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Tag: Complex Child
‘Breath of Hope’
We are excited to announce tickets are now on sale for our first official fundraiser for Superman Sam’s Survival Kit! We wanted to give you first dibs on purchasing tickets for this inaugural event! We hope to see you there!
Loving Summer
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.
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!
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.
Sam Strong
Faith Over Fear
The Good Cry
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.
Sam Strong
Faith Over Fear
Home
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.
Sam Strong
Faith Over Fear
Today Was a Good Day
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.
Sam Strong
Faith Over Fear
Done
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.
Thank you for your continued prayers.
Sam Strong
FAITH OVER FEAR
More Hurdles
It’s been eventful. The x-rays on Sam’s hips I asked for prayer for showed no change from the x-rays he had in January. Whew. Even though the x-rays showed no change, they were really concerned about the limp he had developed after being sick. Hmmm.
When we saw his orthopedic doctor a week after his x-rays, his limp was gone so she was not concerned anymore. She was convinced he had Transient Synovitis. What the heck is that?! Apparently it’s a very common cause of hip swelling and limping in kids after a viral infection. I have four kids and this is the first I’ve heard of it.
The first line of defense is ibuprofen to help with the swelling. Of course, Sam can’t have ibuprofen. Ibuprofen is on his allergy list because of his chronic kidney disease diagnosis. In this case, his nephrologist okayed the seven day course of ibuprofen. I realized/remembered a few days in, you’re not suppose to have ibuprofen before surgery. Shoot! His procedure to see if his esophagus was strictured (narrow) was only a few days away. Oops. So many things to remember with these kind of kids! We stopped the ibuprofen until after his procedure.
His procedure went well. Unfortunately, his little esophagus was very strictured. I was told I must feel validated. I’m not so sure those were my feelings, but I am glad the procedure gave Sam relief and I wish it didn’t take a procedure to fix the issue.
The way he bounces back from sedation amazes me. I asked a nurse if this is normal and her response was a quick, definitely not. He walked out of that surgery center like nothing even happened.
He made it to school two days before things went downhill again. Per Sam’s home care nurses, he was greeted with the sweetest welcome back from his classmates, teachers, and many others. He hasn’t seen them since October. They were elated to have him back. Many of the kiddos colored Lego Superman pictures for him and wrote the kindest notes that would make anyone choke back that lump in your throat you can’t control when you feel happiness and sadness all in one.
Our Easter was nice and low key with family. The rest of the week was not so low key. We spent two nights in the hospital. Poor guy was miserable. His little esophagus was very narrow again. It’s only been a week and half since the last one! This poor kid! He had another esophageal dilation and we went home the next day with a happy boy.
There are many missing details, but it is clear Sam will need another surgery to hopefully fix the underlying problem. Something has to be done. Feeding intolerance is an issue. We had been working so hard on trying to get rid of his PICC line. We had made so much progress on his feeds. Now we are back to square one until after his surgery on 4/28. Until then, he will only be on TPN (bloodstream nutrition/food) and be out of school until he has recovered from surgery.
I loved the response I received regarding his recent events from one of Sam’s hospital nurses he had when he was a baby.
ICC Nurse
Dude definitely loves a good comeback story! The ultimate miracle.
Another. Major. Surgery. Ugh. As I said, when it comes to minor surgeries/procedures, Sam is a rock star. When it comes to major surgeries, he doesn’t have a very good track record.
This time is going to be different. This time he will not throw any curve balls. This time he will recover quickly. Thank you for believing these things with us. I can’t wait to tell you the good news a few weeks from now.
Sam Strong.
Faith Over Fear.
High Hopes, Low Expectations
When it comes to certain things in life, I think it’s okay to have high hopes and low expectations. In my opinion, high hopes with high expectations, only leads to disappointment.
I generally try live by this motto, but recently I did not.
Sam was supposed to start school today. He hasn’t been in school since October. I think I was looking forward to him starting school the most. When he came down with what we think is a stomach bug yesterday, I was selfishly pretty bummed. When I shared my feelings with Sam’s dietitian, her response was,
Not selfish in my mind. You want this for Sam and it was also going to be a break for you.
She was right. Clearly in this situation, my hopes and expectations were high. Give yourself grace.
We’re still home and hoping to keep it that way. Although, we are very done with this PICC line, it might just be the thing that keeps Sam from a hospital stay.
