An Introduction to Rehab!

We know. We know! You're all wondering what rehab is like!!! We were too -- it's been a very full couple of days for Thomas and Natalie as they settle into a whole new routine. Natalie sent us an update yesterday, and it's just chock full of awesome information.  Rehab is good. But it's hard too.

Here's what she reports:

• Thomas has an extensive team of specialists, therapists, and doctors who are committed to him and his case. Other than a rotation of nurses, the rest of his team, at large, will be consistent.  They will get to know each other and can best evaluate progress and his needs.
  
• His days start at 6:30 am with breakfast. Every day he is given a printed hourly schedule and from this they move him through his day, one type of therapy session to another, until about 4:00pm! There are no sessions on weekends, though Thomas is hoping he'll be able to do some "work" on Saturdays as well. Some sessions are in his room and others are in the main gym.
  
• Unlike at the hospital, he has his own of everything, meaning, his own wheelchair fitted to him, etc. It saves a lot of time that they aren't constantly starting over every day.   

Thom's progress thus far:

• During his first evaluation with his primary doctor, we learned that, while Thomas' fracture is C-5, his injury is actually considered / classified as a C-6.  This score has to do with a whole lot of factors, but basically Thomas has sensation and function below the C-5 level and consistent with C-6. So that's cool!

• His first morning in rehab he was taken off trach collar completely, which means he is receiving no oxygen from an outside source. He is no longer attached to anything whatsoever!  Perhaps this should have been the first bullet, because it's downright amazing to see! 

• Equally amazing, Thomas wears his speaking valve all day long and only takes it off to sleep! Awesome! With ease he is able to communicate all of his needs, ask questions, and be very involved in his therapy sessions.

• His secretions are almost completely gone! He said it's totally unreal. All the pain, and struggle, and work he had to do weeks ago to just be able to breath, and now it's nearly all gone. (Natalie writes: "I count this among our miracles :)  He is so happy!")

• Upcoming, they will downsize his trach and will start putting a "block" on it for short periods of time.  Once the "block" can be tolerated for a full day, the trach can come out. The "block" forces Thom's airflow to only be through his mouth and nose, like we all breathe, weaning him off the trach. (A fun side note, the doctor who will be working on this has a 100% success rate in getting patients off trach support. Thomas is in good hands!)

• He passed his swallow evaluation in 5 minutes flat! He no longer has any restrictions whatsoever! The first thing he asked for was a Dr. Pepper :)  His appetite is finally back and he is eating great! He said the food is actually really good. They get the week's menus in advance and Natalie helps him pick all his meals. (Your RB is thrilled to report that they use some local and organic ingredients - a big improvement from the hospital's offerings.)

• His pain is still under control, in fact, they were able to wean him off a little bit.  He gets a little neck pain from time to time, but it's really more sore muscles from working hard - and that's a good kind of pain!  

• And speaking of his neck, he can move it a lot more to look around.  It's still stiff from the surgery, but some movement / flexibility coming back - and they expect much more as the weeks go on.

• He has a cool strap for his hand to help him feed himself - he's getting pretty good at it, with a little assistance. It's a lot of work though, so his meals mostly have to be fed to him still. But he's practicing. He can also hold his own cup, or small bottle, and bring it up to his mouth for a sip. His arms are considerably stronger even in the last 3 days...he can even make the sign of the cross once again - something he's been working hard at! 

 

We'll be updating every other day, now -- giving some insight into the different exercises Thomas is doing, etc. Let us know if you have any questions! And thanks, as always, for your support!

PLEASE NOTE: Thomas does have a roommate, and his room is very small, so please do not send gifts, flowers, balloons, etc. There simply isn't room for it all. Cards are welcome, as always, and can be sent to the National Organization for Marriage at the address listed at the bottom of this page.

Join us in prayer!

Weekly Update: Rehab Soon!

Thomas had a very packed morning as they tried to get everything prepared for him to be released to rehab. His hair was washed, OT and PT spent an hour and a half with him doing all sorts of therapy and charting to send NRH the most up-to-date information possible.  He sat up for 2.5 hours in his wheel chair and then took a nap. Your resident blogger brought up a big meal of fresh and nutritious food, and Thomas ate a ton! 

