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