Artistic Endeavors

It's Alison again; I'm heading back to Utah tomorrow, so this will be my second and final on-the-scene blog entry.  The previous one was more like a novel, so I'll try to make this shorter.

We had a nice Saturday with lots of visits from friends.  One of the visitors was Glen, a friend from the ICU days.  Although he spends as much time as he can with Regina at her rehab facility, Glen took the time to come see Neil this morning, which was awesome.  I was glad to finally meet him.  We enjoyed spending time with all our visitors--thank you all for coming by!  One note: Neil is generally more alert in the morning and early afternoon (although on weekdays he has therapy  during some of those times).  Because he has such busy days, he is a little bit tired (and sometimes grumpy) in the evenings.  So depending on when you come by, you may see different versions of Neil.  However, we are always happy to see friends!

One fun activity we tried today was drawing.  We set Neil up with some paper and a few different colored pens and pencils and let him go to town.  He spent quite a bit of time scribbling, and at one point when we asked him to draw a circle, he drew something pretty circle-y.  What makes it all the more impressive is that since his right arm is the one working the best right now, he had to draw with that rather than the left, which is his usual writing hand.  He seemed to be working really hard at it and had a long attention span.  No wonder he was tired by the time evening rolled around...  

Eat, Walk, Talk, Smile

Howdy--Alison here. (I'm Neil's sister, for those of you who don't know me.) I'm visiting from Utah for a few days to spend some quality time with the Superbrain.

The title of this post is a bit of a tease; Neil's not quite eating, walking, talking OR smiling yet. But he did make some progress today toward each of those goals.

Eating: Neil's speech therapist came this morning to give him his first real shot at eating. She brought a full breakfast tray like the other patients get. Neil wasn't a huge fan of the oatmeal, but he loved the pancakes! After the therapist fed him a a few bites, she held out the fork to see if he would take it. Sure enough, he grabbed the fork and got the food in his mouth on the first try! He'll still need plenty of help eating, and he's not quite ready to switch entirely to real food yet, but it was a great start.

Walking: With the help of two therapists, Neil was able to walk around the room during physical therapy. He moved his right leg on his own, and although the therapists had to support him and move his left leg for him, they were impressed by how strong that leg is.

Talking: This one is still a ways away, but Neil made definite sounds several times today. No words yet, and we're guessing he doesn't have much control over when/how he vocalizes, but we're hoping that this is the start of some attempts at verbal communication.

Smiling: This might be the most exciting one for those of us familiar with Neil's personality. This morning, Neil was sitting in his chair and Mom was reading to him. He still had a little stuffed dog sitting on his lap from a game we were playing earlier. At one point, when Mom was engrossed in the reading, Neil picked up the dog and threw it at her--hard. She was startled, and I started cracking up. Suddenly, Neil got this huge smile on his face (well, huge for him, compared to the total lack of emotion he shows most of the time). It was fleeting, but Mom and I both saw it. We are sure that was a little glimmer of that sense of humor we love so much.

--Alison

Gulp!

Neil passed his swallow test today. This means he gets to eat! Tomorrow morning he will get his first breakfast and we need to be there to learn how to feed him so he doesn't choke. I'm sure this new ability will go very well for Neil. He's been an awfully long time without Chipotle!

The test itself was fun to watch. Neil was given foods of various consistencies mixed with Barium so we could see on the x-ray screen how well he was able to get them down. The only thing he had a little trouble with was water, believe it or not. He could handle it fine by the spoonful, but drinking from a cup was a little too much for him. He'll learn that soon enough, I'm sure.

And this was exciting for us: when we were playing catch with him, Scott would ask him to throw the monkey to Mom or Dad and he got it right nearly every time. That means he recognized who Mom and Dad are. This is our first indication that he might know us!

A Yard and a Half and a Cloud of Dust

Scott gave me the title for this post. It's a modification of a term used to describe OSU coach Woody Hayes' style of football and pretty much explains the reason why I'm not a football fan. It's an apt description of the game Neil is playing now. He moves ahead, but it's a slow move. It isn't always exciting (except maybe to parents who are looking for any little thing), and sometimes it's all he can do to maintain the line of scrimmage.