As far as the hospital is concerned, they have done everything to meet the standards of admittance to the rehab facility: he is infection free, he is eating well, his feeding tube was removed Monday afternoon, he is no longer on the ventilator (the trach collar is accepted), he can tolerate sitting for long periods of time, he successfully made the transition to all oral meds and his secretions are improved to the point that he can get much up on his own or be assisted with chest PT rather than cough assist (chest PT consists of rolling him on his side and patting his back, or just letting him lie on his side for 10 minutes at a time to loosen secretions). 

So, they hope to be discharged within the next day or two. Please pray they don't have to stay another night, and that everything goes smoothly with the transfer. They are very ready to leave and ready for the next phase! As Natalie said to us: 

"We know the road ahead will be long, our perseverance and patience will be tested, and the outcomes unknown; but truly, we are eager to begin and filled with thankfulness to be moving out of the critical phase to the recovery phase."

As always, this couldn't have been done without your prayers and support, so thank you! And please continue to join us in prayer!

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Week Five: Eating Mush!

It's been five week's since Thomas' accident, and two weeks since our last update. This time last week, Thomas was in the middle of his second surgery, and this week, though hard, has been very good as well.

TREATMENT OF THE INJURY
The surgery was successful, as you all know. What you may not know is that, incredibly, the injury in his neck is completely fixed! It's rather extraordinary that a surgery can just fix things entirely. Don't get us wrong: he has a lot of work to do: he has to strengthen his neck and shoulder so he can hold his head up better, but he can turn slightly, looking to the left and the right, and mobility will improve as the weeks go on, and his neck pain will diminish. The neurosurgeon even cancelled Thomas' post-surgery MRI, deeming it unnecessary. He is in a neck brace, and will continue to be so for at least six weeks.

RESPIRATORY CONCERNS
Thomas continues to work towards being entirely off the ventilator. Though he had the breathing tube for the two days of surgery, this didn't really slow him down, and every day he spends longer and longer off the ventilator. Monday he was off the ventilator for 19 hours; Tuesday off for 18.5 hours; today's goal is 24 hours. To be released into rehab, he needs to be off the ventilator for several days without assistance.

EATING + SWALLOWING
As we reported yesterday, his swallowing test was positive, and Thomas was cleared for eating soft soft foods / thickened liquids (like applesauce).  Yesterday was his first try, and he ate a few bites of food at lunch, dinner, and dessert.  Just for yesterday, blue food coloring was put in everything he ate -- a precautionary measure -- if no blue showed up when he was suctioned, they knew all was well. Pretty clever.

Thomas did better at dinnertime than lunch, and will continue to improve with practice. They are definitely taking baby steps with eating as he relearns how to swallow and works on those muscles. They are exploring different textures of foods provided by the hospital; some textures are more challenging than others.

PAIN + FEVER
His pain medications seem to be at a much happier balance now, which is great! He continues to have fevers starting around 2/3pm and lasting through the night. They have been watching these closely, giving him Tylenol, and looking into causes. They're 95% sure he has no infection causing them, so it's most likely because of his injury which they said is not uncommon.

MOBILITY + PHYSICAL THERAPY
Thomas is browsing and reading on his kindle now, which is awesome! He and Natalie devised a way to prop it up and he can use his right pinky knuckle to scroll pages, return to his home library, and select a different text! So cool!

Every other day Thomas has a visit from either physical therapy or occupational therapy. These teams alternate exercises to stretch and strengthen his upper and lower body. They have also taught him exercises for his hands, wrists, arms, and shoulders that he can do on his own, and some exercises that Natalie can help him do as well.

REQUEST: TRAVEL
Most of Thomas and Natalie's family has been able to visit while Thomas is in the hospital, thanks to the generosity of family and friends. Natalie's sister and brother-in-law are still hoping to come out and visit sometime in the next couple weeks. If anyone has airline miles they can spare to help purchase a plane ticket, please email us at the blog address. (A lot of companies let you donate miles, but there is a pretty high charge for this. What we're looking for specifically is having someone redeem their miles for two flights.)

As always, thank you for all your generosity and prayers!

The Novena of Thanksgiving continues. Join us in prayer!

Week Three

It's been three week's since Thomas' accident, and a week since our last update. 

On the surface, not much has changed: Thomas is still wearing the HALO, he is still spending a lot of time on the ventilator, he is still fighting an infection, and we are waiting on a surgery date. 

