1/28 - Sam's Journey - Day 47

I know it's been three days since I last wrote, but since being at acute rehab, our level of involvement has increased a LOT, so when we finally finish with our day, we're pretty wiped out. Now that we are on this leg of the journey, there are new challenges and triumphs every day. Everything has a different tone here. They are not only working with Sam, but with us as well. They're preparing us all to come home. In all honesty, most of us feel woefully ill-prepared for that step right now. It's hard to think about the possibility of bringing him home with a trach, a feeding tube and a wheelchair. It's hard to think about what modifications we will need to make to the house to make it handicap accessible. That is one of the biggest challenges of being in the new place--knowing that our boy will not be as far along as we had hoped by the time of his homecoming. We knew it was a very likely scenario. Now it is becoming reality, and it is hard. In no way does that mean that we have abandoned hope for a full or almost full recovery. It's just a little hard to wrap our heads--and hearts--around it all. Throughout each step of this, Sam, along with the rest of us, have been in the absolute best place possible for his recovery, and we know that will continue to be the case as we move forward. I realize that's not the most uplifting opening paragraph, but it's where we are. Keep reading, though. It does get better.

Sam has had a very good first week with rehab. The biggest goal of this week was to see how well he could tolerate the therapies they tried with him. He did not disappoint! He has been visited primarily by Physical Therapy (PT), Occupational Therapy (OT), and Speech (which includes a lot more than just speaking.) Everyone we talk to says that while all of the therapists there are fantastic, the ones working with Sam are the best of the best. Here is some of what went on:

PT: This week we started with some stretches, along with getting as close to a vertical standing position as possible on the tilt table, while his blood pressure and heart rate allowed. Yesterday, he made it to 70 degrees. The therapist was so happy with that, today he decided it was time to try sitting up on the edge of the bed. The goal with that was to see how much Sam contributed to the process, and if his vitals cooperated. He did very well, starting to tense his abdomen to try to find balance.  At one point, he tried to shove himself back over to a lying position because he'd had enough. The therapist was very positive about the direction Sam is headed and said something along the lines that he was impressed with what he was seeing. I mentioned this to the nurse later, and she said that he does not hand out praise lightly. We are very encouraged by this.

OT: Because he is hardly moving his left side at all, in an effort to not lose mobility in his left hand, he now has a splint. This will make things easier rehab-wise once he does start engaging that side of the body. The boot he'd been wearing on both feet (alternately) has also been relegated to just the left foot. The right limbs are moving enough that he is not in danger of losing flexibility and range on that side. The therapist also showed me how to do neck stretches today, and as he did, he said that it was already better than when they did the same thing yesterday.

Speech: We are working on using a Passy-Muir valve which means we're working on getting his voice back. In terms of the trach, he has been off the vent for quite a while now. Throughout the rest of the day he's on the trach collar, which provides him moisture, unless he's getting moved to take a shower of get on the tilt table, or something else. If he's moving he gets an HME, and all air, inhaled and exhaled, passes the route of the trach. With the speaking valve, the air goes in through the trach and is pushed past the vocal cords. While exhaling, the trach is blocked and all air leaves via the mouth and nose. While using the valve today, he did well, meaning he was breathing well without using the trach 50% of the time. The other part is that we actually heard his voice. It was not intentional, but it was clear that's what we heard. The speech pathologist was over the moon at this and told him that he made her day. 

Today was a very good day.

That pretty much sums up Sam's week. The rest of our week while not working with him involved paperwork of various types and taking care of all of the other things in life that have so rudely kept demanding attention. The bills need to be paid and the cats need to be fed, and Sarah, although she probably would be willing, would DESPISE the walk home from Senior after softball practice. She has been amazing through all of this. She has been trying to carry on her life as normal, which is pretty crazy without all of this other stuff going on. We are incredibly proud of how solid she has been. And Aaron has also been as involved as he can be at more than 800 miles away. If nothing else has come out of this situation, as a family, we could not be stronger or love each other any more, and we are grateful for that.

Today's prayer requests are rather simple--that Sam continues to move forward in rehab, that this horrible lip-biting phase stops, and that he WAKES UP. That will make all of the difference in his rehab. Every day he makes improvements, and we know he's getting closer to more consciousness. Our patience muscle is just a little tired on that front right now.  Thanks!

This picture is from the Youth Gathering trip this summer. Hopefully it warms you up if you're still recovering from all of that snow last week!

1/25 - Sam's Journey - Day 44

Today was Sam's first official day of rehab. Jim was here for all of it, and I'm taking night shift and day 2. Today, Sam got on what I think is a called a tilt table. They start him off in a lying down position, and then raise him up to pretty much standing. While we're starting, the big goal was to see if he can maintain homeostasis, which they measure at this point by heart rate. They don't want it to go lower than 90. Sam managed to do that successfully for 10 minutes, which was a great start. I thought it was pretty excellent since I sometimes get a head rush after getting up off the couch. After that, he had an ENT appointment at Children's, so back in the ambulance they went. They are talking about changing the trach to a different one than what he has, but they're looking at having it out completely shortly after him being done here, if not sooner. That's all contingent, of course, on him being able to tolerate each step along the way of less and less support, but the one thing that has been consistently going well has been the trach collar trials. He has been off the vent for quite a while now, and has only needed a little oxygen twice to recover after big coughing spells. That's really exceptional news, and we're hoping that things will continue moving forward on that.

