Things are going fantastic so far. Sam is rockin’ the Naked Neck Club. The hole (stoma) in his neck is still fairly open, which means he is still breathing out of his neck, so we are not out of the woods yet, but it has shrunk a lot. Still can’t wait for the day that bathtime is not terrifying for us. We are still doing trach cares, but they are taking WAY less time than we are accustomed to. Not suctioning him is definitely hard to get used to, but I don’t think any of us miss it. All good things!
One of the things we have noticed the most is Sam’s voice is a little louder and the things he tries to say are a bit more pronounced. He is definitely experimenting more with his voice and it’s a beautiful thing.
Next week, we will see his ENT and he will determine if Sam’s stoma (hole) in his neck needs to be stitched. At this point, it is very likely. This isn’t surprising for how long Sam had his trach.
As mentioned, Sam’s spinal MRI showed some things that need further investigation. One of the things they were looking for, but thankfully did not find, was a tethered chord. He will have a colonoscopy, endoscopy, and barium enema to further investigate. This could be some answers to questions we have had for a very long time. Only hoping and praying the answers are easily fixable.
This guy doesn’t seem to catch a break, but he sure handles it all like a champ. If only we could all look at life like he does on a daily basis.
Dyeing Easter EggsThe Easter Bunny really has to get creative when you have a kiddo who doesn’t eat anything by mouth. : ) Someone was into finding Easter eggs for the first time! I’ve got my plates! One of Sam’s home care nurses who has been with Sam since he came home from the hospital as a baby, had her 1st baby. What a special moment.
Only spending one night in a hospital feels a little weird, but man does it feel good. We got home with a naked neck early this afternoon. I cannot stop running my hands over his bare neck!!!
Sam had a fantastic night. He decided to make his already exhausted mama more tired and stayed up WAY past his bedtime, but I wasn’t surprised. His oxygen was 100% for most of the evening. It did get lower throughout the night, but nothing that concerned me or the medical staff.
Sleeping good!
Doing his nebulizer treatments is a new thing for us. He thought it was pretty funny to have the mask over his nose and mouth and not over his neck. He did such a great job. I was so proud of him!
Not suctioning his trach site is another new, but great normal. He’s doing a great job of clearing his own secretions. Sam has always had a good, strong cough, and we are thankful for that.
Sam’s MRI did show something that will need to be addressed, but it was not our focus for this hospital stay. The good news about it is that it gave answers to something that we’ve been looking for a LONG time. Prayers for Sam’s doctor’s and our discernment on this.
Prayers for our first night being at home. Sean and I are a little leery because we are not used to things going smoothly, but that doesn’t mean they can’t! We are SO ready for this new chapter!
Thank you so much for your continued support. It warms our hearts to read your messages and we feel all the love so much.
Faith Over Fear
Sam Strong
I can’t eat the doughnut, but I can lick it! Waiting for Dad to come get us! This is so weird! Naked Neck Club
The day started out as a normal day in our house getting ready for a surgery/procedure for Sam. It’s routine for us. It always feels a little different when Sean is coming. If Sean takes off work to come instead of a nurse, that means the surgery/procedure is a much bigger deal to us.
Ready to be part of the Naked Neck Club!Are we ready for this?!
Sam’s PTSD kicked in as soon as we entered the hospital doors. He continually shakes his head, waves his little pointer finger in the air and says, “Uh, uh!” As you probably guessed that means, no. He does a somewhat fake cry, grabs my legs, and burrows his head into my stomach. He lifts his head, points to his arm, grimaces, and says, “Oke.” That means poke. Poor, sweet boy knows exactly what’s coming. The only thing I can do is hug him and tell him, I’m sorry.
“Poke” No!
I have watched my son roll away to surgery over 70 times in his short life. Watching your child roll away to an operating room does not get easier the more you do it. If anything, for me, it gets harder. I miss the days that he doesn’t remember what’s about to happen.
BUT, today was going to be a good day! And so far, it has been!!!
About an hour after he rolled away, his ENT came to give us the great news that his airway looked good!!! He told us he would meet us in the PICU when Sam was done with his MRI and WE would get the honors of taking out his trach! Taking out a trach is not a big deal to us. We do trach changes every two weeks and sometimes more when it comes out accidentally or purposely. Naughty Sam. It’s the leaving it out part that is completely new. Gulp.
