2/28 - Sam's Journey - Day 78

I apologize for what will probably be a very short post, at least in comparison to my previous weekly messages. I have to get myself back down there and there's a lot to do before then. I didn't want to let a week go by without updating you on what has been happening. 

Sam has had another fantastic week, although this probably shocks no one who knows him. He's been rocking all of his therapies and everyone is thrilled with his progress. He continues to improve physically and is starting to pull himself up to standing. The left side is still sluggish, but it is moving more each day. With Neuropsych, he was able to correctly able to identify the month and year, so he's way ahead of me on most days. He has more breakthroughs every day, and we are so excited about each new sign of Sam emerging. He has exactly one month until his currently scheduled discharge date, so there is no telling how far he will go in that time. The sky's the limit, really, and there's no stopping him!

As for the trach...I wish I had fantastic news for you and could tell you we have a date for it to come out. Sadly, Sam's stuck in a sea of red tape which has absolutely nothing to do with the fact that getting it out is the best thing for him. It seems like since this whole thing started, he has been the unfortunate recipient of weird, glitchy foolishness. Is he a kid or an adult? Is it his brain flap or someone else's? Can we get the computers to talk to each other on the 3rd try of the sleep study? It's getting a little absurd, and we haven't even dealt with all of the billing issues yet.

It's getting really irritating, and this kid does not deserve being treated like that. The people with the most pull are now working on resolving this situation, so we are certainly hoping that by week's end, we will no longer have to see the trach ever again, except as it gets smaller in the rear view mirror as we speed away, tires screeching.

This week's prayer request (in addition to one that he continues to progress well) is that this situation is resolved quickly, and that he is decannulated by the end of the week. Thanks so much!!!

Also this week, Sam made a new friend. His name is Simon and he is just the cutest little thing! Clearly by the pic below, he and Sam get along really well.  Have a great week!

2/22 - Quick post - No, he's not decannulated yet.

Good evening. Sam had a good day, but alas, still has the trach. I'm writing, especially for you DFW people who are looking for ways to help us out. A very good friend has set up a meal train for us. This is an easy way to sign up to bring us a meal when it is convenient for you.  The link to our page is:  

Meal Train for the Loefflers 

Once there, you will need to either create a free account (not horribly intrusive from what I saw) or log in with your Facebook account. Pick a date that will work for your schedule and fill in the requested info, and you're set. All instructions are there. One note, the delivery time is set for 6pm. If that does not work, shoot me a message and we can set something else. 

Thanks so much for holding us up during this time!

2/21 - Sam's Journey - Day 71

Sam has made some really big strides this week. We're attributing this to the continued weaning of the methadone and valium. At this point, he's almost completely off of them, and the difference has been amazing. The change of feedings has helped, too, because how much progress can you make when you're yacking up everything you eat, really? His weight is up a little as well, and he's putting a little more meat on his bones. The scabs on his head have mostly gone away, but not enough for him to not pick at them incessantly. It probably shouldn't be a huge concern, but the last thing this kid needs is another health issue.

Other than that, it has been a week of much forward movement. He has been up on the treadmill with PT, and with neuropsych, he was able to show her what a comb was used for. The speech pathologist called Jim because she was super excited that he was able to point at the body points she named. We're still waiting on the voice, but it's definitely coming. This weekend during PT, he went to the gym and I got to see him stand up. I think he may have gone through a growth spurt while he's been hanging out in the bed.  

Last night, on try #3 (because nothing goes smoothly for him,) he finally got to go through the sleep study! If it went well, the trach could be out in a matter of days, or even hours. From what we know, the test went well from the tech's perspective. We're a little shocked that it did since she attached 36 leads to him. He was completely covered in wires, and we were certain that by the end of the night, he'd have them all pulled off. We are waiting to see what the 2 docs officially evaluating it will say. We are very hopeful that this is the end of the trach. The respiratory treatments are a continued cause of consternation. He had been throw up free for several days, and last night the mask was on for a matter of minutes before everything came up. For those of you wondering about the bunny and the snakes on my Facebook page, I have been called Momma Bunny, comparing me to this video: (Some people find it a little creepy, just so you're aware. Or eating.)

Just know it's a bad idea to mess with my babies. That said, from here on out, Sam will no longer be having respiratory treatments. I will break my once a week blog entry rule and let you all know when it comes out. Stay tuned!