That being said, Neil enjoyed petting and playing with Sherman, the therapy dog, today--even throwing him a ball a few times. He was able to focus for a few minutes on a balloon game in the afternoon, which was pretty awesome because his attention span in the P.M. can be pretty short. And here's a couple of extra yards: Neil walked a little bit. Now, let me explain. He had a therapist on each side holding him up and they had to move his left leg for him, but he actually took a couple of steps with his right leg.

Yup, we're going for the touch-down.

Home From the Night Shift

Sorry such a late post tonight. Internet access is a little hard to come by at Kessler and we just got home. So, a quick update tonight. Neil can throw. Well, maybe it's kind of a toss, but he would pick up one of his little stuffed animals and toss it to us. When we threw it back into his lap, he would throw it again. If the fact that he did it over and over again indicates that he liked it, then I'd say he was enjoying himself. Honestly, it's hard to tell. He will actually smile very briefly with the right side of his face on command. But it's just like anything else he does (thumbs-up, handshake, hug, high five, etc.)--he just does what you ask him to do. It doesn't happen spontaneously. If I'm sounding a little negative tonight, it's probably just that I'm tired. His doctors and therapists are all very pleased with how he's doing. With all their experience, I think it's a good idea to trust their judgement!

P.S. No hip issues. Maybe his wriggling is just normal for someone with a TBI.

Lab Rat

This is not Neil--just a random google image

Neil had some unexpected guests today. About ten or so military scientists visited us in his room to see a test that he was involved in. Neil is part of a study being done by the IBRF that uses computerized brain wave information from an EEG to determine how best to treat him. He'll be tested every two weeks to assess how things are going, and if they want to make any changes in his treatment. The military is interested in this study because there have been so many brain injuries due to IEDs since the current military conflicts began. So, while Neil was hooked up to many sensors attached to his head, these people very kindly and politely asked me questions about him. It kind of felt like he was a celebrity. I think he would have enjoyed the attention if he had been aware of what was going on. I know he wasn't enjoying the test itself because it required a lot of sitting still and he was getting very antsy!

And speaking of ants in the pants, Neil had his hip x-rayed today to help determine why he seems to be so uncomfortable on that side. Hope there's nothing wrong there, but I sure would like to know what's up with his wiggles.

Whatever Happened to "Easy Like Sunday Morning"?

Busy, busy, busy. Fortunately for Neil, busy is what we want. First, because we need to keep him awake during the day; and second, because we want to stimulate that superbrain of his and get him all better.

So, even though it's Sunday, Neil had an appointment with the neuro-optometrist. Dr. Vicci gave Neil a thorough exam and prescribed a cool eye patch. Since Neil is currently wearing his glasses instead of his contacts, this little baby fits over his glasses lens. We will be patching each eye at different times for different reasons. As a result of today's patching, Neil was able to watch TV for the first time. How insane is that, that a couple of parents would be so excited to have their teenager watch a silly TV show!

Lots of company today. Thank you, to all who made the trek out for a visit. After a sluggish beginning, I think Neil was finally awake enough that he recognized his visitors. He sure seemed to. Of course we can't really tell without his facial expressions. (Although we did see a few twitches...) He gave out handshakes and hugs to all upon request. Some of his friends got him to twirl his cell phone like he always used to. When they put a Playstation control in his hand, he immediately pushed the "on" button. Maybe that was a dirty trick--got his hopes up that he'd get to play a game!

It's Picture Day

This is Neil's view from his bed.

Pretty cool, huh? All the nurses and aides admire the cranes. It's so fun to tell them there are over a thousand and they were made by his friends, family, and people who care about him.

These are the shoes I keep talking about.

They were about a week old before the accident. Neil went all the way to a skater shop in Scotch Plains to get them. Much better than the torn up vans he wore forever. They will serve him well as he learns to stand and walk again. We removed the right foot rest from his chair because he likes to move himself around with that foot on the floor.

Another good day. Still working on staying awake during the day, sleeping at night, but it's getting better. It's so fun to see what Neil understands and what he will do when asked. Scott asked him to thumb wrestle with him and Neil put his hand up and did it! He has given us each a hug with his good arm when asked, and even patted my back on his own. When Scott prompted him to wave good-bye to me today, he did.