Before he started feeling sick, he was on track to be done with the TPN (food/nutrition through his bloodstream) by the end of April, which would mean no more PICC line. His g-tube feedings have been going really well. We are hoping this doesn’t set him too far back and also know he likes to throw curveballs in the mix sometimes.
The prayer is that this is a stomach bug and not an intolerance to his feedings. As a of now, we are confident he has a stomach bug and hopefully he’ll kick it quickly.
On another note, we were able to take a trip few weeks ago. If you remember from our last trip, we had some memories to last a lifetime. On our way home, our flight was canceled. We weren’t able to get on another flight home until the next day. From that, we were each given vouchers from the airline. Abby had a soccer tournament in Florida so we thought we would use those vouchers and try our luck at another trip.
I say trip because when you are traveling with young kids or someone with special needs, it’s a trip, not a vacation. ; ) Although it was another eventful trip, we had a fabulous time.
Here’s a very short version.
On the way there, our flight was delayed two hours, Sam peed through his sweatpants. We had to leave his wet shirt on because he was still hooked up to his PICC line. He pooped right before we boarded the plane, which held the plane up a little longer. Thankfully, we hadn’t boarded yet. He threw his suction machine (basically his lifeline) into the ocean. Red tide hit our beaches, but we had two fabulous days on the beach. Abby sprained her ankle in her second game. Our flight home was delayed an hour and then we sat on the runway for almost another hour. When we got home, we were locked out of our house.
BUT what we remember was absolutely perfect weather and a wonderful time with family and friends. We kept our hopes high and our expectations low. We had some bumps along the way, but we expected some of those and rolled with the punches.
Sam might not be the easiest guy to travel with, let alone leave the house with, but we want him to have the best quality of life and we have chosen to do what we can to give him that and not hold our other kids back despite his complexities.
Prayers Sam can kick this stomach bug quickly and go back to school where he makes people better!
Oh, and Happiest World Down Syndrome Day!
Sam Strong
Faith Over Fear
You Can Do Hard Things
Thankfully, Sam rocked Covid. He only had a low grade fever for a day or two. Pretty sure I got it too, but besides a nasty cough and stuffiness, I felt fine.
A lot has happened the last few weeks, but I’ll spare you all the details. Sam’s PICC line has been quite naughty, which has lead to a lot more work on our part.
And now, we are in the hospital again. Ugh.
A few days ago (Super Bowl Sunday), he developed a fever. Not again. We got through the night, but his night nurse said he had a rough night. His infusion nurse nurse apologized before she told us she had to advise us to take him in. Like I said before, we have to be extra cautious with a PICC line because of the risk of a blood infection. I’m so done with this PICC line.
His infusion nurse already drew the necessary blood work while we were still at home. We packed Sam up along with his blood and headed to the ED. After a very long wait, and all the necessary tests, he tested positive for another virus (Adenovirus). Seriously. I thought we might get sent home, but with his labs being a bit off, they wanted to keep him for for a negative blood culture. Then we lost the PICC line in the ED, which meant Sam would have to be poked. &$!#%. Oops, forgive my language.
It’s been a couple of rough days for him. He has been having seizures that seem to correlate when his fever spikes. Seizures aren’t new for him and aren’t a concern, but I just feel so bad for him. He has had happy moments in between being miserable. He was very proud of the cookie he frosted for me. Thank you to Child Life for this fun activity.
He’s on the surgery schedule to get a new PICC line and a dilation for tomorrow. He was scheduled to have a dilation next week so now we won’t have to come back for that. Thank you to his team for making this happen. Vascular Access (PICC line people) need to have a forty-eight hour negative blood culture before they will clear him to get a new line placed. We are all confident it’s the virus that’s causing the fevers and not sepsis.
There are a lot of missed details in this post. The last few weeks have been tougher than our norm. I appreciate the doctors that walk through this journey with us on an emotional level. Sam has a lot of doctors on his team, and many that aren’t on his team, but who know him well. The doctor on call a few weekends ago, encouraged me more than I’m guessing she’ll ever know. Our conversation ended with, “You’ve got this. You can do hard things.” One of the many things that keeps you going as a medical mama.
Prayers for today. There will be no positive blood culture. Sam will kick this virus quickly. There will be no more seizures. We can continue to manage his fevers. He will be ‘healthy’ enough for surgery tomorrow.
Sam Strong
Faith Over Fear