Procedure Today
Sam will have an endoscopy and bronchoscopy this afternoon. This procedure was planned to be outpatient at another location before Sam was hospitalized. The only fact we know right now, is that his ENT (ear, nose, and throat) will be there to do the bronchoscopy. We don’t know yet if another pediatric GI (tummy) doctor will do the endoscopy or his GI doctor. I’m hoping and praying his GI doctor will be able to be in on the procedure and his surgeon, as this was the original plan. There isn’t a GI doctor we don’t know here, and I’m confident in all of their abilities, and there’s comfort in having the one who knows him best in the OR (operating room) with him.
Sam is doing really well and I’m trying to keep him as occupied as possible. We are very thankful for Child Life services. He has way too much iPad time when we are here, but I have to let that go and am very thankful for it. We just might have to do some iPad weaning when we get home.
I had my second PICC line training and am feeling much better about that. When the trainer told me the pump and his TPN (nutrition) will all go into a backpack Sam will wear, she…made…my…year. I was envisioning we would have to follow Sam around the house with an IV pole. Imagine my concern with that and the combination of the Energizer Bunny and the Tasmanian devil. We don’t get that luxury while we’re in the hospital, but boy am I thankful for it when we go home!
It sounds like they are working on getting his TPN down to twelve hours a day. Once he’s stable on the twelve hours for a couple of days, we can break out of jail! I’m hoping and praying this will be before Thanksgiving. High hopes, low expectations.
Prayers for a miracle that all of Sam’s doctors will be able to be at the procedure today. Prayers for wisdom and discernment for whoever is in the OR with him. Prayers we will make it out of here before Thanksgiving!
Faith Over Fear
Sam Strong
The Plan
Ready for surgery!
Sam’s PICC line procedure went well, as we expected it would. He recovered great.
He’s been doing really well, but these four white walls get very boring, very fast for a curious, busy little boy. When the doctors ask what Sam is like when he’s healthy, I tell them he’s a combination of the Energizer Bunny and the Tasmanian devil. They always think that’s funny, but I’m actually not kidding. He’s not quite there yet, but we’re getting really close.
We love when Music Therapy comes and when Child Life brings new toys or other things to try keep Sam busy. We also improvise a lot, like playing in the sink for a while, coloring with crayons on the crib sheet, making a fort with the crib, ‘taping’ the walls with med tape, etc.
Music Therapy soothes the soul.
We’ll be stuck here until I’m done with the PICC line teaching and they get his TPN (nutrition) figured out. I had my first teaching today and will have another one on Sunday. We’ll be out on Monday, but have to go to St. Paul for his procedure that was scheduled a while ago. Then hopefully home Monday night!
That was the plan until it got changed again. Ugg. After that plan changed and my PICC line teaching this morning, I had a moment. Sometimes you just need a good cry. The bad news of having to stay longer and being overwhelmed with going home with a PICC line came crashing on my heart all at once.
In between the moments a friend sent me this.
AS YOU LOOK at the day before you, you see a twisted, complicated path, with branches going off in all directions. You wonder how you can possibly find your way through that maze. Then you remember the One who is with you always, holding you by your right hand. You recall My promise to guide you with My counsel, and you begin to relax. As you look again at the path ahead, you notice that a peaceful fog has settled over it, obscuring your view. You can see only a few steps in front of you, so you turn your attention more fully to Me and begin to enjoy My Presence.
The fog is a protection for you, calling you back into the present moment. Although I inhabit all of space and time, you can communicate with Me only here and now. Someday the fog will no longer be necessary, for you will have learned to keep your focus on Me and on the path just ahead of you.
Yet I am always with you; you hold me by my right hand. You guide me with your counsel, and afterward you will take me into glory. —PSALM 73:23–24
Show me your ways, O LORD, teach me your paths; guide me in your truth and teach me, for you are God my Savior, and my hope is in you all day long. —PSALM 25:4–5
Now we see but a poor reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known. —1 CORINTHIANS 13:12
Text From a Friend
The floodgates of tears came crashing after reading that. It was exactly what I needed in that exact moment. God continues to sustain me. It’s hard for me not to bring up my faith in these moments, because that is where all of my strength comes from.