We waited about another hour before the MRI was done. The nurse came and got us from the surgery waiting room and we went up with Sam to the PICU.
He’s always a little groggy after a procedure, but it doesn’t take long for him to perk up. We got situated in our room and waited for his ENT.
“Are you ready?”, he asked when walked into the room. Everything feels a little blurry after that.
No trach!!!!!!
It’s been about eight hours since Sam joined the Naked Neck Club and he is doing great. If he does well overnight, we will go home tomorrow. That feels like scariest and most exciting thing.
It generally takes about two weeks for the hole to fully close. There’s a 50/50 chance it won’t close on its own. In this case, they will stitch it shut. Because Sam’s had his trach for as long as he has, it’s more likely they will have to stitch it.
This has been the weirdest experience I have ever been through. It’s so surreal. I don’t even know what my emotions are.
Please pray Sam has a good night and even more for the next couple of weeks while we live at home without a safe airway. You’ve got this buddy!
With Sam’s decannulation approaching next Friday, I am filled with emotions. As I look ahead with excitement at the future post-trach, I can’t help but also reflect on the last seven years. Looking back on our journey, I came across this blog I wrote that I wanted to re-share as encouragement to those who are adjusting to your own “new normal” or know someone else who is.
I am so grateful to all who have supported us along the way both in our personal journey and in our efforts to support others through S3Kit. We appreciate your prayers for Sam next week!
Click the button below to read the article published on the Children’s MN Mighty Blog.
I think it’s actually happening this time. Sam is scheduled to get decanulated (get his trach out permanently) on March 22nd!!!!!! We’ve been told Sam will be decanulated in the Spring many times, but they have never scheduled a date. Someone pinch me. It feels real this time.
Although Sam’s had a rough almost month now, we had a really good run and we avoided a hospitalization. This is a big deal for Sam. His doctors wanted him to be able to be successful (stay healthyish) in school for a couple of months before they gave the a-okay to be decanulated. I hate to say this out loud, but before now, Sam had never gone more than four months in his whole little life without a hospitalization. He’s seven. Do the math. We are now going on eight months! Okay, now knock on wood everyone.
I know I’ve said it before, but one of the hardest parts of having a special needs child who is also medically complex is he can’t tell us what’s wrong. It becomes a guessing game fairly quickly along with consulting with many different specialties, bloodwork, stool samples, x-rays, urinalysis’, etc. Thank you Lord for home care nursing.
He’s on day two of being back in school since before the holiday break. Hoping he can stay healthy and continue to stay in school until the big day.
We are ecstatic and terrified for Sam to get his trach out permanently. It’s sounds a bit crazy, but you get used to having a lifesaving breathing tube after seven years. In our world, it’s a safe airway. I watched Sam die four times with one of those times needing more than ten minutes of chest compressions. He is alive because of his safe airway. I think this helps in understanding our fears of having his trach (safe airway) removed permanently.
What does this mean though?! It’s literally life changing for us and Sam. It means… …Sam can swim. …we don’t have to get terrified every time Sam takes a bath or is around any kind of water. …I can drive in a car with him by myself. …he can go to school if he doesn’t have a nurse. …he won’t have home care nursing, which is exciting, scary, and sad all in one. These strangers become some of your best friends. …traveling hopefully won’t be as much work. …we don’t have to do daily trach cares.
There are so many more reasons, but you get the point.
For us, swimming is at the top of our list and I know it will be at the top of Sam’s too. Sam LOVES the water. We joke that every time we give him a bath, he tries to kill himself, quite literally. His new thing is to try to lay down in the tub. When he realizes I’m holding his arm a bit tighter, moving quickly to pull him up and away from water, and clearly anxious, he laughs and does it more. Okay, bath time is over now. I can’t imagine giving him a bath and not having one hand on his arm the entire bath time and not feeling nervous the whole time. Swimming lessons will definitely be in his future. Is there swimming in the Special Olympics?!
As always, we hold high hopes and low expectations for March 22nd. He will go under anesthesia for the umpteenth time and his ENT will check for a third time to make sure his Laryngeal Cleft is still intact, meaning the surgery he had in Cincinnati worked and there is no hole in his airway. If that’s the case, which it will be, his ENT assured me I would get to do the honors of taking out his trach. I have done this a thousand times, but have always quickly put a new one in. This time, I won’t.