There have, however been a couple of minor setbacks. One is that he definitely has his nights and days mixed up, which is awful for therapy. It's exhausting stuff, and if he goes into it with little to no sleep, he just doesn't get as much out of it as he could. Also, he is losing weight. For those of you who have not seen him in several years, he is not a big kid to begin with, and it's hard to watch him lose what little mass he's got. Complicating that is that over the last several days, he has been throwing up during or after coughing strenuously. Today was worse. After a super first day, he got settled into bed and promptly projectile vomited everything. (Sorry. Guess I could have given you a gross factor warning.) They've stopped his feeds for now and have put him on IV fluids and Zofran to prevent him from throwing up. They aren't exactly sure what's up, but they're checking into a couple of reasons why this might be happening. Finally, the last thing isn't a super huge health risk, but it's incredibly unnerving. He's always been a teeth grinder, but ever since the accident, he will not unclamp his jaw. Lately, he's been catching his lip in there and will not let go. He's got the relentless bite of a pit bull. It's really hard to watch, and we're trying to keep him from doing that. Hopefully, we find a solution soon.

Tomorrow, he has more rehab, and we're hoping that he has a good, productive day. Prayer requests for today include:

• A peaceful night's rest so he's energized and ready to go for tomorrow, and sleep for the rest of us as well
• A productive day of rehab tomorrow
• That he stops biting his lip and/or we can figure out a way to get him to unclench his jaws of death when that happens
• That we can figure out how to keep his food down
• That he can get this trach out sooner rather than later
• That little Aaron can overcome an allergic reaction to an antibiotic for a cerebrospinal fluid infection
• For a quick return to normal from the massive snow all those in the east just received
• Thankfulness for good test results for a friend

Thank you, dear friends! We are grateful to and for all of you!

Today, I'm posting this in consideration of all of the time lately we've been spending listening to the Billy Joel channel on Sirius XM. Also, it's been almost a year since Sam sang this at the school's dessert show which is right around the corner. I posted it on my Facebook page close to the beginning of this journey, but I was finally able to listen to it the other day myself.

***It doesn't seem to be working as I originally posted, so here's the link:  She's Always a Woman

1/23 - Sam's Journey - Day 42

This is going to be a very brief post, but I knew people would start to blow up each other's Facebook feeds in a panic that something has gone horribly awry. ;) Things are good here, but the real work of rehab hasn't begun yet. Sam has one more day of R&R before he starts rigorous activity. Until Monday, though, we're kind of laying low. We're also trying to figure out the newest in a long list of normals, so we're a little worn out. Thanks for your continued support, #TeamSam. You rock!

1/21 - Sam's Journey -Day 40

Today was a very big day for all of us. We knew that it was possible for him to be moved to rehab today, but it was contingent on a several things, all of which were outside of our control. Not to mention that if Sam had anything weird happen such as spiking a big fever or the like, today was off the table. Knowing how he likes to mess with medical professionals, when we discussed the possibility of moving today while in front of him, we spoke in code to try to sneak one past him. The goal was to get him moved in and settled by early afternoon, and we would be told by noon at the latest. We were in our normal routine of sitting up in the chair while watching Judge Judy, which ends at noon. She had just finished up the last case of the day, and so I thought, "Well, that's it. We're moving next week." At that same moment, the door opened and the rep from the rehab center leaned in, gave me a thumbs up and a big smile and said, "Within one to two hours!" And for the second time during this journey, I did a happy dance. I rushed around to pack everything up and then...we waited. I think it was a little after 2pm when transport finally got there. They loaded him up for his second ambulance trip in less than a month and headed down here. While they took a more direct route, I decided to take the scenic tour (I abhor the Woodall Rogers) and got here around 3. (Just for the record, Sam did try to thwart our plan by having a crazy high blood pressure reading after he heard he was moving. He always gets agitated in the chair, so we laid him back a little, and his bp eased up. There was no way I was letting him win that one.)

Since we have been here, things have been good. You are probably wondering where "here" is. We are now at Our Children's House. It used to be associated with Baylor, but was acquired by Children's several years ago. That's really going to facilitate his care because they already have access to all of his records.  It's also more homey. It has all of the things in a typical hospital, but on the outside it looks like a huge Victorian house. It is a little bit farther than Children's, but at least we can stop worrying about toll fees. So far, the biggest thing of note is that he has been completely vent free since he's been here. When I got in, he wasn't even on the trach collar. He'd graduated to an HME, which stands for heat and moisture exchanger. It's also called and artificial nose. Since Sam's skipping the mouth, nose and  throat for breathing, he needs to get moisture somewhere, or things can go wrong quickly. Overnight, they'll put him back on the trach collar. If he can maintain good blood gases, he might be done with the vent for good. So far, so good. Tomorrow, we will probably meet with all of the different groups that will be working with him to hear the plan.

I know that a lot of you would love to visit Sam right now. As of the moment, I think it's best if we keep it how it's been. Please text if you're planning on visiting, and it's still not a good time for peers to come down. We are confident that most of that will change soon, and that he will start to emerge at a much quicker rate than he has been. At the same time, there is a reason this is called acute rehab. They are going to be working him to the point of exhaustion--and probably beyond that. Once we have established a schedule, and we know what will be good times for him, we will let you know. Thank you for your understanding.

We thank God that we were blessed with such an incredible medical team at Childrens, and that m
we are moving forward on the path to Sam's recovery. I'd posted on Facebook that we were moving, and one of friends commented, "Where you go...We go..." Thank you for going with us!

As we move from place to place, we move our collage of Sam & fam pics. Here they are in their new home away from home.