The PICC line teaching felt like a lot. The nurses keep telling me if you can do a trach, you can do a PICC line. Very true. I still have another teaching and am incredibly thankful for home care nursing. I’m hoping, and guessing, I’ll feel better after another teaching. I got this!
The new plan is to go from here to the St. Paul campus for Sam’s endoscopy with his GI doctor and surgeon, then a bronchoscopy with his ENT. We have to stay a few nights in St. Paul until the pharmacy gets his TPN (nutrition) figured out for at home. Bummer. They tried to switch the procedure on Monday to Minneapolis, but couldn’t find any open OR (operating room) times.
Every time I have a minute to write, the plan changes! And now another new plan. They were able to get an OR time here so we will not have to transfer to St.Paul!!! Although we will need to be here for four to six more days for them to figure out his TPN (nutrition), not having to transfer to another hospital was the best news!!!
Prayers the plan will not change unless it involves us going home sooner. Prayers they can get his TPN figured out soon. Prayers for continued wisdom and discernment for Sam’s doctors. Prayers for healing for Sam’s gut. Continued prayers for peace, comfort, and strength for us.
Faith Over Fear
Sam Strong
It’s so good to see that smile again.
Thanks for making me better Sam!
PICC Line
Unfortunately, Sam’s feeds were unsuccessful so he will be getting a PICC line this morning for nutrition. We are going on almost two weeks without good nutrition. This is the next best step. Although we’ll be going home with the PICC, it will help us get home a lot sooner.
He had a test (small bowel follow through) a few days ago and it showed reflux into his esophagus, which shouldn’t be happening with the surgery (Esophagogastric Disconnection) he had back in 2020.
The hope is that his little belly just needs a little more rest. If that’s not the case, then he’ll need surgery. He just needs more gut rest.
Prayers for the PICC line procedure to go well. Prayers for the anesthesiologist and others in the operating room. Prayers Sam’s belly only needs more time to rest. Continued prayers for Sam’s doctors to have wisdom and discernment in the decisions they make for him. Prayers for peace and comfort for me in the hospital and my family at home, who are absolute rock stars.
Sam woke up ‘talking’ for the first time in almost two weeks. It was the medicine this mama needed!
Faith Over Fear
Sam Strong
Guessing Game
This poor kid. He continues to completely amaze me. He is the toughest little boy I have ever known.
On top of his esophagus being narrow, RSV, and tracheitis, the last three days, he’s had two infiltrated IV’s and intussusception again.
We played a guessing game for a few days with the intussusception. I had a light bulb moment on Thursday morning he was having intussusception again, but you can only catch it when it’s happening. To recap, we know Sam had intussusception in April and again when we were in Cincinnati in May. Needless to say, when we finally caught it on the ultrasound a few days later, I was bummed and felt validated at the same time. Because the intussusception is resolving on its own, there’s not much to do besides gut rest, which Sam’s been doing for the past week.
Thankfully, the first infiltrated IV healed on its own. The second was not as fortunate. His hand puffed up like a balloon to his elbow and because it didn’t heal on its own, they had to treat it. Oh no. This has only happened once in his life when he was a baby. I say ‘only’ because for how many times Sam has had an IV placed, that’s pretty good. I told the nurse, “I don’t want to be in the room when you do it.” I knew what treatment meant. Five needles poked in his little arm at the same time. I didn’t have it in me at that point to help hold him down. Thank you to the nurses who reassured me, it was more than okay for me to step out. We have barely and thankfully avoided another IV since then.
During all the guessing, the hospitalist said, “I always have at least one on the unit. The one who keeps me up at night when I go to bed and the one I think about when I wake up in the morning and that is you this time Sam.” If I had a dollar for every doctor I’ve heard say something like that…
It’s reassuring though. There’s comfort in knowing someone is losing sleep over figuring out your child.
Now we need Sam to start tolerating his feeds. He tolerated the Pedialyte great, but as soon as we introduce formula, he seems to go downhill. In order for us to break out of jail, he needs to be tolerating formula. You’ve got this buddy!
He’s had some pretty rough days, but today was overall good. Praying it’s all uphill from here. Prayers for continued wisdom and discernment for his doctors. Prayers for the intussusception to not come back. Prayers he will tolerate his feeds. Prayers for a restful night tonight.