He's also doing a few things without being asked--just from picking up cues from what's going on. For instance, when the aide was putting his t-shirt on today, he reached his good arm up through the hole himself. (Unfortunately, it was the head hole, but a good attempt anyway!) Whenever Neil is being moved from the bed to his chair, or out of the room to his therapies, we put his super-duper helmet on to protect his head where the bone is gone. When I bring the helmet over, he reaches up with his hand to help guide it on.

I am constantly amazed at what is going on in his brain. I love the little signs that our Neil is beginning to emerge from behind his emotionless face. And I'm getting a little anxious for his infectious grin!

Double Posts Today!

Scott's been on duty all day today giving me my first day away from Neil since the accident. I missed him terribly, but it felt a little like a normal life again. Well, a normal life without my eldest son... Maybe not so normal after all.

Neil seems to be having trouble focusing. He's probably seeing double which must be pretty annoying. That might explain why he doesn't look at anything for very long. He has an appointment soon to see a neuro optometrist. His doctor thinks it will be fairly routine to correct the problem--like maybe wearing a patch for a while.

One of the focuses of Neil's rehab is getting back on a regular day/night schedule. They are attempting to keep him in his chair and awake all day. Well, we can keep him in his chair, but sure can't keep him awake! Because he keeps taking these little, stubborn naps, he tends to wake up in the middle of the night. They assure us it is normal and will take a few days to a week to get him back on track. Drugs will surely be involved in this pursuit. Guess that's why were in a hospital-like facility.

And it looks like clever Neil has discovered a new trick he can do. Since he's been in the wheelchair all day, he's figured out how to move himself about by pushing with his right leg on the floor. Granted, he doesn't really go any particular direction, but I'm pretty impressed with his ingenuity!

Reality

I've been accused of being overly enthusiastic, or maybe just too positive in my postings about Neil's progress by those who have seen him. Perhaps I have been, because we celebrate the smallest of achievements. Just so you know, Neil is still in what is called a minimally conscious state. He shows no facial expression or emotion. He may, or may not look at you. His movements are still quite spastic and he doesn't respond to promptings consistently. His doctor expects he will be more awake by the end of a week but, as I've been saying all along, this is going to take a long time. Still hoping for continued progress, but we see every step forward as a gift from God.

Good Day Sunshine

There’s so much to tell you. Let me just start by expressing our appreciation to the caring team at Robert Wood Johnson SICU West. They are amazing, and we felt like they were family by the end of our stay there. Needless to say, I shed a few tears as we left. Thank you, thank you for taking such good care of Neil and us!

Now, it’s on to new things. It’s our first day in rehab and Neil is dressed in a t-shirt and pajama pants. He’s also wearing his awesome shoes. (So glad we found them!) No breathing help of any kind now. He’s been sitting in a special wheelchair most of the day. Neil showed his stuff and amazed us all today in his various therapies. He gave a thumbs-up on command and had some success picking out various colored cones when requested and stacking them. When given a toothbrush, he automatically brought it to his teeth, and he showed what to do with a comb. All of these with his right side, mind you. But there is hope for his left. He pulls his left arm back when it’s pinched (not by me!) and that’s a good sign.

The speech language-pathologist actually worked with him on swallowing. She was so surprised to see he could chew on ice and swallow it, that she ran to get some applesauce. Sure enough, he was able to swallow a little of that. He’s not ready to switch to mouth feeding yet, but he’s certainly got a head start on the right road.

Okay, enough for now. You can see why we’re so exhausted! Come see us and cheer Neil on. We’re inconveniently located at:

Kessler Institute for Rehabilitation
1199 Pleasant Valley Way
West Orange, NJ 07052

Visiting hours are from 8:00 AM to 8:30 PM every day, but Neil has different therapies throughout the day, so it might be best to call first—or just plan on visiting in the late afternoon or evening. He’ll be done by then. We realize it is a long distance to come, so please don’t feel obligated.

I did get some pictures of the cranes. :-) I’ll try to post one tomorrow.