1/20 - Sam's Journey - Day 39

There is not a lot of new and super-exciting information at this point, but I did want to fill you in on how the last couple of days have gone for Sam. He continues to baby step his way through recovery with the occasional minor setback. He spent 8 hours on Monday and 9 hours on Tuesday off the vent, and his sats are holding. We're hoping for as little vent dependence as possible as we move into the next phase of recovery. And, as is his usual mode of operation, Sam has made another machine cry. The vent that he uses is not reading his respiration rate correctly and jacks it up 20 to 40 points higher than it really is. Several people rushed into the room last night in a panic that he was in distress. My only guess is that somewhere along the line, Sam heard the term "Durable Medical Equipment" and took that as a challenge to discredit the "durable" part.

He continues to work on his endurance in the chair. Today he was there for 3 hours and did great, although he was exhausted near the end and slept for most of the rest of the day. Chair time is pretty interesting to watch. It's like the right side of his body believes that it's at a raging dance party and is in constant movement. Meanwhile the left side occasionally expresses interest in attending that party and then appears to reconsider and decides that a nap would be a more sensible idea. He has to be constantly monitored because he practically pushes himself out of the chair sometimes. He's also been lifting up his right arm a lot while in the bed, and has been reaching for his trach tubing. Usually, he lets his hand simply rest there, but today, he had a solid grip on one of them. That's certainly something to watch for as he continues to come off of the meds that have been keeping him so mellow. He also intentionally tried to pull off his pulse ox, but if he's doing that, it's not so big of a deal.

One not so positive new tidbit is that he's developed another infection in his respiratory tract. We caught it early and he's already on an antibiotic and hasn't even spiked a fever from it. 

Something big on the horizon is that, although we are waiting for insurance companies and the other powers that be to verify this, he might be going to rehab as early as Thursday. If it doesn't happen on Thursday, it will will probably be at some point in the following week. This is exciting, because we want to see him moving on to the next part of the journey. We know that he will make great strides there and are looking forward to being in a place that will make that happen. I will give you the official thumbs up when we get the word.

Specific prayer requests for today are:

• that the antibiotics knock out this lung infection, and that his progress isn't impeded
• that our move to the rehab facility happens at the right time, and that the transition is smooth for all of us
• that he continues to receive excellent and attentive care from the medical staff charged with his recovery
• for a friend waiting for medical test results, for a colleague that had family changes affecting her life plans, and for young Aaron who is battling through his own recovery from a TBI.

Thank you for your continued boundless generosity of support, offers of help, and of course, ceaseless prayer. I'm sharing a video that his choir director shared with me. It makes us all laugh, because how can you not laugh at a video of the kid practicing All State music while dancing and keeping time with a skeleton leg?

1/17 - Sam's Journey, Day 36

If you happened to catch my Facebook post this morning, I was right. Today was a really good day. Right after I typed that, Sam was pretty alert, so I thought I'd try out the communication system we've been working on. We are supposed to ask yes/no questions, and if he blinks once, it means yes, and if he blinks twice, it's a no. Our base question was, "Do you have cats?" After he blinked once for a correct answer, I thought I'd keep going. Just so you all know, Sam does not have a cat named Roger, but he does have one named Chester. He also used to have one named Poe, and his favorite nurse is Meagan. (She asked the last question.) This is incredible progress! I went to the cafeteria for some coffee and came back up to the room. While I was gone, the doctor came in, and the nurse couldn't wait to tell me about their 'conversation.' The doctor had held his hand and asked, "Would you grab my hand, Sam?" to which he replied with two blinks. She then asked, "Do you want me to go away?" One blink. He's definitely never been one to hold back his opinion!

Later in the morning, he was in the middle of a breathing treatment. They're awful but necessary to bring up all the garbage in his lungs. During the treatment, the respiratory therapist (who was very good) kept saying repeatedly, "You're doing good, Sam." One time after saying that, she turned to me and said that she could have sworn he had rolled his eyes at her. I had to stifle a laugh, because I could almost see the thought bubble over Sam's head. "Doing good, like not doing evil? It's WELL, woman, WELL!" Our boy is coming back to us.

One other development of note today was that he had several successful trach collar trials free from the vent. The last one went 3 hours, and he did fine. The doctor whom Sam had summarily dismissed earlier told me they might do a sleep study to see his breathing patterns to determine what kind of support he might need at night. Today was the kind of day we have been waiting for, and we're hoping for many more like it to come. We know there will be hard work and potential setbacks ahead, but today was a very good day. Thank you for your continued prayers and support!

I got a couple of pics from one of Sam & Sarah's fellow choir members. She pointed out that Sam apparently had the uncanny ability to photobomb her snapchat pictures. I also snuck a copy of one on the choir director's door. Since a little bit of his personality started to emerge today, I thought they were entirely appropriate. Have a great day!

     

             

1/15 - Sam's Journey - Day 34

I really don't have too much to report. Sam continues to have more mini-triumphs every day. The movement of his right arm has expanded to raising it on a regular basis and lifting up his shoulder. In fact, he nearly pushed himself out of the chair today because he was moving it so much. (This is also why he always has a spotter.) His left arm is moving a little, but it's taking a little longer to wake up. The fact that he's moving it at all is promising to us since the main injury was to the right side of the brain. His right leg has been moving as well while he is in the chair, which overall is going really well. He has tolerated being upright for the last three days, and they continue to increase the time he's seated and/or angle at which he is upright. This is promising as we move forward toward more intensive rehab.

He is still not as awake as we would like to see him, but they are working on weaning his pain medication. As those slowly come off, we are hoping to see him more alert more often. He's been "watching" some of his favorite shows. Today he dabbled with Futurama and The Tick. Who knows what tomorrow will bring? Also, we're trying to establish kind of a normal bedtime routine since we're thinking he might have his days and nights confused. After bath time or his last evening respiratory treatment, I've been reading him the first Harry Potter book in Spanish. I'm hoping it might trigger something for him, and even if it doesn't, it keeps me plugged in so that I'm not too rusty when I go back to work. (Even if "He-Who-Must-Not-Be-Named" isn't in the curriculum.)