Sam Strong
Faith Over Fear
The Procedure
Everything went well with the procedure yesterday. Sam’s esophagus was dilated (stretched) and this time, the doctor was able to pass the scope farther down. The last time, they were not able to get the scope through. Progress.
Generally, when Sam wakes up from anesthesia, he’s a champ. Not this time. Thankfully, he has been fever free and breathing on his own, but is pretty miserable and lethargic. We are hoping this is a combination of the RSV and being put under. It also doesn’t help he his culture showed he has a tracheitis on top of everything, which is not surprising for Sam.
He seems to be tolerating the Pedialyte we started yesterday. We are holding onto that!
Prayers he will tolerate his formula when we start it today. Prayers he will stop spitting and start swallowing. Prayers he will turn the corner today and we can go home!
Sam Strong!
Faith Over Fear!
Good News
Sam isn’t doing great, but he’s been off the oxygen most of the day and has no fever. As long as he behaves himself, they will do the procedure (esophageal dilation) tomorrow!
These kind of things are a balancing act when it comes to medically complex kids. It often comes down to a risk benefit analysis. And there are so many factors involved. We are incredibly blessed with the care team Sam has when we are here. It is evident they care so much about our sweet little boy, want to get him better and back home where he belongs.
The smiles are few and far between, but he did sit up a few times today and even played for a couple of minutes. We’ll take it! So far, it’s looking like everyone is wrong about the getting worse before getting better. They are going to be wrong.
Prayers for an uneventful evening for Sam. Pray he can continue to breath on his own and stay fever free. Prayers for the procedure tomorrow and all who will care for him.
Thank you for all the love and continued support for our family. We are truly blessed.
Faith Over Fear
Sam Strong
Miracles Still Happen
We went into Sam’s procedure with high hopes and low expectations. After what happened in Cincinnati, the odds of the surgery working were not in Sam’s favor. Here’s my analogy. Let’s say you get five sutures (stitches) in your airway. Within minutes of waking up after surgery, you start throwing up every fifteen minutes. The pressure from throwing up is most likely going break open all of the fresh sutures that were just placed. It makes sense that everyone had very low expectations, that few, if any sutures would stick.
When Sam’s ENT came to talk to us before the procedure, he told us he spoke with the ENT who did the surgery in Cincinnati and heard what happened. I told him, my hope and dream is that at least two sutures stuck. High hopes, low expectations. He responded, ”We’ll see.”
Feeling a little loopy from the Versed, and although more calm, still not excited for what's about to happen.
We’re getting close to seventy times I’ve had to watch my little boy get put under sedation. At this point, we have a pretty solid routine. We see all the staff who need to meet with Sam and I before surgery, they get vitals, we go over ALL his meds and records with the nurse for the umpteenth time, I make sure the right labs will be drawn so Sam doesn't have to get poked more, sign all the paperwork, make sure Sam gets Versed, keep snuggling my poor, very stressed out little boy, and then give him one last kiss before they roll him back to the OR. I take a deep breath, say a short prayer, and the nurse (or Sean, depending on who's with me) and I walk to the cafeteria to get something to eat.
We go back to the waiting room, eat, and depending the the procedure, wait. This time, I look at Sam's nurse and start praying. Let's note, I am not always good about praying before meals. "Lord, bless our food and I pray two of the sutures will stick. It would be really great if three of them stick. And if your having a really good day, please make all five of them stick." Sam's nurse responded, "Amen." We started eating our food.
I think I forgot Sam's previous procedures usually have two to three doctors doing something or a surgery that takes longer, because I had only two bites and Sam's doctor came into the room. He said, "Well...two of the sutures stuck. And actually, three of the sutures stuck. And actually, all five sutures are still in tact." Instant tears from me and Sam's nurse. I had the same feeling in my heart, mind, and soul on the day the doctors told me they were able to attach Sam's esophagus. Pure shock. An absolute true miracle. Thank you Jesus. Sam's ENT had already called the ENT in Cincinnati to let him know, and his response was, "Wow." Enough said.
He has no idea the greatest news we just got!!!!!
