Saturday, February 28, 2009
Friday, February 27, 2009
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.
Thursday, February 26, 2009
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!
Wednesday, February 25, 2009
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.
Tuesday, February 24, 2009
P.S. No hip issues. Maybe his wriggling is just normal for someone with a TBI.
Monday, February 23, 2009
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.
Sunday, February 22, 2009
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!
Saturday, February 21, 2009
Friday, February 20, 2009
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!
Thursday, February 19, 2009
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!
Wednesday, February 18, 2009
Tuesday, February 17, 2009
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!
Monday, February 16, 2009
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. :-)
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.
Sunday, February 15, 2009
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.
Saturday, February 14, 2009
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.
Friday, February 13, 2009
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!
Thursday, February 12, 2009
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!"
Wednesday, February 11, 2009
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!
Tuesday, February 10, 2009
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...
Monday, February 9, 2009
Teeny tiny steps forward and no steps back. It's still progress!
Sunday, February 8, 2009
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!
Saturday, February 7, 2009
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. :-)
Friday, February 6, 2009
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.
Thursday, February 5, 2009
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!
Wednesday, February 4, 2009
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.
Tuesday, February 3, 2009
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.
Monday, February 2, 2009
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.
Sunday, February 1, 2009
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.
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.