Other than that, we continue to wait. In the meantime, we get more and more hands-on with care, and we had the chance to visit this evening with a college friend we haven't seen in a while. God is good and continues to bless us with positive signs from Sam and good people in our lives. Thank you for continuing to lift us all in prayer.

Tonight's picture is from Sam's days on the DI team at Carlisle. Good times!

Sam's Journey - Day 32

Sam has had a very busy day. Speech therapy visited in the morning, but there was only a little bit of response because he was kind of sleepy and lethargic. Maybe I should have given him that cheeseburger after all. Regardless, we did see some thumb wiggling. After that, the magical chair arrived. 

Yes, it's pink. Secure men aren't afraid to sit in pink chairs. It starts out as a bed and then transforms into a chair at varying degrees. The worst part was for the six people who had to get him onto it. There is also the fact that his head was right up to the very top of it, while his feet hung over the bottom by a good six inches. Today he was in the chair for an hour at a 45 degrees. Each day, they will change the settings. Also while he's in it in the future, they will be doing various rehab activities with him. Today he basically chilled there. I put his glasses on him and we listened to some tunes. This is a great step in a positive direction!

The other big physical thing that happened for him today was a result of the MRI. One of the things they saw was that around the surgery site especially, there was a buildup of brain fluid between the skull and brain. Before anyone panics, this is a very common occurrence. This fluid usually can dissipate on its own, and that is a common plan of treatment. However, in an effort to speed up his recovery, they decided to remove it. By the time I left the room, grabbed some water and cleaned up the resulting puddle because the cup had a microscopic hole in it, the procedure was over. The neurosurgeon said he did well and asked me to keep him posted on whether I saw any changes in what Sam was doing. I am trying not to excessively read too much between the lines of what I am told, because that is a slippery slope. However, I got the distinct impression that he was hoping that there would be improvement after the procedure. We shall see. Sam's been pretty much zonked out after the hard work he put in today. Right now, he's semi passed out facing a private showing of Monty Python and the Holy Grail which I have strapped to the bed. (There is nothing that cannot be acquired on Amazon, including straps that attach things to hospital bed rails.)

Prior to the procedure, I had a brief but incredibly meaningful conversation with the neurosurgeon regarding what he saw on the MRI. Earlier in the day we had heard from someone else in neurology that it was "pretty much what we expected." I interpreted that as there would be some brain stem damage, based on a previous conversation. Instead, here is what was discussed:

1. There is extensive damage on the right side of the brain which is where the main impact and both surgeries took place, which does not surprise us in the least. We expected that.

2. He showed me where the fluid was and where they were going to take it out.

3. I then asked him about the brain stem, since that was kind of at the top of our list of ginormous concerns. His answer was, "Well from that angle it's clear." He did not seem to share my concern, and didn't go digging up other images of it. I couldn't figure out if he wanted to get right to the procedure, or if he was really not concerned about it. As we talked further, I decided it was the latter, because

4. he pretty much reiterated everything I've been saying in the blog about the MRI and what it meant. (Well, except for the God stuff, but I'll let that slide.) At no point did he say, "He will never ..." He did however say the following:

• I have seen scans that look good and there was poor recovery, and I have seen scans that look bad and there was great recovery.

and,

• I don't like to give a prognosis based on an MRI. I prefer to use it as a point of reference on how to proceed with treatment and/or rehab. (Then pointing at Sam) It's really all up to him.

Short of hearing that the MRI was completely clear with no damage which could only have been an act of God, I really feel this is pretty much THE best news we could have possibly received. If I'm being honest, we really miss Sam, so it's a little hard to hear about the 'extensive damage' even though it was expected. We've been going non-stop for a month, school and music stuff is going full swing for most of us, and we are tired. And while our patience has grown exponentially since this all began, it occasionally wears thin at times, like now when we're just waiting for him to wake up. But, as we have through this whole journey, we will look for the next wave on the horizon to lift us back up and carry us on. Thanks for being that constantly stirring current of prayer and support beneath us that enables us to be the best we can for Sam. You sustain us.

This is a picture from this summer's mission trip, I believe while working in Chicago. If you have any pictures of Sam that you want me to include, send them to me! Thanks!

Sam's Journey - Day 31

After a long day of waiting, Sam finally got his MRI. He was gone for about an hour, half of which was used disconnecting and reconnecting him to all of his gadgets. The techs who took him down said he didn't cough much during the MRI, which was good. The fact that he has a cough is an overall positive thing. It means his body is trying to move out the lung junk he accumulates due to being on a vent and being largely stationary in the bed. The only time he gets to move is when they turn him, which is every 2 hours. 

During the day, we had visits from different people--speech therapy, PT, respiratory, and the rep from where we hope he will be headed in a week or so--acute rehab. Since we've moved to the pulmonary floor, the care has been equally superb as it was in the Trauma ICU, and the fact that there's a bathroom in his room has made life much more manageable for Jim and me. Today I also had my second trach class, where I learned how to change a trach and what to do in emergency situations. Right afterwards, I had to actually change Sam's trach. This was the picture I sent Jim after that adventure:

It was an incredibly unnerving experience, but overall, it went well. It is my hope that it gets easier each time, but it still falls at the very bottom of the list of things in which I find joy.