Sam always has to throw a curve ball somehow. We were cleared to leave at about 12:30pm. This would have been record timing for a procedure with Sam. We started packing things up and the nurse came into the room. "Sorry, I can't let you leave, his potassium is 8.3." What does that mean?! Apparently, that is heart attack level. If I'm being honest, I had zero worry. Sam. They checked it again right away. It did go down to 7.4, but that is still very high. Lab came to draw blood from his other arm. Even after being put under, it still took three of us to hold him still. Poor buddy. The nurse laughed at me when I put the call light on to show her the new results on my phone. "4.1", I told her, "We can leave, right!?" "Yes, let's get you guys out of here!", she said.
We have been waiting for this since Sam was two months old. He had the surgery done twice here and it failed, likely because of his retching.
We really needed a big win. Thank you Lord.
Now what?
This is the first MAJOR step in being able to remove Sam's trach (breathing tube). LIFE CHANGING. Sam still has A LOT to overcome, but this surgery is a HUGE win. He will have a swallow study and see his GI (gastroenterology), ENT, and pulmonology. And then hopefully, he can start feeding therapy!!!!!!
Thank you for your continued prayers. I truly believe they have brought Sam to where he is today.
SAM STRONG
FAITH OVER FEAR
Psalm 27:14 says, "Wait on the Lord; Be of good courage, And He shall strengthen your heart; Wait, I say, on the Lord!" I find so much peace in this. When I wait on Him, it's not a waste of time. It might be incredibly hard, but it's not a waste of time. The more I wait on Him and not me or others, the more He seems strengthen my heart.
Home Again
This time, seven days later, we were able to come home. Home sweet home. I was really surprised when the docs rounded that morning and said if things went well during the day, we could go home that evening. Generally, when Sam is inpatient, they make him be successful on formula for at least a day or two before we can go home. He was only on a mixture of half Pedialyte, half formula at this point. They were planning to start full formula later that morning. What?! Do I feel comfortable going home?! Absolutely! Isn’t this why we have home care nursing?!?! Before I knew going home was even on the table, I talked to Sam's hospital nurse at shift change that morning to let her know I was hoping to leave for a bit to go have an early dinner with my husband and celebrate our anniversary. She assured me they would have someone available to sit with Sam later. We didn't get to have dinner, but our gift of coming home was far better.
Grateful to a friend for the gift of pressed coffee and heavy cream.
Passing the time with bubbles.
Again, Sam is not back to his normal feeds, but we’ll get there. Poor kid has lost over five pounds in the last month and he doesn't have any fat to spare!
The prayer now is that the intussusception does not recur. It’s unlikely. We will focus on that. I asked the hospitalist what the threshold to bringing Sam in if he has similar symptoms again. He said, ”very, very low. Intussusception can be very scary…” I’m not sure what he said after that, I only know we better not hesitate if he shows any symptoms. It’s not going to be an issue, so it doesn’t matter.
Because of this second recent hospitalization, more than one of Sam’s docs highly recommended he stay out of school until after his surgery in Cincinnati. Bummer, but I get it. His pulmonologist was planning to have him quarantine two weeks before the surgery, so what’s two more weeks?
As we keep Sam in somewhat of bubble for the next month, pray he doesn’t catch anything. Like his gastroenterologist said, ”Let’s just get him to Cincinnati so he can finally have this surgery!” Agreed!
Thank you for your continued thoughts and prayers for Sam and our family.
Sam Strong!
Faith Over Fear!
Prayers for Today
Sam is doing great. He hasn't had a painful episode in two full days. After resting his belly and a heavy dose of steroids, we get to start a very small amount (30 mls an hour) of Pedialyte today! Please pray his intestines will tolerate the Pedialyte.
Living in the hospital is not fun, but we make the best of it.
Music Therapy
Thankful for the services of Child Life.
One handed water play.
Easter is one of the only holidays Sam has not spent in the hospital. Sean was in charge of all things Easter this year and he nailed it with the meal and Easter baskets.
I’m SO happy to have all my people here.
Sure, you can hide eggs in a hospital room.
Time to eat!
I love my siblings.
Thanks Dad.
Don’t leave.
As the family was leaving yesterday, Sam started tugging on his IV to try take it off. He knows when the IV comes out, he gets to leave the hospital. Not yet buddy. I’m sorry. If that doesn’t tug at your heart strings, I don’t know what will.
Easter reminds me of hope and new life. I’m incredibly thankful for both.
Sam Strong!
Faith Over Fear!
Admitted Again
We have landed ourselves in the hospital again. Ugh. He can’t catch a break.