If you’re feeling so inclined, say a little prayer of thanks for the long way Neil has come so far. We’re feeling so blessed and happy. We’re hoping for lots more where that came from!

Long Day--Short Post

Too tired to write tonight. Neil's in rehab at Kessler Institute in West Orange. I'll fill you in tomorrow.

Goodnight.

Time to Fly

I don't know why I bother telling you what the doctors say. They change their minds and they disagree with each other. (Don't get me wrong--I still have great respect for our doctors!) What I'm trying to say is Neil doesn't have pneumonia. Apparently he had some kind of blockage in his lung that is now cleared up. He had a great day sitting up in the chair again for several hours. Eyes wide open, but not a lot of focusing. Lots of movement in his right limbs. He likes to pick things up with his right hand. It was fun to see him trying to take the pulse ox monitor off of his left finger. Of course we had to stop him, but if that isn't purposeful movement, I don't know what is!

Now Dr. Danish says we'll wait on the skull reattachment for a couple of months. Since it is major surgery, we don't want to set Neil back any. Time to get rehabbing! The move is supposed to take place tomorrow. The location is still up in the air. Be patient with us...it's a big decision!

And now we'll be taking something in the neighborhood of 1, 050 paper cranes with us. Yes, they have flown into the ICU and they're beautiful. And we understand more are coming. I think our rehab facility decision will depend on which one will let us hang them all in Neil's room!

Heavy Breathing

Neil has a bit of pneumonia. We are hoping it will clear itself up with the new breathing help he is getting from the nose oxygen, and from the chest PT the nurses give him every two hours. That involves pulling him onto his side and playing the bongos on his back. If this doesn’t work, it’s the breathing tube in his mouth again.

Dr. Danish, Neil’s skull remover, said that Neil’s brain has settled down and he may be putting his bone flap back on very soon—possibly even before he leaves for rehab. When exactly that will be now, we don’t know. Looks like no one’s going anywhere (including to surgery) until his lungs are cleared up.

On the bright side, Neil had a pretty good day as far as making eye contact and interacting with us is concerned. It seems like he is trying to make some controlled movements with his right hand and arm now. The nurse even saw one of his balloon kicks! I don’t think any of the hospital staff has believed that he is doing it purposefully. Now we’ve got a witness. :-)

--Lori

Addendum

Let me just explain about Neil's chair adventure yesterday. It's kind of like a big LayZBoy. First they laid it flat like a bed. Then three or four nurses (including a strong male one!) slid him from his bed to the chair. After they strapped him in, they moved the chair into a reclining position. They propped him up as comfortably as possible, then they immediately got to work on giving him a breathing mask because his sats (oxygen saturation in his blood) dropped significantly.

I felt I needed to give a little more detail as I realized last night's post sounded like he was sitting in a regular chair by himself. We're a loooooong way from that! He couldn't even handle a wheelchair at this point.

Scott just called me at home from the hospital this morning. Looks like part of Neil's lung is collapsed. That would explain the low sats we saw yesterday--or maybe the low sats caused the collapsed lung? They will be giving him a bigger breathing mask and doing some kind of breathing treatment that involves patting him on the back. If these don't work, he'll probably be intubated again. Sure hope these are only minor set-backs. I'll post again this evening to give you an update.

--Lori

A Day of Rest

After a good workout, doesn’t everyone need a little break? So it goes with Neil. No balloon games today. He did get to sit in a chair for four hours for a change of pace. It kind of messed with his breathing a little since he’s been on his back for over three weeks, but he looked pretty comfortable. He had to wear an oxygen mask for a while. Now he’s back to the little tubes in his nose. I think he has slept most of the day.

One less tube to deal with now—they’ve taken him off his IV fluids. All his nutrients and fluids come through his feeding tube. Everyone is working toward getting him ready for rehab. They’re saying maybe tomorrow or Tuesday. We’ll let you know when we do.

--Lori

Fresh Air

No trach, no tubes in the mouth, no ventilator! Since his extubation at around noon today, Neil has had a little oxygen through his nose. Little by little, the nurse has turned the oxygen down, and soon he will be completely on his own. Thanks to Dr. Bagner’s unconventional call on the breathing tube, looks like we won’t have to deal with a trach. Yay!