On the other hand, much is different from our last check in: Thomas is taking long periods of time off the ventilator, and breathing on his own; Thomas is practicing with a speaking valve, as well as working on swallowing foods; he's begun physical therapy for his legs and stretches for his arms. 

TREATMENT OF THE INJURY + INFECTION

Yesterday all of his specialists came to a unified decision to wait on surgery, because of Thomas' infections. Thomas was started on a new regimen of antibiotics to tackle that (praying he doesn't have a reaction this time - last time he got a rash).  They are giving his trach some extra wound care and keeping an eye on his white cell count.

They continue to sit tight and focus on other goals at the moment. Keep praying that the infection clears and that his surgery will take place as soon as possible. The back and forth waiting game is obviously very frustrating for Thomas and Natalie.

HIS LUNGS + PHYSICAL THERAPY

His lungs continue to improve. On Monday, Thomas was off the vent for a record of 6.75 hours! And he had a second shorter session that night. Tuesday he did two more amazing session off the vent - 6 hours & 6.75 hours. Sadly he won't be allowed to sit in his wheelchair until after surgery - they are worried it's getting to be too much moving and shifting and they don't want any new damage to occur. Rumor has it he is getting a different bed that can be put in the chair position - a position crucial for his diaphragm and lung strength.

Physical Therapy continues each day. Thomas and Natalie have been given stretches to do and tools to help Thomas strengthen his arms, and stimulate the muscles in his legs, and keep his circulation going. He is able to eat foods, but is sticking to ice chips still. (Having seen the food they deliver, your resident blogger can't really blame him!)

He is in good spirits, and getting lots of rest. The chaplain comes up every few days Yesterday he asked to watch a movie for the first time. And last night he was in great spirits because he got to see his mom and sisters, who are in town for a few days.

Keep praying specifically for the healing of his infection, for patience and fortitude in this time of waiting, and for his lungs!

REMINDER: we are in Day 2 of the Novena to Servant of God Luisa Piccarreta, to whom the Natalie's family have a particular devotion.

Join us in prayer!

Week Two

It's been two weeks since Thomas' accident, and a week since our last summary.

Natalie writes that "yesterday was a really good day for Thomas and for us.  He was in a great spirits and had much more energy than the last couple days, which was great to see! He spent 3 hours sitting in his chair while we talked about all sorts of things, I read him articles, and he asked to read his emails....as you probably already know, he asked to post to twitter!  His pain was under control and today was the first day he didn't suffer from shoulder pain - either the meds are working or it's beginning to heal!  He kept saying he felt great and wanted to go home. He fell asleep at 9, totally exhausted; a good day indeed!"

Here's a quick recap of his injury and where the treatment stands. 

TREATMENT OF THE INJURY

An MRI on Sunday evening revealed that the HALO is not stabilizing the fracture, or allowing the C5 vertebra to fuse on its own. Surgery is now necessary.  (But, thankfully, not emergency surgery.) It will hopefully take place on Friday. 

Thomas and Natalie are grateful to have tried the "natural" method, and the doctors assure him that this will not setback his physical therapy or lung treatments. The surgery is technically an "out-patient" surgery (which just about blows our minds! If the spine isn't "in-patient" then what is?), meaning if Thomas were in the best of health going into the surgery, he would leave that day!

The surgery will likely exhaust him for a day or two, but it shouldn't delay his overall recovery any more than that, God willing. 

TRACH + INFECTION

Thomas had a tracheotomy on Thursday of last week. This removed the dreaded breathing tube, which is a huge relief for everyone.  Unfortunately, an infection developed around the trach, which they are fighting with topical and IV antibiotics. After three days on antibiotics, it seems to be clearing up, and his fever has gone down. Thomas' neck surgery cannot happen until the infection is gone.

LUNGS

He continues to be on the ventilator in CPAP mode for considerable portions of the day. Yesterday was his record: 6 hours of breathing on his own! (Though his nighttime Respiratory Therapist told him to take it easy, and not push himself too hard!) His lung treatments continue every four hours, shaking up any mucus buildup, and strengthening his diaphragm and lungs, so that he can ultimately breath on his own. Please keep praying for his lungs. This is the major goal of each day, and a lot of physical therapy, speech therapy, and communication goals cannot be addressed till he is off the ventilator during the day.