Sam has been communicating a lot more, although it can be frustrating. He definitely has the nod down, but he's been using some other hand signals that we just don't understand. Everything he tries to express is like a maddening game of 20 questions. Today Sam gave me a couple of easy ones and a couple of hard ones. One of the easy ones was when the tech came in to check on him. She was bent over him and he started shaking his hand like it was on fire. (That's his gesture that something is urgent.) I asked him a couple of questions that got no response. Then I asked him if she was blocking the TV. She stepped back out of the way, and the hand stopped. Later on, I was eating a salad and he started shaking his hand at me. After several unsuccessful questions, he started pointing at things. Turns out, he wanted me to give him some of my salad. The boy knows what he wants and isn't afraid to let us know.

One last story before I head off to bed...he started putting up different numbers of fingers, as if he was trying to give me his locker combination or something. Eventually, I gave up trying and told him I just didn't understand. He had one more hand gesture for me. (No, not that one.) With great force and determination, he threw up the Hook 'em Horns sign. For my non-Texas people, it's the hand signal for UT Austin. Because it was so out of character for him to do that, I started cracking up. What happened next, I have not seen in months, and it was indescribable. Our boy smiled. 

We are grateful for your support! Keep those prayers coming. Specific requests are:

• that the trach comes out
• that Sam continues to make great progress with his therapies
• that as we prepare for him to come home in the next few weeks, we are able to make the right decisions so that he can continue to have the best care possible, and that we have everything he needs here at home.

In honor of the smile, here's an oldie but a goodie.

2/14 - Sam's Journey - Day 64

This has been a very good week! There's lots of good stuff going on, so I'll get right to it.

He's finally "waking up." I can't report on some big Hollywood-esque coming-out-of-a-coma scene because, well, this ain't Hollywood.  He is however, now doing the following:

• Nodding for yes, and occasionally shaking his head for no. (And by shaking his head, I mean he turns it once really fast with shifty eyes, like he thinks someone's sneaking up from behind his pillow or something. We're still counting it as a definitive "no" though.)
• Holding up 1, 2 and 3 fingers on command pretty consistently. He also pointed down a couple of times to indicate he'd had enough of being up.
• Moving his left side extremities a little more every day. 
• Using the trach cap (meaning he does all the work of breathing) during the day and has been cleared to use the HME instead of the heated collar at night. 
• Sporting a size 6 trach, the smallest they plan to go.
• Receiving breathing treatments through a mask instead of a trach, and there is pretty much no suctioning required. This week, they are planning on doing a sleep study to see how he does with the cap for 24+ hours, and after that--DECANNULATION!!! We cannot tell you how excited we are for that to happen. We know Sam is, too. He's also starting to grab at it more, so the sooner that bad boy comes out, the better.

Everyone there could not be more excited about the progress he's making. They might even extend out his discharge date farther so they can work with him longer. The commute is the bane of our existence, but the care and treatment he's receiving there are excellent, and that is exactly what we need for him to receive for the foreseeable future.

As for challenges, he continues to have some trouble keeping his food down. We are hyper-vigilant about him not getting jostled or receiving breathing treatments during or right after feeding, and it's working for the most part. Tonight the RT came in and said "I'm here to do your breathing treatment, Sam." Sam promptly threw up. She then said, "I'll skip his treatments." Jim thinks he's doing it on purpose. That works just fine for us. As for the lip-biting, that has decreased dramatically, but occasionally he still gets a hold of it. Now, though, he only gets a little piece of it, and with him being more aware, it's easier to get him to release it. One other thing I don't think I had mentioned previously were the leftovers from road rash on the back of his head. Worst bald spot ever. Initially, they looked like a sloth face, and I took a picture (just for posterity) that I will NOT be sharing here. Those were--and continue to be--some wicked persistent scabs. They've been treating them, and they're starting to go away, but I noticed this weekend that there is actually hair growing up through them. How incredibly irritating that must be! You can tell he's had enough of them because he's been picking at them. It's great that they're healing, but we'd really love for them to go away completely.

This weekend has been another hard one for us. One year ago today, we were in San Antonio watching Sam perform in the Men's All State choir. Here he is, center stage:

A few weeks prior to the accident, he had competed in the Pre-Area competition and received first chair, and he was poised and ready for the Area competition (last step before All State) on January 9th. As we all know, that did not happen. One of his classmates, however, did make the Women's Choir. As she competed in Area and went to All State, Sam never left her mind or heart, and she carried him with her every step of the way. This afternoon, Jim got a message from a friend of his who has no connection to our school. She has been following Sam's story along with all of you. Her daughter was also in Women's All State Choir, and she got to sit in on some of what was happening. She shared with him that the clinician had the girls share what music and the All State experience meant to them. Some of the young women shared their stories with the group, and said she was stopped in her tracks when suddenly, one of the stories was about Sam. In that moment, she says that in that moment, everyone's thoughts were on this boy that they did not know.  The story did not end there. The women had some down time, and frequently, this is used to explore freedoms they don't normally have. Instead, a group of them got together and talked about their relationships with God, and they prayed for Sam and his healing. I feel like any commentary I would make would not add to the powerful nature of this story. I will only say that we are very happy that Sam ended up at All State after all.  A special thanks to all of you who took him with you.