Neil has a new favorite game. Some friends brought him a valentine balloon tied to a little monkey. We put it on the end of the bed and Neil kicks it with that amazing right leg of his. This is not as easy as it sounds. It takes a great deal of concentration, a few false starts, and several agonizing minutes before he makes contact. Even though we call it a game, it’s a lot of work for Neil. We’re so proud of him for his persistence.

As I write this post, Scott and I are sitting by Neil’s bedside. We are talking to him and singing him some old family favorites. Neil is reaching his foot over his left leg to touch us and it feels like the sweetest caress. We are literally kissing his feet. I can’t express how much we love this boy.

A Leg Up

So it looks like Neil has some control over his constantly-moving right leg. Last night, Scott got him to lift that leg up when he asked him to. Neil lifted his foot to Scott's stomach and when Scott said to push, Neil pushed! When he asked him to lift his leg higher, Neil's toes inched their way up to Scott's chest. He seemed to love the contact that he could control, and they kept up that game for hours! So long in fact, that Neil was worn out for me this morning. He lifted his foot to my stomach and onto my arm eventually, but he seemed very tired.

I think his fatigue came from more than just a long workout the night before. For three days now, they have been withholding his food for different periods of time in preparation for expected surgeries that never happened. After a nearly three day fast, you'd be pretty tired too! Well, today Neil was finally equipped with a feeding tube in his stomach and a cool filter in his inferior vena cava. Tomorrow he'll get his food again, so we're looking forward to more purposeful movements and eye contact.

And speaking of movements with a purpose, etc., no neuro evaluation or Glasgow Coma Scale today. Hopefully they'll do it tomorrow after he's feeling strong again.

Thank you again and again for the many kind and thoughtful notes and gestures we have received. I don't know that this marathon roller-coaster ride would be possible without the love and support we have felt from so many people. You are wonderful!

--Lori

Rocket Man

As of around 4:30 when I left the hospital this afternoon, Neil's routine had been pretty much the same as yesterday--a little bit of labored eye contact, some random limb movements, and lots of sleeping. Apparently, he saved the big show for his dad's shift this evening. Scott just called to tell me Neil is quite alert and definitely looking at him and at things as they move across his field of vision. He quickly turns his eyes to sounds. His focusing just seems to get better and better. Like any muscle that hasn't been used for a while, it's just taking some time to get his eyes back in shape.

Today, Neil was fitted for his helmet. Yes, he gets to wear an awesome space helmet...lucky guy! Because he is temporarily missing half of his skull, he needs to be very cautious about protecting his head. After much deliberation, I decided to cut the rest of his hair. The ICU worries about having a sterile environment for the patient's health, but they really don't care too much about hair care. So after three weeks, Neil's long hair was looking pretty gnarly. I trimmed him up the best I could, but I think he's got a little mullet thing in the back where I couldn't reach!

Tomorrow they will rate him on the Glasgow Coma Scale to see if he is alert enough to have his breathing tube removed altogether. If it's too low, they will do a tracheostomy. Either way, he should be ready to move to the rehabilitation facility very soon.

Just one more thing--We are missing our friends Glen and Regina from room #4. Regina left for rehab yesterday. Glen is still waiting for her to wake up, but she is medically stable enough that it's time for her to be in a place that specializes in stimulating her brain. It has been very therapeutic for us to have a friend that knows what we're going through. It looks like Neil will be going to the same facility, so we're looking forward to continuing our mini "support group!"

--Lori

Eyes Wide Open

We had about an hour and a half this morning, and a couple of times this afternoon, when both of his eyes were fully open. Neil was really struggling to make them work together to look at us. He would get a face in view, then gravity would pull his pupils sideways. We’d clap or call his name, and he’d work once again to try to focus. Lots of movement in his right leg today. Still waiting for some response to commands.

Dr. Bagner is so pleased, he’s postponing the tracheostomy again. He still has this feeling that Neil won’t need it. No one else agrees, but I like him for believing in Neil. So, no surgeries today. (We’re waiting for three: trach, PEG, and IVC filter.)

