting hours.

They have started to discuss what recovery will look like. We know there will be lots of physical therapy. From what I understand we aren’t ‘out of the woods’ until the GBS shows signs of exiting Drew’s body. But, this is hope that he’s moving in the right direction and although I am hesitant, I am going to go ahead and let myself hope that this is the beginning of good news.

Couldn’t do this without yalls sweet prayers.

Tuesday, August 30, 2011

How was Drew today?

The numbness has continued to rise up Drew’s body- eventually it will decide it’s had enough and go back down. Yesterday it was numb up to his belly button and now it’s up to his collarbone. Drew also had a fever & high heart rate today but the nurses got him back to ‘normal’ quickly. He tried out a new pain med for his back this evening that seemed to work really well; snoring is always a good sign! Never did I imagine I would be excited to hear my future husband snore.

Even though Drew is mostly sleeping or in pain he is still really sharp and knows what’s going on. Today I was in the room and some nurses came in and told him he needed an x-ray. He said that he’d already had one and didn’t need it. They said that he needed another but they’d double check. They came back and said it wasn’t necessary…. Good thing he’s keeping the doctors in check!

Walking through this alongside others that love Drew is such a blessing. Thankful to have John and Julia here. I'm also thankful for you and others that continue to follow along in this journey- offering encouragement and prayers. Thank you :)

Breaking the rules

This morning during Drew’s second plasma treatment the back pain returned full-force. Physical Therapy is coming in today to try some different things. Please pray that they would figure out how to ease the pain. Drew has nine + days left of plasmapheresis- which means he has to stay in bed, not moving. I am praying that the pain wouldn’t continue for the entire plasma-exchange process.

Yesterday Drew & John got into some trouble with the nurse for helping Drew move in his bed to where he was on all fours to relieve the back pain. Today he said, ‘Dad will you help me break the rules again?’- broke our hearts but the answer was no. We aren’t sure when the GBS will start to back off. It’s hard to tell how far it’s already gone. Drew is still breathing mostly on his own, with some treatments here and there.

Because of Drew’s pain, nausea and numbness, he isn’t usually up for talking. But last night God gave us some time together I won’t soon forget. His pain subsided long enough for him to hold my hand and tell me he loves me. I am so thankful for that sweet moment. We are so encouraged by the amount of people praying & following along on this journey via blog. Thank you!

A few people have asked for the hospital address to send cards and what not. That is great :) Click here for contact info.

Monday, August 29, 2011

Out with the old & in with the new... plasma

It was another day of ups and downs. The doctor told us this morning that another 10+ days of hospitalization is to be expected, not necessarily all in ICU. Drew had a dialysis catheter put in (his shoulder) this morning. I was previously unaware that there are more than one type of catheter. The ten days & catheter are both a part of the plasmapheresis treatment he'll be receiving daily, starting today- see machine below!

Julia and I may be every nurse & doctors worst nightmare. By the time they enter to tell us Drew’s newest diagnosis or medication we have done our research- reading up on the 82 possible symptoms and then browsing countless stories about others who have 'been there, done that'… we finish by comparing notes. Drew's team of nurses and doctors have been patient with us and attentive to his needs- thanks for praying for them!

Today Drew had a feeding tube put in around 2:00p. At 4:00 he got his first treatment of plasmapheresis. It was a little scary to watch Drew’s blood get pumped out and then put back in. His plasma just hanging out…. Outside of his body and then thrown away… So crazy. I have a new appreciation for medical technology. 

Drew has had back pain on and off this last week- he had a CT scan for it yesterday morning and the results came back good. The pain showed up again full force during the plasmapheresis. The worst feeling ever is watching him in pain and not being able to do anything. They give him pain medication but can only do so much because they don’t want to impair his already fragile breathing. The doctors say that the back pain is not related to GBS but may be from being bed ridden for over a week- plus he already had some minor back pains before getting sick. Please pray for Drew's perseverance and that this pain would go away. 

Where to begin?

At the beginning. Drew got mononucleosis on August 9th. He was super fatigued & had typical mono symptoms. On August 21st he flew down to Orlando to spend sometime with me before heading back overseas. The next day- Sunday, he started to decline- feeling nauseous and was really dehydrated. He went to the ER on Sunday night. They pretty much said that he had mono bad- gave him fluids, pain medication and sent him home. The next day he got worse with the same symptoms plus throwing up. We returned to the ER on Monday night. They said the same thing- gave him more fluids, took more blood, gave him nausea medication and sent him home. Tuesday was a long day where I prayed and prayed he was getting better. I am an eternal optimist so I was sure he was recovering. 

Wednesday he was worse again, and his mom- Julia flew in around 6pm. He asked to go back to the ER (for the third time!). We agreed and took him right in. This time was the worst- he couldn't walk and was admitted immediately. He had mono + dehydration + jaundice + nausea + pain + tingling all over his body. After that it is somewhat of a blur. Drew's dad, John flew in Friday night. Drew has been diagnosed with Guillain-Barre Syndrome. Feel free to read up and ask questions if you like. 

With GBS it attacks the body's nervous system, creating temporary paralysis starting at the toes and working it's way up and eventually recedes. Every case is different and some are much more severe than others. Drew has many ups and downs- he goes through intense pain and nausea often. I have lost count of the blood tests, ultrasounds, CT scans, MRI's, and x-rays. 

Where Drew is now: In ICU @ Winter Park Memorial where he is on pain meds, nausea meds, blood clotting meds, potassium, fluids, IVIG (Intravenous immunoglobulin), and receiving Plasmapheresis today. The numbness (paralysis) has reached his face- he is having trouble swallowing and breathing. They are ready to give him a breathing tube if needed. 

I am not a doctor so please forgive any medical terminology I screwed up. God has given John, Julia and I lots of strength and we appreciate your prayers so much. We know that God is sovereign in this and we trust Him with Drew and what lies ahead. We will do our best to update this blog when we have information. 

Lots of Love,
Whitney, John & Julia