And, if you didn't have enough feels with that story, tonight's pictures are my view from this weekend. Our school has an annual Valentine's carnation fundraiser. I received these on Friday along with a message from one of Sam's friends. She sent 5 carnations for the Loefflers--so that each of us could have one. They are some of the most beautiful flowers I have ever received. 

  

  

2/7 - Sam's Journey - Day 57

No, I have not fallen off the face of the earth. I just went back to work. Teaching, if done correctly, is exhausting under the very best of circumstances. (I can almost hear the collective "Amen" from my colleagues as they read this.)  While it is that though, I love my job, and throughout all of the journey with Sam, I have really missed being in the classroom. I love my kids, and I love what I do, and it was time to go back. What I missed the most this week while returning to the real world were, in reverse order of importance were the sneakers in which I have been living, going to the bathroom at will, and Sam. Other than that, it was very good to be back. All of that being said, it is looking like I'll be doing a blog post once a week, unless something urgent arises. I didn't want anyone going into blog withdrawal or anything like that. 

Overall, it was a good week for Sam, too. He continues to impress his therapists. PT got him onto his stomach for a while. It was the most comfortable he's looked in ages. There is also talk about getting him on a treadmill. They have some contraption where he's somewhat suspended over a treadmill. The idea is that since his right leg is working to some degree (I'll talk more about that a little later) that it might encourage the left leg to take a little walk, too. His left arm and leg have been moving a very little bit. It's very much like the right side started moving. That's really promising to us and where he's headed. His right side is freakishly strong for someone who's mostly been in a bed for 2 months, and he's really started moving that leg. This weekend, he was grabbing his knee and shin, and after I left today, he was lifting his whole leg up off the bed. Not sure exactly why he did that, but we'll take it as a positive sign. 

Another big positive of the week is that he's been working a lot with the speaking valve. It's a workout in and of itself since he's really forced to do more of the work of breathing. We're also getting to hear his voice more and more. That is very assuring to us. And, it moves him one step closer to cap trials, meaning the end of the trach being his primary airway. We will most likely keep the trach for a while because they want to keep a protected airway in case anything goes wrong, but it's still exciting nonetheless.

Last night Sam and I had a really good game of ball. I would hold the ball in different places so he had to track it and told him to grab it. After he did that, I asked him to put it back in my hand, which he also did. We did that 5-10 times before he decided it was definitely his ball and refused to give it back to me. That might not seem big, but to me it was stinking huge. This is great step toward that waking up we've all been waiting for!

Even as Sam moves forward, he continues to struggle with (usually) daily throwing up and the occasional lip biting. The biting isn't as frequent as before, but it seems that as soon as the lip is just about to heal again, he has a biting session. It's still much better than it was. As for the throwing up, we're trying really hard to convince people to wait to do respiratory care or move him at all within a half hour of eating. Because after all...

People are really coming around to our point of view because they're tired of being barfed on. We would just like him to not lose any more weight. 

Friday night was the choir dessert show, where last year, Sam sang She's Always a Woman--which, naturally was the first song on the radio today as I headed home. I was doing fine with the concert until the men's choir sang For the Longest Time. I managed to hold it together, but my heart hurt a little knowing my boy wasn't up there singing with them. On a much more positive note, we did procure our five tickets to the Billy Joel concert in San Antonio this coming December. We plan on it being a family celebration, as it will be almost one year since the accident by then. And in the meantime, if Billy wants to join #TeamSam, we will certainly welcome him with open arms!

Moving forward, please keep those prayers coming! We're still waiting for the big wake up, and we'd love to see all of these little setbacks stop getting in the way of that. And even though the blog posts have been a little more sparse, we know you are still with us. Thanks for all of the messages of encouragement. They mean the world to us!

Today's picture is from almost a year ago when Sam went to his first All State Choir performance. As he continues his work with the speaking valve, we're really looking forward to hearing his voice again!