Here’s a shout-out to Neil’s cousin Meghan and her new little bundle, William. Will was born this morning shortly after Meghan’s arrival at the hospital! If you didn’t already know it, Neil’s first name is William. So is his dad’s. So is his grandpa’s, Little Will’s great-grandpa. Good name, Meghan! Congratulations to you, Carson, Siobhan, and Audrey!

Looking for New Digs

Visited a couple of rehabilitation facilities today. The hope is Neil will be ready to move out of the ICU within a few weeks. He's getting tons of good care here. They listen for the monitors, take his temperature, change his position, adjust his breathing tube, administer meds. What they don't have time to do is look in his eyes, read to him from a favorite book, hold his hands, and try to wake him up. That's what rehab is for (or moms and dads!). As soon as he doesn't need the constant medical attention, he'll be ready for the real work!

Neil's trach is scheduled for tomorrow. Thursday he'll get his PEG. Then, no more tubes in his mouth! Next, they'll try to wean him off of the ventilator all together. Eventually, they'll take out the trach and he'll just have a little scar in his neck. Kind of like a war wound. But, I'm getting ahead of myself. Guess I'm a little antsy while we're waiting for Neil to wake up!

He's still trying to make eye contact. His lids are a little lazy, but everyone keeps telling us it just takes a long time. Patience, patience...

Teeny Tiny Steps

So, more of the same. He sleeps for a while, then he opens his eyes...or at least his left eye. It takes some work, but eventually he locks on to a face and stares for a short time. If I hold up a sock monkey or a crinkly balloon he will sometimes look over at it. He likes to look at a busy poster some friends made if I hold it up in front of him, but I don't think he's quite figured out what he's looking at.

Teeny tiny steps forward and no steps back. It's still progress!

Hold on to Your Hats...

...Neil is looking at us! He can open his left eye quite a bit more, and his right eye a little. It looks like he’s trying to focus on our faces. And his eyes move! He will track a face or an object a little bit. You can tell it’s a lot of work for him, but we’re applauding his herculean efforts. I just get the feeling he wants very badly to interact. He has lately been moving his right leg and lifting his right arm to pick at the monitors taped to his chest. He uses the left side too, but not as much.

We're just as pleased as we can be and so is his doctor. We're hoping this is just the beginning of many more little signs of our awakening giant!

--Lori

Another Quiet Day

Neil goes through patterns of alertness and sleepiness. When he seems to be in his wakeful state, we bend down low to look into his partially opened left eye. We talk to him and sing old lullabies and silly family songs. We play some of his music (thanks Chloe) and some of our music. Why our music, you ask? Well, which one might wake him up--music he loves, or music he hates? :-) We don't know, so we'll try anything. He blinks his eyes, moves his right hand, and occasionally shrugs his shoulders--again, not in response to what we're saying. But maybe it's in response to what he's feeling. Maybe he knows we're there and he wants to connect. Maybe...

If you're getting a little bored with nothing happening, I understand. I'll keep posting everyday--even if there's nothing to report, but I'd suggest you maybe check back only once a week. This is going to take a while. Then again, you'll want to be there when we report the good news... It's up to you. :-)

These Boots Were Made for Walking

Yay! A picture Sister Alison, Uncle Joe, Neil, Aunt Shelly, Cousin Meghan

When Neil was born he had what was then called "club feet." The doctors put tiny little casts on his newborn feet and legs for a few weeks, then he was upgraded to these cool booties connected with a bar. (The bar actually made a nice handle for diaper changing!) Eventually the bar came off and he learned to walk in backward shoes. Neil's left foot never did straighten out entirely, but it never slowed him down.

Neil's wearing different boots now for almost the same reason. Patients who are in bed for a long time tend to get "drop foot." The achilles tendon tightens up and it can be very difficult to stretch it out enough to walk again. So Neil wears these adorable, sheepskin-lined Uggs at various times throughout the day. They're open at the toes and heels so he doesn't get too hot. To add to this stylish ensemble, he also wears air-filled leggings on his calves. Tubes full of air massage his legs to help keep blood clots from forming. I'm telling you, this guy is quite the trend setter! All the patients in the ICU seem to be wearing them now!