COMMUNICATION

Speaking of communication: it is greatly improved now that the breathing tube is gone. A lot of tracs have a voice box, but his does not yet because it is still hooked up to the ventilator. Until he is off the ventilator for long periods of time, it is not really possible to have a voice box. (But soon, we hope and pray!) 

Instead, he is able to mouth words and Natalie reads his lips, and is able to figure out what he is saying almost always though there is sometimes some back-and-forth. (Natalie writes: "I give us an A in newlywed communication.") She definitely gets an A! Your resident blogger tried to read his lips and it took so much concentration and practice! (The nurses are pretty good at it, too, but that's their job!)

PHYSICAL THERAPY

Thomas has had one visit from a speech therapist, who asked him to practice swallowing ice chips. He is anxious to have another visit: he's definitely got ice chips/swallowing down and is eager to get the green light to sip water!  Meanwhile, he continues to use his hands to hold his suction tube, and other objects.

Natalie and Thomas want you all to know how grateful they are for all your prayers and love and support. She has been sharing your messages as she is able, and Thomas has energy to listen. They are overwhelmed and very very grateful. Keep praying!


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One Week

It has been a full week since Thomas' accident and diagnosis of a broken C5 vertebra. Since much has changed in the past 7 days, and since these quick "status updates" don't really give you a full picture of his situation, Natalie asked that we share with you a fuller picture of Thomas' accident, and some peeks at what's next in Thomas' recovery. We'll try to do a longer post like this every week, to give context for the daily status updates.

THE INJURY + TREATMENT:

Thomas has a "unstable tear-drop fracture" in his C5 vertebra. Or, more specifically: a C5 flexion tear drop fracture, C3-5 ligament strain, C5&6 disc tear. Dr. Peters sent this information along:

The joints above and below the C5 vertebra are the most mobile of the entire cervical spine, which explains why it is common to fracture C5 in traumatic accidents.  In cases of severe neck flexion (i.e. chin to chest) that are accompanied by loading through the head, the C4 vertebra and C6 vertebra pinch C5 anteriorly. The resultant compression on the C5 vertebral body can break-off a teardrop-shaped piece of bone. 

The fracture can then slice the ligaments that run on either side of the vertebral bodies. Ligament damage results in a stack of vertebrae that are not stable. That instability can ultimately compress/shear the spinal cord if one or more in the stack shift position. Cord damage can also arise directly from the fracture (i.e. cord is sliced); but this is less common, as teardrops are usually on the -anterior- side of the vertebral body, not on the posterior side in direct contact with the cord. Vertebral instability can also result in compression of nerves that are passing in/out of the spinal cord, leading to peripheral nervous system lesions.  Hence, a halo is necessary to keep the stack from shifting until C5 heals.

A halo ring and vest brace is used to restrict head and neck movement after a fracture or neck fusion. It consists of 3 parts: 1) a fleece-lined plastic jacket that is worn on your chest; 2) a lightweight metal ring, or halo, that is fastened to your head with four pins; 3) Four rods that extend from the vest upward and attach to the ring. (Source: scroll down)

The halo was "installed" (we don't like that word either) on Friday. It is heavy, and awkward and uncomfortable, and Thomas still tries to nod his head too much (but when the breathing tube is removed, this shouldn't be a problem, because he'll be able to speak). He is handling the pain well: by Sunday night he was off any form of sedative, and every day his pain medication is reduced.


DOCTORS AND NURSES:

Thomas is in the Shock Trauma unit, on the floor dedicated to neck/spinal/neuro trauma. The team is highly specialized and very, very capable. (Thank you everyone for your words of support in this regard. We didn't doubt that they were the best, but we love hearing it from so many people!)

Every morning the neurosurgeon on duty visits each patient with their team of doctors/fellows. After a week, several surgeons have seen Thom and each one has been able to teach us something new! Oh, and they all wear pale pink scrubs, because pink is apparently the most neurologically soothing/comforting color. Good to know.

Thomas also has two nurses every day, and these are mostly the same people: Becky and Meredith have been working with him the most, and they are both fantastic! Becky is very patient, explains a lot, and has super fun Warby Parker glasses (Thomas loves Warby Parker). Meredith is very no-nonsense, while being just chatty enough to learn something of Thomas' personality. (We're mentioning them both to give you a better idea of the days, and because we hope they'll be his nurses for a while!) Yesterday Thomas' nurse was Dan; he has very self-depricatory humor. There is a "Nurse Ratched"--there always is. And a nurse from upstairs (Tina) did night duty on Sunday, and spent a hour explaining what drugs Thomas was on and what their side effects were, etc. etc., which was very, very helpful.