We will stay one night in the Pediatric Intensive Care Unit and go home the next day if all goes well, which it will.
It’s been a bit since my last update. No news is good news, right? Here are a few things we’ve done since August.
Best thing we ever did. MN State FairTrying to get Sam to look when we’re taking a picture is a very tall order. ; ) Love getting to watch Abby play. Thanks for the pics Beth. Got to take these two girls to the Lumineers concert. Abby’s birthday present from April. Where does the time go?
Abby (Sophomore), Will (Junior)Love getting to watch Will play. Touchdown! Thanks again for the pics Beth.God made this dog just for our family.Fall fun. I think Will & Abby are having fun too. Here’s what happens when there is no nurse and mom wants a few more minutes of sleep. Clothes are off and his trach is out. At least his feeding tube is still in.Apple orchard fun! We got him to look at the camera! HalloweenRoar! We almost got him to look! BF’sTaking some tastes. Nice job Sam! Crayola ExperienceI think Hank is hugging Sam. Annual cooking making day was a success. He wouldn’t look at Santa, but as you can see he has a huge smile on his face.Happy 17th birthday Will!
Overall, Sam is doing really well. He’s been rid of the PICC line since June! His g-tube feedings are running eighteen hours a day, which is kind of a bummer, BUT way better than having a PICC line.
He’s been happy and healthy. Healthy.
Summer is usually good to Sam. He generally stays out of the hospital and virus free. We love summer. He loves summer.
Dancing with my buddy, Hank.Yep, that is a frog you see. I don’t eat, but I love tasting ice cream!
We have had two doctors tell us, in order for Sam to get his trach (breathing tube) out, he needs to be successful in school for a couple of months. For them, that means stay out of the hospital and off all the hard core treatments when he does get sick. You’ve got this buddy!
I don’t like getting poked so much.
He recently had his lab appointment for his new specialty, endocrinology. The poor kid has so much PTSD. He knows as soon as we go through the double doors something bad is going to happen. He did great though. After the poke, he was fine. They drew labs every 15 minutes for an hour. Results will take a couple weeks. As always, we will patiently wait and hope for whatever is best for Sam.
For now, we will continue to enjoy what we have left of this good, busy, beautiful summer. And pray he can start school and stay in school.
We all need a good cry once in a while. It’s medicine for the soul.
I wish I could tell you no news is good news and things have gone fabulous since Sam’s surgery.
I want to tell you Sam doesn’t have a PICC line anymore and his g-tube (feeding tube) feeds have gone flawlessly.
As you’ve already probably guessed neither are the case.
In the past six weeks, this poor kid has put under anesthesia three times, one being an esophageal dilation, and two other times because his PICC line got misplaced so he needed a new one. He’s fought illnesses off and on several times. He seems to get to a certain point on feeds and then can’t go any further. He’s had all the tests imaginable to try figure out what’s going on.
We were hopeful he would be able to make it to school for the last month, but he only made it a couple of days.
It has felt like the hard days outweigh the not as hard.
Last week, after a really hard morning by myself without a nurse, with a forty pound little boy who developmentally doesn’t get the concept of sitting still on continuous fluids until he could get his PICC line replaced and poop everywhere, I felt like I was hanging on by a thread. Since Sam’s had this PICC line, we’ve had to cut his shirt off more than once because of poop everywhere. In the moment, getting scissors was not even an option.
You know when everything compiles and you feel so overwhelmed, you feel almost frozen? I slightly panicked not knowing what to do. I stopped and said out loud, “Lord, I don’t even know where to start right now or what to do. Please walk me through this. Please keep his line free from any poop or infection!” I’m not really even sure how I did it, but I did. Thank you, Lord.
After I finally got things mostly cleaned up, I got Sam on his iPad and just sat on the couch next to him feeling overwhelmed and exhausted not just from that morning, but from all the things. Shortly after, my friend and her daughter walked in the door. As my friend walked up the stairs, just seeing her, I completely lost it, blubbering like a little baby.
We hadn’t talked in the past week, so she had no idea about all the tests, Sam getting really sick AGAIN and needing another PICC line AGAIN. “On no, what is going on?!”, she exclaimed. She sat down next to me, hugged me, and let me cry. I composed myself and gave her the latest updates. She knew all I really needed was a good cry. I felt much better after.