Not a lot of change since yesterday. His eyes are opening a little more, but still not focusing. Kind of a quiet day. Talking to various rehab facilities about where he'll be moved to when the time comes. We'll keep you up to date.

--Lori

Blessings--Part Two

If you can't wait to see Neil's progress today, scroll down to the bottom of today's entry. If you can tolerate a mother's thoughts for a minute, read on:

How can you see your child go through something like this and feel like you are being blessed? I don't know how to explain it, but I've never felt the presence and love of my Heavenly Father more than I have this past almost-two weeks. He has not left us comfortless. He knows and loves us. We receive his tender mercies daily.

Here are a few of the many blessings we've experienced through this crisis:

A greater appreciation for our children. We've always loved them passionately, but we have spent a great deal of time lately thinking about the joy they bring to our lives. We ponder on Neil's compassionate heart, Alison's wise insights, and Eric's affectionate nature--just some of their valuable qualities. We've been given the chance to raise and nurture such amazing individuals.

The chance to say and hear "I love you." I have said it again and again to friends and family. What used to be a sometimes-awkward expression saved for special occasions falls effortlessly from my lips lately. One of the dearest messages of comfort on the first day after the accident came as a text message from my sister. It said simply, "I love you so much." My brief reply, "I know." And I do.

The opportunity to receive the charity from others. We have been so humbled as we have felt the concern and love of others. Prayers, calls, cards, visits, food, rides, hopeful thoughts from family, friends, and even strangers who aren't strangers any more. We know each person who shows kindness to another receives blessing in return. So we are providing the chance for others to be blessed by their filling our needs!

Visits from dearest loved ones. Scott's mother has been here faithfully since the Sunday after the accident taking care of us and and providing some stability for Eric. Aunt Shelly stayed for a week giving us strength and lifting our spirits. My mom comes today because I need her hugs and she needs to give them. I know any one of our family would be here in a heartbeat if we called. We love them all!

Connecting and reconnecting. We've always liked Neil's friends and they have proven to be loyal throughout this ordeal. We are grateful for their kind words and comments, their visits, and the love they've shown him and us. We count them as our friends, too. And we're finding there is a web of friendships and family that we've taken for granted. We've been the recipients of messages of support from loved ones we haven't connected with in years. Thank you, thank you!
Cherishing our marriage. As we've held vigil by Neil's bedside Scott and I have discussed, and tried to prepare ourselves, for all the possible outcomes of this situation. We have taken turns being "the strong one" and cried on each other's shoulders. We have been partners in a circumstance that we couldn't have imagined being able to endure before this. I love this man!

Okay, enough heart-sharing! Time to get down to the business of Neil:

Every day shows a little progress, but be warned, I really mean a little. At times he appears to be trying to open his eyes. In fact, his left eye opens about 1/3 of the way, but he doesn't focus or follow anything. He has a firm grip with his right hand, but he doesn't squeeze on command. In fact, so far he hasn't reacted to anything we ask or say, but we continue to talk to him. They've added another antibiotic to fight whatever infection may be causing his continued fever. I don't think I ever mentioned his neck brace. It's been on since we first saw him, just in case of unknown neck injuries. Results from yesterday's MRI showed no injuries, so they removed the brace today. Now we can see this boy's grown quite scruffy since Nurse Nancy shaved him last week! It's almost hard to recognize him with his fuzzy goatee, his half-shaved head, and his metal staples. A little too out-there even for our crazy Neil :-) I think he'd get a kick out of this make-over!

Blessings--Part One

Progress

Neil wants to wake up...I think. He is off the medicine that sedates him, but he's still receiving something for pain. I'm sure that has some sedative properties by itself. The ventilator is set on CPAP--meaning he is taking his own breaths, but the machine gives him a little boost. Now Neil is moving. Just a little, but hey, we'll take that! His right hand appears to be either texting, or involved in a really intense video game. When I hold it, I get to feel like he's squeezing my hand :-) His eyes haven't opened yet, but the lids appear to be moving almost like he's blinking. He opens his mouth to yawn, and he has a fairly strong cough. Every little twitch gives us a thrill!
He's still fighting the fever, but doctors are on top of it and not overly concerned.