Big things will be happening for Sam in the near future. At some point tomorrow, he will begin working with a cardiac chair. The goal is to get him to tolerate being in a seated or semi-seated position to facilitate recovery. We will (also tomorrow perhaps?) be hearing the results of the MRI. We remain hopeful for as little damage as possible, and even if there are major issues, we are resolved to not let that be the sole factor in where his rehab will lead. We have wholly turned this story over to God and to Sam and will let them write its subsequent chapters. The medical staff and the rest of us will need to be content with being adjunct contributors and bystanders in what we believe will be something remarkable to observe. God has placed us, for reasons known only to Him, in a position to let His best work be done. We have already witnessed incredible things in this past month, and we can't wait to see what else is in store.

I need to hit the sheets, so I will leave you with this picture. In preparation for seeing our boy sitting up more, here is one from when sitting anywhere was entertaining.  God's peace!

1/12 - Early evening quick update

It looks like the MRI has been pushed back until 7. Sorry for not letting you know sooner, but we were in the middle of bath time. We were hoping that once we started that complicated process, they'd call to say they were ready for him. No dice, but at least he's clean. He still hasn't eaten today, so I'm sure he's ravenous. Somehow, I think they might frown on me putting a cheeseburger in a blender and using the G tube, so I guess we'll just wait until he's sufficiently scanned.

I'll keep you posted!

1/12 - Quick morning post

Good morning. I just wanted to let you know that Sam's not scheduled to go in for the MRI until 5:30pm. So, prayer warriors, I have a couple of prayer requests for you.

1. If you have a moment during the day, a prayer for an earlier MRI time would be appreciated. Sam will not be sedated, so he has not gotten any food since midnight. However, this is the kid that would choose the very second he gets in the MRI to snap out of this. If he decides to move, they would have to sedate him. The sooner he gets the MRI, the sooner he can get fed.

2. If he gets in at 5:30, your prayers during that time will be appreciated.

I'll keep you posted. Thanks!

Sam's Journey - Day 31

I know you've all been anxiously awaiting the results of the MRI. We're all going to have to keep on waiting, as he will not be having it today. There were just too many other urgent cases that bumped him from the docket. That's great news for him--he's not the most critical! The bad news, should you choose to view it that way, is that we all get to work out our 'patience muscle' a little bit more together. 

Other good news of the day is that Sam has been officially released from the ICU! We loved those people and the care that he received there, but we are thrilled that Sam no longer needs constant monitoring of multiple organ systems. He has been transferred to the pulmonary unit because he's still on the vent...more or less. He's no longer on the big MacDaddy hospital vent, but more of a home version. When he got to this floor, they had to fine tune the settings on it because he was taking more and more of his own breaths. If those settings are successful, they will begin trach collar trials again--meaning no vent. They are going to work up very slowly. The pulmonary attending doc said she prefers to view this as a marathon and has mapped out a training plan for Sam. We're excited to see how he does here. Knowing how well he did last time, we're pretty optimistic about how things will go.

In other news, he is responding more regularly to the command to move his thumb. The progress is slow but steady, and although we would love it if he popped up in the bed and said, "Ta-da!" we know it's all in his time. Since birth, that's how it's been with this one, so we'll just hunker down and wait for him to decide when it's time. (More patience muscle activity.)

And as for the MRI, we are content to have one more day without potential bad news. We fully anticipate some, if not widespread damage. We know that it does not necessarily dictate what he will or will not be able to do for the rest of his life, but we also want to have a realistic idea of what we might looking at. It's just important to us that we keep in mind that the 'might be' does not equate to 'will be.' In the meantime, we will enjoy the new digs (there's a BATHROOM in here!) and continue to watch for new signs of progress in our boy. 

It looks like Sam will have the MRI tomorrow morning around 8am, although we probably won't get the final verdict until Wednesday. We'll let you know where we are every step of the way. Your prayers for continued signs of improvement and healing, and as positive of an MRI as possible are appreciated. Thank you!

I thought this picture was a good reminder that Sam and God are driving this whole thing. This was taken in 2009 (I think?) while we were on vacation at Uncle Jerry and Aunt Joy's in Kentucky.

Sam's Journey - Day 29

Sam has had several days of relative quiet. We've been doing a lot of different things, and with little news to report, the blog was quiet as well. The general rule of thumb with the blog is No News is Good News, or in other terms, No News means No Bad News. I'm sure it breaks some unwritten protocol somewhere for effective blogging, but that's me, ever the rebel. In reality, we've been pretty busy. On Thursday, Jim and Aaron drove back to college in Boulder, and Jim flew home on Friday morning. About an hour after he got to the hospital, Aaron called saying the wipers had gone out, because there's really just not enough going on right now. (They are fixed now.) Today, I drove to see Sarah's softball tournament in Round Rock (3 hours each way) since she's kind of getting the short end of the stick lately. She was really surprised to see me. They won one and lost one, and it was painfully cold and windy out there. (With the wind, Feels Like temp was around 35 degrees.) I think they were just glad when it was over and could get inside a warm place. She's really starting to find her groove, and had a couple of RBI's and a nice catch in center field after which she almost picked the runner off second. I'm glad I was able to go, and it was very nice to be able to visit with people and be a somewhat normal mom. 

I know what you are most interested in is hearing about Sam's progress, so I won't make you wait any longer. Considering the situation in which he finds himself, he is doing great. His levels all seem to be trending in the right direction, and his kidneys are handling everything well all on their own. Today, they removed his NJ tube, which means the G tube is also working well. The little bit of swelling after the surgery to replace the bone flap continues to go down. He is really starting to look like himself. On the not so positive side, something he does that is simply jarring to hear is when he grinds his teeth. He was a grinder before all of this, and it was equally cringeworthy then. I'll take teeth grinding over kidney failure and a TBI any day, though.

