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.

Dude definitely loves a good comeback story! The ultimate miracle.

ICC Nurse

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.

Hurdles

What we think was a stomach bug, hit Sam hard. He was miserable on the couch for five days. Stomach bugs do that to Sam. If it weren’t for his PICC line, he would have definitely had a hospital stay. We are thankful we were able to stay home.

As he regained strength, we were hopeful he would kick some of the symptoms still lagging. He has been mostly happy this week, but will not swallow, is continuously spitting, and retching a few times a day. All signs seem to point to a strictured esophagus. Sam has had sixty plus esophageal dilations and almost every one that wasn’t already scheduled was a phone call made by me and then a phone call from the surgery scheduler, who we are on a first name basis with, to schedule the procedure to stretch his little esophagus. I’ve been wrong. One time. And one might argue, I wasn’t completely wrong, there was a much bigger problem in that situation.

After many phone calls back and forth, we received one that gave me a sucker punch in the stomach. After Sam’s GI doctor and surgeon discussed things, they think it’s best for Sam to have the surgery that was discussed back in December. But, I thought we would only do that surgery if Sam’s feedings weren’t going well?! He had a stomach bug, not feeding intolerance! And now, we’re fairly positive he needs a dilation! Why are we jumping to the surgery!? Us, along with Sam’s home care nurses had a lot of questions.

All this being said, he has not been able to go back to school yet. Boo.

I felt icky. I don’t want him to have another major surgery. Why more pain and suffering for my sweet, innocent little boy? That afternoon, I felt scared. I felt anxious. I felt sad. I felt worried. I felt mad. I felt frustrated.

That evening, with my brain and my heart in a fog, I went through the motions. I made dinner, cleaned dinner up, started Sam’s TPN, did Sam’s nebs, gave him his evening meds, and drove to and from soccer. Most of these are things I enjoy doing. I appreciate I get these opportunities and am thankful for them. Things were weighing me down. It’s not fair he has to go through all this!

That night, I laid in bed and poured my heart to the Big Man Upstairs. I was reminded of some of His promises. He’s got this. His plans are better than mine. He is for Sam, not against him. The more I was reminded of these promises, the lighter I felt. Surprisingly, I slept very well that night.

We waited the entire day for the phone call to explain things more. I didn’t go through the motions. I wasn’t worried about the phone call that was coming. I felt peaceful. I felt calm. I felt grateful.

When the phone call did come later that afternoon, some of our questions were answered. They said Sam would be scheduled for a dilation (esophagus stretch) next week with his GI doctor and surgeon, and things that didn’t make sense, made more sense now. We are still unsure of some things, but will be able to ask more questions next week.

We were very thankful they were able to schedule the procedure for Monday morning. Prayers everything goes smoothly and more of our questions will be answered.

Without going into a lot of detail, prayers for x-rays Sam is having tomorrow morning on his hips. We feel it is something they are being overly cautious about, which isn’t a bad thing and don’t want to be wrong about our feelings.

These are only hurdles. Hurdles can be jumped over, kicked over, and tripped over, but we can still get back up a keep moving forward. And that is exactly what we will do.

Sam Strong

Faith Over Fear

Prayers Answered

There will be no positive blood culture. Check. Sam will kick this virus quickly. Check. There will be no more seizures. Check. We can continue to manage his fevers. Check. He will be ‘healthy’ enough for surgery tomorrow. Check.

Each specific prayer request was answered. Thank you! They were able to get Sam on the surgery schedule earlier in the day than planned, and we were able to discharge that night, which meant a four day stay. We'll take it!

Adenovirus. What is it you ask? I had quite a few people asking me about this. The reason you've likely never heard of it is because it's not something you'd probably go to the doctor for or bring your kids to the doctor for. It's not a typical test that would be run either. Symptoms are generally mild unless you have a weakened immune system. Sam. For Sam, testing for many viruses is helpful in ruling out a bloodstream infection. If Sam didn't have this PICC line, I'm guessing we would have avoided this hospitalization.

They put his new PICC line in his left arm. We were grateful for this. His poor skin needed a break on his right arm. Sam has always had very sensitive skin. This doesn't pair well when adhesive is needed on your skin for a long period of time. We are hopeful we have figured out his dressing change potion so that we can avoid any skin breakdown this time around. Prayers for no skin breakdown and no new allergic reactions.

I am very thankful for this PICC line and I will be happy to be done with it! His surgeon did his dilation before they placed the new PICC line. He talked again about the surgery he would do if Sam does not tolerate his feedings. Continued prayers Sam will tolerate the max amount of his nutrition through his feeding tube so we can be done with this PICC and avoid another surgery!

Sam Strong.

Feeling better.

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 nice to know we’re still welcomed.

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.

Happy Valentine’s Day!