Currently, Sam is doing great. We are back to square one on feeds through his g-tube, but so far so good. He has added a new specialist to his already lengthy list. We are thankful for entire week of no surprises.
I have had a few people, okay several, call us crazy since we recently added a new family member to our household. Meet Hank. I’m forty-three years old and have never had a dog before, let alone a puppy. I’ve been told puppies are a lot of work. I don’t know if I have a skewed perspective because of Sam, we got a good one, or both, but Hank has not been all that much extra work and has been the best addition to our family.
Here’s to the good cry and replenishing the soul. We all need it sometimes. As long as we are able to pick ourselves up and keep moving forward, the good cry, once in a while will only make us stronger.
It took two attempts to clear Sam’s PICC line, but they were able to do it. Thank you Lord.
We were able to come home today as planned! I packed for a week and mentally prepared for longer. It feels so good to be home. Fortunately and unfortunately we were able to leave sooner because Sam is on TPN and has his PICC line.
We will give his tummy time to heal and then the real test begins. When we get the okay, we will start feeds very slowly through his g-tube (feeding tube). He is going to tolerate feeds and the PICC line will be a thing of the past.
Day one post-op was not great, but anyone who has a major surgery would not be great on the first day. He had a really rough first night. Sleep was at a bare minimum for both of us. He needed a lot of suctioning (his trach) and had a lot of retching (throwing up).
Day two was rough with some good sleep periods, but he was miserable when he was awake. Overall, he slept good that night. Progress.
Day three he showed a glimpse of hope in the morning. He melted some hearts with a few smiles. He went downhill fast later in the morning. At first, it looked like a curve ball, but then as I payed more attention to his symptoms, a light bulb went off. Intussusception. Ugh. Poor guy. I prayed the intussusception would resolve on its own so we wouldn’t have a real curveball.
We tried so hard to stay away from the morphine, but by late afternoon I caved per his nurse’s gentle nudge of encouragement that’s it’s probably a good idea. It was a good idea. It definitely helped. Intussusception comes and goes in waves and is apparently very painful. Your small intestines are not suppose to telescope in and out of each other. The only thing to do is wait and hope it resolves on its own. With a few more doses of morphine that day and throughout the night, he slept really well. It was looking like Sam would hit this curveball out of the park.
Day four, he woke up happy and sat up for the first time! He was playful in bed the whole morning and had fun with music therapy. Music therapy. It gets my heart every time. She started singing the “Hello” song and the tears dripped down my face like a faucet. I couldn’t control them if I tried. It’s the same song I’ve heard the last six years from several different music therapists. Moments of Sam’s little life flash through my mind like a trailer for a movie. I feel every emotion possible in a matter of seconds so deep in my soul, I can’t control the lump in my throat and the tears that follow. After it’s over, they are good tears, the ones that have to happen once in a while to keep me going. I’m thankful for a God who meets me right where I am at.
In the afternoon Sam got a break from all his cords. I decided to try get him out of bed. He didn’t want to. He sat on my legs as I knelt down to the floor, but once I stood up with him and held his hand, he had an ear to ear smile and walked to the door. He played in the hospital playroom for about an hour before he tuckered out. My heart was full and I know his was too. He fell asleep early tonight. Overall, it was a great day.
Here comes the curveball. Sigh. It’s 9:30pm and the nurse is about to start his TPN. I take an overdue shower while there is someone in the room with him. I step out of the bathroom and a few moments later I hear, “It won’t flush.” Crud. A PICC line that won’t flush is not a great thing to hear. Now we hope we can clear the line that is likely blocked by a formed blood clot. The good thing is that it’s highly unlikely we won’t be able to clear the line.
So, prayers the PICC line will clear and flush easily.
I believe it will and I’m also very hopeful Sam will sleep good tonight and we will get to go home tomorrow.
Holding our breath. Surgery is done and it went really well. It took a little over three hours. Exhaling. His surgeon crossed both fingers in the air and smiled as he walked out of the room to let us know things went well. His surgeon has been with Sam since he was a baby. Sam has a very special place in his heart.
Sam came out of recovery very sleepy and when he has been awake, is in a lot of pain, but overall, doing really well.
Now holding our breath again. Here’s the part I have to speak away my fears. Here the part where Sam likes to throw curve balls.
Just breathe. He is not going to have any complications. He is going to sleep well tonight. We are going to keep his pain controlled. He is going to recover quickly.