The big, fun news of the day is that he was responding to the request to move his right thumb! Prior to that, Jim and I were having a rough time because it was All State audition day. We are sincerely happy for those that made it, but Sam put his heart and soul into that, and we know he would have done well. It all just seems so grossly unfair. But after he moved his thumb on command, that all went away. We really feel like there is something bigger than All State waiting for this child, and the thumb is just another baby step in the right direction. In addition to that, his expression seems, to us at least, to be more interactive. His eyes appeared to just be more reactive to conversation and have more emotion behind them. It's hard to explain what I was seeing, but in my heart of hearts, I really feel like he will be coming out of his current state soon, which leads me to an update on someone else.

I got an email from Donna saying that one month to the day from his accident, Kyle completely woke up and was moved to rehab the next day. Despite the exhausting work of recovery, he continues to improve. This is incredible news, and it gives us hope that one day soon, that will happen for Sam, too. Also, I just checked on young Aaron's page, and it appears that he is doing ok in the same way that Sam is. Good stuff!

Thank you for your continued prayers. The MRI is still scheduled for Monday, and we believe he will be moved to "the floor" around that time as well. (I'm thinking it is just the regular trauma floor.) This means he no longer requires trauma ICU services. Woot! Your continued prayers for improvement, good MRI results and that Sam "wakes up" soon are appreciated. Thank you, #teamsam!

Photo swap! Thanks, Sharon, for finding one with thumbs up! This is from their mission trip in Chicago/National Youth Gathering in Detroit this past summer.

1/8 - Sam's Journey, Day 27

In fairness, I did start writing this on the 7th, but it is now the 8th. I've had to check the calendar several times, because it's hard to believe that today is day 27. It seems like forever since that Christmas night when we arrived here. Our time at Plano feels like a million years ago. This has been the absolute worst crisis we have ever had to weather as a family. It has been exhausting and has taken us to the darkest of places. Since the 12th of December, the following have happened:

• A policeman at my front door telling me about the accident
• Craniotomy, after which we hear he might not make it through the night
• Clavicle, C-4 (neck) vertebra, nose and occipital fractures
• Pneumonia
• A struggle to maintain a normal temperature
• A struggle to keep ICP's under 20
• A pentobarbital induced coma
• A blood clot scare
• A brain stem death scare
• A tracheostomy, 2 feeding tubes, picc line and art line placements
• Near complete kidney failure
• An emergency move to a different hospital
• Lasix, CVVH and hemodialysis, with CVVH complications
• The compromise of liver, lung, and pancreas function
• Multiple infections
• Cranioplasty and removal of infarcted brain tissue

These have all been horrible to watch and know that my child is enduring the most horrific torture of his life. At the same time, we have been blessed immeasurably by so many people, in so many different ways. Since the 12th of December, the following have happened:

• 142,435 pageviews of this blog by people in 13 countries
• Countless texts, Facebook posts and voicemails expressing offers of support, help and prayers
• A GoFundMe Account set up on our behalf that raised $17,606 in 25 days
• the parent of one of Sam's classmates being at the accident and acting as a first responder, and later on playing an important role in his recovery
• random baskets of food, blankets, socks, sweatpants and other things to help us care for ourselves
• endless piles of get well cards and messages from friends, acquaintances, and classmates
• a basket of gift cards to restaurants from my colleagues
• A prayer blanket from the church of one of Sam's teachers with each knot representing a prayer offered for him
• good friends who talked (chatted?) me through some very difficult times 
• meals, puzzles and visits from friends and coworkers
• many visits from our pastor, and several from pastors of other churches
• a fully cooked turkey for our family to enjoy 
• random housecleaning and a home cooked meal from Nana
• a search and rescue operation for a softball bag, and the procuring of a maroon under armour shirt 
• offers to help transport and house Sarah for the softball tournament this weekend
• a recording and a picture of crazy fruit from Sam's choir buddies and choir director
• a recording for Sam from our school's orchestra
• teachers and principals reaching out to Sarah to help her make a smooth transition back into school this week
• connecting with families of others on their own journey, and being able to celebrate and grieve with and for them
• reconnecting with people from just about every place we have lived or worked
• running into neighbors, students and their parents, and a pizza guy we've never met, expressing their well wishes and continued prayers.
• an email to Sam from John Rutter
• Sam opening his eyes on Christmas day
• a phenomenal medical staff who have worked tirelessly to give this boy the best possible treatment and help prepare him for what lies ahead

I could go on and on, and then on some more. I know I am missing many of you. For that I apologize. Please know that we are deeply humbled, overwhelmed and grateful for every single one of those actions.  It is undeniably clear that the second list far outweighs the first. This has changed us all radically, and we will never be the same as we used to be. I think something from a previous post that came from one of Jim's friends bears repeating: While this may not be a path you would ever choose, once you are on it, the view can be surprising.

Thank you all for your continued support. We'd ask that you would continue to pray for Sam, that he continues to have successful trach trials, that the MRI on Monday comes back as positive as possible, and that Sam continues to improve in all areas as we move closer to the rehab phase. Thank you, #teamsam. You are a blessing to us. If you ever question that, please refer to the list. 

1/6 Momma's Tired

Today has been another decent day with more baby steps for Sam.  I'm wiped out, but I did want to give you some brief highlights. I'll address your blog addiction issues in a future entry. 