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

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

He Made It

It was a rough weekend, but he made it. He’s been needing some oxygen support, but we still have room to go up. Nice job, my little warrior.

Now, prayers for his procedure today! Pray for the doctor involved. She knows Sam, but is not his primary GI doctor, which isn’t unusual for Sam when he is having a dilation. Pray for the anesthesiologist and the rest of the team who will care for Sam. Pray for no complications and that we’ll be able to come home today. Pray there is an easy fix and nothing else is going on. Pray for peace and continued strength for all of us.

Faith Over Fear

Sam Strong

Prayers to Stay Home

They were able to schedule Sam’s next procedure with his GI doctor, surgeon, and ENT for November 21st. Unfortunately, his little esophagus is seeming like it won’t wait that long.

After this last hospital stay, Sam’s respiratory doctor agreed it would be a good idea to keep him out of school until his next procedure. I get it. As much as I want Sam in school, I think the risks outweigh the benefits at the moment. We don’t need anything else on top of what’s going on medically.

Sam is really miserable right now, but we are home. His symptoms are indicating he needs another dilation. Hopefully, that’s all it is.

We called the weekend, on call GI doctor. Thankfully, instead of telling us to take him to the emergency room, she got him on the surgery schedule for Monday morning. I cannot tell you how happy I was about that. My heart was really dreading another hospital stay.

For whatever reason when Sam needs a dilation, he doesn’t tolerate his feeds. We are running Pedialyte at the lowest rate possible to hopefully keep him hydrated enough until Monday morning and avoid a hospital stay.

Please pray Sam will tolerate the Pedialyte and be able to stay home until Monday. Pray there is nothing else going on. This poor little boy could really catch a break.

Prayers for our stamina as we are tired. This fall has been hard. Prayers to calm our hearts as questions and concerns are hard to push aside right now.

I’m thankful to believe in a God who loves my little boy even more than I do, and that He will comfort and sustain all of us.

Faith Over Fear

Sam Strong

Home

We are home and very happy to be here. What we thought would only be one night, turned into five nights. And of course, as a few of Sam’s doctors mentioned, he threw a curve ball.

Although we know what to expect, you don’t get use to hospital stays. More importantly, Sam is feeling much better. The older Sam gets, the harder it gets to be in the hospital, and all the more excited he gets when we come home.

Yay!!!

We are now hoping he can make it two to four weeks for another esophageal dilation. His GI doctor wants Sam’s surgeon to be there, and Sam’s ENT plans to do a bronchoscopy. If you know anything about the medical world, scheduling three doctors at one time for a procedure is not an easy task. Prayers they can land on a time within the next two to three weeks. We do not want to be in the same situation we were in last week.

Thank you, thank you for all your prayers! They were definitely felt and answered.

Sam Strong

Faith Over Fear

An Answer

Sam’s esophagus was barely open (esophageal stricture). This is nothing new for Sam, but it’s been a very long time since he’s needed a dilation. This is the best fixable answer we could ask for. His GI doctor dilated him and wants to dilate again in two to four weeks. Poor buddy.

Praying now he will tolerate Pedialyte. Generally, when Sam is hospitalized, the doctors want him to be successful on his home feeding regimen before we go home. We move very slow to get there. I was able to convince the docs to let him be successful on Pedialyte and let us work on the formula at home. Anything to give us a few less days in the hospital.

Now Sam just needs to turn the corner so we can get the heck out of dodge!

Thank you for all your prayers! Continued prayers Sam will turn the corner, his blood pressure will come down, and that he will not surprise us with anything else.

Faith Over Fear

Sam Strong

Procedures

Overall, Sam’s procedures went well. When we checked in, there was gal training, the receptionist told her, ”Sam is a frequent flyer here.” He put on the charm for the gal training and she was, of course, taken, ”That smile,” she said. "He just made my day." Yeah, he does that.

The PTSD unfortunately kicked in way before we saw the purple pj’s. As soon as we walked through the second set of automatic double doors, he knew exactly where we were. Poor buddy, became instantly stressed, but made sure he brought on the charm for a few minutes to show off how, he knew without being told, to step on the scale and then pointed to the place on the wall where he would get measured. He bounced off the scale and stood under the wall chart to be measured. Many familiar faces said, ”Hi Sam!” in the process.

The purple pj’s came into play now. The stress level was pretty high at this point. So thankful for the nurse who thought of and agreed to wait for the Versed to kick in until we put on the dreaded purple pj’s. Later, the anesthesiologist said, ”Just leave him in his diaper!” That’s exactly what we did, even after the Versed kicked in.

“I know what’s about to happen to me and I don’t like it.”

Oh boy do I love and hate Versed all in one. It takes Sam’s stress away almost instantaneously, but also makes him really loopy, which can be a little creepy to watch your baby experience.