And then there are the Respiratory Therapists, who come in every four hours to give Thomas his lung exercises. They change daily, and mostly just come in and do their job. But some are helpful and informative, as you'll see below.


HIS LUNGS:

Thomas has been on a ventilator since his first night. Once the neck was stabilized, they began treatment of his lungs every four hours, using the ventilator. This treatment helps exercise and stretch the lungs, but it also shakes them up to release any mucus that is building up, to help prevent pneumonia. He hates this treatment, needless to say.

Monday's surgeon explained exactly what was at stake with his lungs: that they were trying to wean him off the ventilator, but that if he wasn't off the ventilator in ten days, they would have to insert a tracheostomy. So Mrs. Z (Natalie's mother) and Mrs. Peters (Thomas' mother, not Natalie! ;) began a novena for Thomas' lungs (as we mentioned).

On Monday night, the Respiratory Therapist told us they had switched the mode of Thomas' ventilator that afternoon, because Thomas was breathing entirely on his own! For four hours he had been breathing on his own, and we didn't know! It was super exciting! The ventilator is still on, in "Pressure Support" or CPAP mode. Now instead of actually inserting air in the lungs it is only supporting the lungs, so that when he exhales they do not collapse (this is what mode sleep apnea patients use). This is the lowest possible mode. Wonderful news!

Tuesday's doctor explained that Thomas needed to work on coughing, so that they know he can cough up any mucus that might build. All day his lungs and diaphragm continue to improve and he is very close to where he needs to be for them to take out the breathing tube!

MOBILITY + MENTALITY:

Thomas is very mentally alert, and very himself. We keep telling you this, but let's show you what we mean: He's cracking jokes (literally spelling them out word-for-word). He gets frustrated when we don't understand him. His pain does fluctuate throughout the day, but so far, they are able to keep his pain managed and watch it very closely. On a good day, his pain hovers around 3 on a 1-10 scale. He is calmer, happier, better when Natalie is around. 

When someone mentioned that she was given a bottle of very nice cognac, his eyes got big and wide and excited. When someone else suggested that when he has finger mobility, he could start doing technical piano strengthening exercises like the Pischna method, he said no, and started miming playing  piano-- not Pischna, or Bach, but Chopsticks!

But Thomas is not at mobile at all. He must be moved into different positions, while he is lying in bed, by the nurses. (More on the wheelchair below.) He can move his arms, shrug his shoulder, and he is gaining dexterity in his fingers: monday he pointed for the first time. Tuesday, he was using his pointer finger much more. It was a little victory when Natalie was praying the rosary out-loud, that he folded his hands together (loosely) while listening/praying. 

We have every expectation this will continue to increase -- as he gets stronger, and as the swelling goes down around the injury (which can take several months, honestly). He has not intentionally moved his foot or leg again, but still has sensation there. We need to keep praying for these things!

THE WHEELCHAIR:

It is a pretty arduous process to get into the wheelchair (they make Natalie leave the room). It's a very straight, high-back chair which gives him necessary neck and spine support.  Sitting up in the chair is a great way to build up his muscles, especially those in his diaphragm. And eventually he will have to support the weight of the halo alone: these are the baby steps.

On Monday, as you recall, he sat in a wheelchair for 90 minutes. Yesterday was even better! He sat in a wheelchair for almost four hours! He watched two episodes of a favorite show, prayed the Divine Mercy chaplet, and Natalie read to him.  

These steps forward do come with consequences; sitting up and supporting his own weight, and that of the steel halo, results in increased head and neck pain later in the evening. But the progress is great, and it is obviously worth it!


WHAT'S NEXT:

The main goal right now is to get off the ventilator! But he keeps accomplishing goals in that regard without us even knowing it, so we're very hopeful! He'll have a sore throat for a few days, but then he'll be able to speak, which will be wonderful!

Then they'll start discussing the next steps in Physical Therapy. One day at a time!


QUICK NOTE OF THANKS:

Natalie wants you all to know how grateful she is for your words of support and encouragement and prayer. She is saving them all for when Thomas has enough energy to read them, but can't wait to share them. In the meantime, feel free to keep sending cards and emails, writing comments, and please continue to pray!


Join us in prayer!