We had a care conference today. That's when doctors and reps from every aspect of Sam's care get together and tell us where he is and what his prognosis might be. While the prediction end of things might be hard to pin down right now, the short story is that Jim and I felt very good about what was said. To be clear, there are some very significant challenges that Sam will be facing through the recovery phase. We are still waiting to see if there is any damage in other areas of his brain. Even if future scans (an MRI is tentatively scheduled for Monday) show devastating injury elsewhere, there will be a plan in place for him to go through rehab in whatever form that takes. We know Sam will be different, and at the same time, we are confident that we will see incredible things from him. And after all is said and done, this is our boy, and we won't love him any differently than we did before this happened. The only thing that will change is the way we show it.

The other piece of news I wanted to share is that he was off the vent for an hour today and did very well! I think that tidbit is good enough to stand on its own!

We remain grateful for your continued prayers! God is good!

1/5 - On the twelfth day of Christmas my true love gave to me...

...actually, we're starting to lose some accessories, which is a good thing. Without going into excessive detail, several invasive things have been or will be removed shortly. I sat in on rounds today, and there was lots of good news about multiple systems. His creatinine was up a little, but not terribly high, considering it had been 36 hours since he'd last clotted up the CVVH machine. They are currently seeing whether or not his kidneys can resolve things on their own. If they start to struggle, they will try Lasix or hemodialysis to give him a little help. Right now, his kidneys are enjoying their first solo flight in a while. His pancreas numbers continue to improve. They are still giving him feedings via NJ tube to give it more time to recover. They plan on starting feedings through his G tube (feeding tube in the abdomen) on the 10th to give it more time. They also talked about a plan to see how much support he needs with the ventilator. So far, Sam is tolerating those changes well.  

Post-op changes really aren't super drastic. They've got him on a broad spectrum antibiotic to fight any infections that may arise. I can't remember what it's called exactly, but they described it as penicillin's bigger, angrier brother. I'm good with that. They are managing his pain meds as well. From what I saw, he was in more pain yesterday than he had been in the past, not so surprisingly after brain surgery. Additionally, in a few days, they may start a medication that has the potential to sort of jump start his level of consciousness.  Which leads me to the neuro stuff.

Since we have been here, we have heard from several medical people that say they really wish he'd be more responsive. We know that they took a lot of damaged tissue out yesterday, and while we don't know what functions it controlled, they still believe that some or all of that could be recovered with other parts of the brain. The bigger concern is with the brain stem and any damage that may have occurred there. The only way to see that is with an MRI, which won't work with Sam. His G tube is weighted, and so they can't do an MRI. I had a momentary, crazy vision of Sam being sucked up into the MRI by his belly like a giant car magnet at a junkyard. I'd like to not have that vision fulfill itself, and apparently, neither does anyone else here. As such, they will delay the MRI for 4-5 days until something can be done about the G tube. Until that time, there is no real prognosis on what he may have permanently lost. 

We keep getting the "he may have lost ability to walk, talk, eat," etc. The key word that remains for us is "may." We refuse to dwell in the ambiguity of "maybes" and "what ifs". And, honestly, even if an MRI shows irreversible damage, I'm not sure we'll let that write the rest of the story. God is working for good in this boy and will continue to do so. I know this will make very little sense to anyone with medical training, and I'm at peace with that. Since this has happened, we have heard countless stories of miraculous recoveries from TBIs. If anyone can pull this thing out with a flourish, it's the Sam/God team. And how can you not love that combo?

On a completely unrelated note: if you are planning on visiting, could you please message Jim or me prior to coming? There are some days/times that are better than others, and even that could change in the span of minutes. If we say no, please do not be offended. And because I'm talking about it, we are really trying to keep all visitors to a minimum, and it is especially not a good time for Sam's friends to come yet. We know you're chomping at the bit to see him, and we love you for that. It's still not time. I promise that we'll let you know as soon as that changes. Thanks for respecting that.

Please continue to pray for Sam's recovery, that his numbers continue to trend in the right direction, and that he begins to respond to stimuli. And please add a coworker of mine to the list because of a death in her family. Many thanks.

This is from many many years ago at a big family vacation at Deep Creek Lake in Maryland. I have no reason for picking it, other than it's super cute, and I'm going to need to upload some new pictures, soon!

  

1/4 - On the eleventh day of Christmas my true love gave to me...

...a complete skull. 

Well, the wait is finally over, and Sam is back in the room. Prior to his arrival, the neurosurgeon visited with us and told us how surgery went. They put in the drain which was successful in removing fluid. However, there was so much swelling past the opening in the cranium, it took a lot longer to remove the damaged tissue than originally anticipated. After they removed what they needed to, they replaced the portion of skull that was removed in the original surgery. He said that they will be keeping a close eye on everything via scans to see how Sam is progressing after the surgery. He alleviated one of my biggest fears, which was that his other organs would decide they'd had enough, and just give up doing their job. The surgeon said, he was "rock stable" the whole time. While the surgery went much longer than we anticipated, it went as well as it could have possibly gone. 

There is only one other thing I'll tell you about for now, because it is just that good. When they brought him back, they were bagging his trach instead of hooking him up to the ventilator. While they were working on setting up the machine in his room, the nurse in charge of the bag was not squeezing it enough in my opinion.  (This opinion was based on all of my vast medical training and watching ER for so many years.) She told me that she didn't need to squeeze it because he was...wait for it...breathing on his own. The breaths were not very deep, but they were good enough to not require support. Even though this was a temporary situation (they will keep him on the ventilator during recovery) this is an incredibly good sign, and we look forward to seeing this trend improve as he recuperates from surgery.