We spent the entire day in the emergency room on Saturday. After all the routine testing and poking, we left with no answers. Grrrr.
He seemingly got better on and off, but overall was not progressing. We spent the entire day at the clinic/hospital on Tuesday getting more pokes and more tests. His pediatrician was a bit concerned. She called me that evening. She was worried. We still didn’t have any conclusive answers.
I don’t like when doctors actually use the word “worried”. It’s not a word they throw around often. It’s going be fine.
Wednesday morning, he seemed like he was getting better. Later that morning, he took a turn for the worse again. We brought him in at around two o’clock in the afternoon, and after about nine hours of waiting in the emergency department, we finally got a room at two o’clock in the morning. So tired. Coffee can cure that.
Thankfully, we were able to get answers after more poking and testing again in the emergency room.
As we were beginning to suspect, Sam has intussusception. To put it simply, this is when the intestines slide or telescope in and out of itself. As you can imagine, this can be very painful. Poor buddy. Sometimes it can fix itself, sometimes enema treatment will fix it, and sometimes surgery fixes it. It’s going to fix itself.
Okay, to anyone reading and believes that prayer can change things, let the prayers begin!
Pray Sam’s little intestines will fix themselves, he will not need treatment or surgery, and we will have a short hospital stay. This little boy does not need to add more surgeries to his already very lengthy list and needs to be home where he belongs!
Sam Strong!
Faith Over Fear!
Home
Six days later, we are home. Sam is doing great and back to his happy self. He’s not back to his normal feeds, but we’ll get there. As always, we’re on Sam time.
He, of course, won more hearts during our short stay. The hospitalist said, even when Sam was miserable, he brought a smile to his face every day. "There’s just something about him." Yeah, he does that to people.
Mama is SO happy he is feeling better.
Sam loves music therapy.
Music therapy soothes the soul.
He was so excited to see his Will and Abby. And they clearly felt the same.
It’s so great to be able to have visitors again!
I think he's ready to go home.
Both Sam and I have developed our own PTSD on this journey. For me, when it hits, it hits hard. It's a funny thing too. Sometimes I know it's going to happen and sometimes it comes out of nowhere.
If you've ever been to the Minneapolis Children's campus, there is a skyway from the clinic side to the hospital side. Sometimes there's music playing and sometimes there isn't. The music is always the same. I've walked across this skyway hundreds of times during hospital stays, going to appointments, going to surgeries, or for volunteering.
It was fairly early in the morning. I walked down to get some coffee. I don't know if it was the time of day, or that the music playing, or both, but as I walked through, the traffic I was watching seemed to move in slow motion as the sun was coming up and their lights beamed in my eyes. A lump suddenly formed in my throat and tears started to slowly roll down my cheeks. Why am I crying?! Many of the terrifying moments of Sam's life in the hospital flashed vividly through my mind. Stupid PTSD. I didn't get any coffee because the coffee shop was closed, but I got a something better after I got back.
Every single hospital room at Children’s Minnesota has a Welcome Book both in Minneapolis and St. Paul. If I’m being honest, in all my time at this hospital, I have rarely looked in this book. Sam was watching Blue's Clues on my phone. I wanted to know what the Geek Squad hours were so I could rent him an IPad. I knew the Welcome Book would have this information. As I paged through the book, I came to a screeching halt on the resource page.
There he was!!! My sweet, little miracle baby!!! I couldn’t believe it. Now mind you, a few years ago, before Covid, with all my volunteering I had done at Children’s, I was asked if Sam would do a photo shoot for their marketing purposes. Why not. We knew when he did the photo shoot, they could use the pictures for any of their marketing purposes. We signed a waiver saying so. Since then, we’ve had people text us with pictures of Sam on different Children’s ads. But, the Welcome Book?!?! That was was a shocker for me! And it filled my mama heart at the perfect time.
Superman Sam
We Out!
We are bustin’ this joint today!!!!! Forty-five unexpected days later and we get to go home!!!! I am overwhelmed with excitement. I cannot wait to see Sam’s reaction when we walk though the door.
A friend shared this with me today. God didn’t promise a storm free life, but he promises the storms won’t destroy us. I cannot agree more.
Thank you, thank you, thank you for your support and prayers!
Sam Strong!
Faith Over Fear!
I’m ready to bust this joint!