2/1 - Sam's Journey - Day 51

Good afternoon, #TeamSam! I would be posting more frequently, but as per the usual, we are in a holding pattern. There have been more really good baby steps, along with some backsliding. Here's the latest on Sam Happenings:

The Not-So-Positives

He cannot hold down his food much of the time. Apparently, this is a very common issue with TBIs, but at the same time, it's incredibly hard to watch. He's super skinny to start with, and a 16-year-old tends to have a lot more...output compared with the itty bitties in the rest of the rehab facility. Also, you would think that for a child who basically lives in T-shirts it would be easy to find replacements. However, we have to pick the stretchiest ones so we can get them on him without turning him into a human pretzel. Before anyone runs out and buys 200 stretchy T's, please know that we're doing fine with what we've got, and with some new ones I picked up the other day. (Thanks for that, friend--you know who you are!) As for the throwing up, none of the medically trained professionals are overly concerned about it, and so we will try not to dwell on it either.

His blood pressure and heart rate are a bit on the high side. When he's sleeping, he's fine, but at any other given time he's awake, moving, or being agitated (read "touched by other humans") those go up. They are still working with different meds to find the best way to control that.

He is still biting his lip. It isn't happening quite as much, but it's horrible seeing him cause himself pain. We are getting better at getting the lip out, but it's still a process. We know that in the grand scheme of things it's not the most critical issue going on, but we're hoping this stops, and soon.

And that's pretty much it for the not great stuff! On to the good stuff...

The Postives!

They are changing his trach again. I'm not sure if I wrote about this before, but some time last week, they changed him to a different kind of trach. (Previously, he had a Shiley, but now has a Bivona.) Without going into too many of the boring technical details, it was a good move since the new one, although the same technical size, is in actuality slightly smaller and more comfortable. Today, they're going to move him to an even smaller size Bivona. This is a great thing, not only for transitioning him to being decannulated eventually, but also for more effective use of the speaking valve. 

More and more, he is tracking with his eyes. We have been asking him to look at us or at things, moving them to different areas outside of where he is looking. Each day, he gets better at moving his eyes to his target. He's better at side to side than up and down, but he's getting there.

More and more, he is moving his body. The movement is still primarily on his right side, but the left side is starting to show signs of activity. What we are seeing on the left side is much like how we saw it beginning on his right, and we are very encouraged by this.

Finally, today, they will be starting him on a "wake up" drug. Because of his progress, they have decided to begin using Amantadine, which, evidently, has a lot of different uses. It's used to treat and prevent the flu, and is used in the treatment Parkinson's. It's also used to speed up the "waking up" process for patients in a coma or a vegetative state. It's somewhat odd for us to think about this process as Sam "waking up" since he definitely has sleeping/waking patterns. Sorry for the excessive use of quotation marks. Just trying to differentiate between the different types of "Waking up". (And my apologies to my friends who are sticklers about punctuation!) We're looking at more of a waking up of the brain's level of consciousness, and not just basic physiological functions. We have no idea if this will work, and if it does, how long it will take. I know what my gut is telling me, and it's been pretty accurate this far. But, rather than inviting bad juju, I'll just say that I think this is going to be a very big week, and I will leave it at that. 

Your support and love continue to amaze us. Yesterday, the blog passed the 200K mark on hits. I know the refresh button is the main culprit for that number, but we continue to draw strength from all of you. We are making and re-making plans on how to carry out the rest of life, and we are trying to maintain and reclaim some of the things that have (out of necessity) had to change during this time. School goes on for Sarah, and softball season is starting soon, Jim is deep into Solo and Ensemble accompanying, not to mention his regular job, and I will be returning to work soon. I don't want to give too many details on that plan since things could change in a heartbeat, but I know it is the right decision. I was at school very briefly waiting for Sarah to finish some choir business the other day, and I had some very meaningful and deeply touching encounters with students and co-workers. For a variety of reasons, it is time for me to return to the classroom, and I'm kind of excited about getting some of my own 'normal' back, whatever that may look like.

Thanks for your continued prayers and for all that you do to keep us going! God is good, and we have seen Him working throughout all of this--and you. We remain hopeful, knowing that He has some big things planned for Sam. 

One other note: I didn't mention that Sam loves to grab things with his right hand. In an effort to prevent him from grabbing at his trach and feeding tube, we've procured a variety of squishy things. This pic is of him squeezing the bejeebers out of Mike Wazowski from Monster's, Inc. I can almost hear Mike saying, "I don't believe it...I'm in a photo on a blog!"