I have been receiving messages all day long from so many people that you have been praying for Sam, his medical team, and all of us. We are thankful for that, and for all of you. I know you all waited a long time for an update, and I'm also thankful for your patience! God has brought Sam through another critical juncture, and we cannot help but feel completely enveloped in his love. You are all the embodiment of that love, and we are grateful.

Today's picture is from this past fall. Jim and Sam would take the DART (train) every Monday for practice with the Children's Chorus of Greater Dallas. As a rule, Jim hates selfies, but this one completely melts my heart. 

1/4 - Quick update to tide you over

I wanted to give you a quick update about the surgery. Sam was taken there this morning at 7:35, and Jim waited at the hospital while I took care of some work at school. He has been texting me throughout the day. The surgery may have started late, but it is also taking longer than expected. We do not have a reason for that right now. Jim got a call around 2:30 saying that he would be back in the room within the hour. During Jim's wait, they also moved us to a different room. As soon as Sam is back and we have had an opportunity to speak with the surgeon, we will let you know what is happening.

Thank you for your patience and for keeping everyone in prayer!

1/3 - On the tenth day of Christmas my true love gave to me...

...(mostly) continuous dialysis (CVVH) and more baby steps.

Sam keeps heading in the right direction a little bit at a time. The CVVH has been running pretty well. With the heparin, the machine is running for just about 24 hours before they need to replace the filter. That's a big improvement, although longer would be better. They're not going to have time to really figure that out because surgery is happening tomorrow, unless something new happens to prevent it. From what I've heard, the bone flap is officially Sam's and they are ready to proceed. The surgery is scheduled for 7:30am and will last about 2-3 hours. They'll come get him a little before that to prep him. Your prayers during and around that time are so appreciated. No one with whom I've spoken seems to be anticipating complications, but this is brain surgery on the boy that has pushed the limits of just about every intervention they've tried. It's going to be an excruciating wait for us until he's out of surgery and we know things went well.

As for everything else, he seems to be holding his own. His eyes are open more often, and he's moved all of his extremities. Last night, he squeezed my hand with his left hand. It wasn't necessarily 'purposeful' but it was the first time I'd seen that since the day this all began. Also, the nurse was cleaning his face today and he turned his face away from her pretty quickly. I took that as pretty purposeful since he positively hates that. 

I've been playing more music for him today. Last night, I played the Clark choir's performance of Sleep by Eric Whitacre, and today it was the recording of Aaron's solo in the Libera Me movement of the Fauré Requiem. After the latter, he was out like a light. Other than that, I have been alternating between John Rutter and Billy Joel. Young Mr. Loeffler certainly has a very eclectic taste in music. He loves Billy Joel almost as much as he loves John Rutter, and he probably knows the words to most of his songs better than I do. (Do I have to forfeit my New-Yorker-to-the-Core Card now?) The nurse and I were jammin' to We Didn't Start the Fire, but not surprisingly, she wasn't as down with the Rutter Gloria. She'll probably be dreaming about it by the time we leave the wing, though. I'm pretty sure Sam will be pleased with that.

Prayer requests for today--and into tomorrow...the big one of course is that the surgery goes well with no complications. We are praying that God continues to give this medical team the wisdom and skill to pull Sam through this, and that his systems can handle all that is involved with the surgery and post-op recovery. Also during this time, if you could keep us in mind as well, we're potentially going to be a hot mess, and the calmer we stay, the better. Thank you, friends for your endless support and love. 

Because I talked so much about music today, and because it is so integral to our family, today's picture is of the super musicians in our family from the All Region Concert in 2014.

1/2 - On the ninth day of Christmas my true love gave to me...

a relatively quiet day.

Most of my updates today are coming from Jim, who was here the bulk of the day, and there's not much to report. We may be reaching the end of treatment in the Trauma ICU here. All of his systems continue to improve, and he only clotted up the CVVH once today.  Jim made this yesterday, and I laughed out loud:

Once everything is stable, we will probably be moving to another part of the hospital, but I'm not sure which. Other than that, they're still working on getting Sam to be the official owner of the piece of skull that is his in the first place. They are convinced it will be available for surgery on Monday. However, Jim got the impression that it might get bumped until Sam no longer needs dialysis at all. I'm guessing that they really don't want any heparin running through him after a big surgical procedure. That would be my preference as well. Also, Jim and I will be taking classes on how to care for the trach. It's standard procedure to train all parents whose kids have them. Also, some of the docs seem a little disappointed that he's not responding more. We believe these things will surface more in time and that a lot more can happen when he gets to rehab. We refuse to live in the "What Ifs". It puts us in a dark place, and that is good for no one. And other than those few things, Sam's day was quiet. Quiet is good.

If you saw my Facebook post, today was "The Day of Sarah". We have all had the least Christmassy Christmas and break ever, so we did a lot of things together. We started by gorging ourselves at the Cheesecake Factory after which we checked out 3 stores at the mall.  After deciding there were way too many people, all of whom irritated us, we went to Ulta, procured some things, and headed off to get a pedicure. At the end while we were drying, a student of mine and her mom came in. We filled them in on all of the latest Sam info, and my student filled me in on some student escapades during my absence. Instead of going straight home, we made an obligatory stop at Starbucks. It was a very good day, and Sarah is very fun to hang out with. I'm glad we were able to grab some time together for fun and relaxation before she starts back to school next week. 

Thank you for your prayers for Sam's continued improvement, as well as for peace and comfort for a friend of ours who lost his father yesterday after battling illness, and LeAnn, and her mom as she works through her own health challenges. 

After our fun day, Sarah got a little sad when she got the mail. Sam received a postcard inviting him to a coin show, one of his obsessions in the last few years. This pic is from a couple of years ago with the quarters collection.