Over and over again we're told it's going to take a loooong time, so we're trying to be patient.

More good news: We've finally located Neil's wallet and awesome shoes! We have been trying to track them down for some time now. Turns out they were stored here at the ER under the wrong name. Many thanks to Jennifer J. and her connections for solving the mystery.

Here's the Latest

Not all doctors agree. And we've seen a lot of doctors with a lot of different opinions. Although he doesn't interact with Neil as much as some of the other doctors, Doctor Bagner is his attending physician and he makes the final call. So Neil will probably not be trached until next week. I have mixed feelings for Neil. I know he hates the breathing tube, but Dr. Bagner says there's a chance we may not have to trach him at all if he can start to breathe on his own. Come on, Neil!

Still fighting an infection. Looks like it's his left lung. It's not pneumonia, fortunately, but they're treating him with antibiotics. Hopefully that will bring down this annoying fever. I hate to see Neil so uncomfortable.

The bolt monitor came off today! That means they're not worried about his ICPs anymore. The radical skull surgery worked. Thank you, Dr. Danish!

They are now slowly trying to wean him off the sedative and pain medication. A physical therapist showed me how to exercise his hands and arms. I love the interaction with him and I'm looking forward to the time when he'll be able to respond.

More good news: Neil got his acceptance letter from BYU Idaho today! We're so proud of him. Hopefully it will provide some motivation for his recovery.


--Lori

Random Things

WARNING: Because I'm feeling quite inadequate, and a little embarrassed, trying to describe medical things I know so little about (I know you medical types have been snickering politely), I've included throughout this post some links to more accurate explanations of what's going on here at the RWJUH ICU. Some of these linked articles might be a little too graphic for your tastes so click on the highlighted text at your own risk.



Another feverish night for Neil. They're running some cultures, and we hope to find out by tonight or tomorrow what might be causing his high temperature. Fortunately, his ICPs have come way down and seem to be staying there. They would like to trach and PEG him tomorrow if his fever isn't a problem. (See, I told you they change they're minds!) They're also going to put an umbrella-like filter in a vein through his leg to prevent clots from his legs reaching his lungs.

Remember how I told you about his hemicraniectomy the other day? Well, here's some interesting info about that: they are storing his piece of skull in a freezer somewhere to reattach later. For some patients, they actually put the piece in their abdomens temporarily to keep it alive!

Obviously, if you're going to have surgery on your head, the doctors are going to have to shave your hair, so Neil is now partially bald. Just half of his head, so he has a hemi-haircut. You know we wouldn't have done that to him if it wasn't necessary!

Thank you for your continued prayers, hopes, cards, and good wishes.


--Lori

Another Lesson in Patience

The doctors are pleased with the surgery. But apparently Neil isn't quite ready to give it a go without sedation. After he had a good neuro exam--movement in each of his limbs, pupils responsive to light, attempts to cough and open his mouth--his ICPs went up and he developed a fever last night. It took some time, but his fever's down now and he's being sedated again to give his brain a little more time to rest. We enjoyed the time we had to sing him songs, squeeze his hands, and have him squeeze back, but we'll get another chance when he's ready again. I hate to keep saying this, but we're not to the point yet of saying Neil is aware of anything other than simple stimulus. When he squeezes my hand, my mother's heart says he knows it's me, but no doctor would ever agree with that.

On Wednesday, we're expecting Neil to have his tracheostomy. We like it when they give us specific time lines and dates to look forward to. (Of course, they've changed their minds before.) When he was not sedated last night, I really got the feeling he didn't like the breathing tube. (Who would?) So this is a good next step. I'll let you know when that happens.

I wish we could respond to all the thoughtful, kind, and uplifting comments we receive here. Please know that we do read them and appreciate what you've shared with us and others. Also know that we are very aware of the many positive thoughts and wishes that go unspoken and unwritten. We feel them and know that you care.

--Lori

P.S. Glen and Regina here at the ICU could use your prayers too. Regina came here a little before Neil, under similar circumstances. Glen is patiently and loyally waiting for her recovery.