The MRI results we don’t know yet and the ENT portion went well. Sam’s ENT is a bit new to us. He was very excited to look inside Sam’s airway as he hasn’t yet seen it. He confirmed Sam has a Type II Laryngeal Cleft. Shoot, it's still there. Sam’s previous ENT is getting close to retirement and moved to Arizona to help start a new program. Although we were very sad to loose him, the transition has gone very well. His new ENT trained closely, and is on a first name basis with the Sam’s doctors in Cincinnati. Bonus.

We felt like a deer in headlights with the GI portion, but for the most part, we got it all sorted out the next day. Unfortunately, they placed a gj-tube in Sam again, which is a more complicated type of feeding tube then Sam’s had for a while. Sam did not need to be dilated and there weren’t any clear anatomical answers for his GI concerns. We will wait for the biopsy results.

“Glad that’s over.” He didn't even seem to notice how they snuck on the the purple p.j.'s during surgery.

Now let’s hold onto our seatbelts, and pray nothing holds us back from getting on that airplane next week! The planning and preparation for traveling with a kid like Sam is insane, but what a privilege. Thanks to our friend who nominated us in 2019, the MN Vikings, and the Best Christmas Ever, we’re spending Christmas on the beach!

Merry Christmas!

Wishing you and your family a very Merry Christmas!

Can’t Catch a Break!

This poor kid! We’ve landed ourselves in the hospital again. His pulmonologist said to bring him in if his symptoms didn’t get better. We brought him in on Tuesday morning. You would think by now, I would pack a “just in case” bag, but I really didn’t think we would be staying. Wrong.

On day two, after all the lab work ups, x-rays, and an ultrasound, Sam has two different tracheitis’ and rotavirus. His medical team and I were actually happy for the rotavirus diagnosis and not something more serious. It’s always nice to have an answer and not continue, what feels like, the guessing game.

He’s being treated for the tracheitis’ and they want to rest his tummy for a few days with IV fluids. He’s still miserable, but I am confident it won’t last too long. Hopefully, we can bust this joint in the next day or two. Hospital stays do not get easier the more you have.

On a side note, his dilation went well last week. He did need to be dilated, BUT his surgeon said we could start planning Cincinnati!!!

Thanks for praying for our sweet little boy and the rest of our family.

Sam Strong!

Covid and Then Some

April was not so fun in this house, but thankfully we have all recovered. Most importantly to us, Sam is okay and we kept him out of the hospital.

It started with me not feeling too great. I already tested negative for Covid earlier in the week because we knew we had been exposed. When I started feeling cruddy, I tested again. Negative. Whew.

I had several rough days. Thank you Lord for home care nursing! On a normal day with Sam, we are incredibly thankful for our home care nurses. When he gets sick, even more grateful. Add me getting sick on top of all that. Home care nurses. No words.

Sam tested negative too, but then started getting sick a few days after I was feeling cruddy. Oh shoot. He was really sick for a good six days. He was on oxygen for four days and all the home therapies we could do that aren’t legal in most homes. We did get very close to having to bring him to the hospital, but we were able to keep him home. Again, home care nurses. Priceless.

About a week later, after I had started feeling better, I couldn’t smell or taste anything. Wait a minute!?!? I went and tested again. As I suspected...positive for Covid. What?! Those of you who have experienced these symptoms of Covid can understand how annoying it is! I’m happy to say it didn’t last too long.

Sam’s pulmonologist sent a nurse to the house to test Sam. Positive. Bummer. There was a lot of praying on my part, that he would be okay and we would be able to keep him out of the hospital.

Sean tested positive. The next day he started feeling cruddy. He was all excited to be able to get some things done around the house, but he was down for the count for almost ten days.

Will and Abby both tested negative, but had to do distance learning until their quarantine was up. Have I ever mentioned how much I love distance learning? Oh yeah, cause I don’t, not even a little. Because Abby ended up testing positive, she was able to go back to school a few days before Will. I’ve stopped trying to make sense of all the Covid rules.

During all this hoopla, I found out my grandma passed away. She was ninety-five, went peacefully, and although she was dealt a hard hand of cards in life, she lived a good life. Her legacy? She loved Jesus, taught us to pray, read our Bible, and have a relationship with Jesus.

Towards the end of her life, she could barely speak. I know she recognized us when my sister and I saw her for the first time in a long time. She clearly said two of my four children’s names. It wasn’t by chance she squeezed the two names out I have fought for on my knees in prayer countless times the past four plus years. I believe it was her heart that said those two names that day.

We didn’t get to go to her funeral, but this is where technology is a blessing. Thank you to my brother-in-law who held his phone up the entire funeral service so I could “be there”.

Me, and how I remember, my sweet Grandma.

While Sam was sick, he was scheduled to have an upper endoscopy to check on his esophagus. As we suspected, surgery needed to be rescheduled.

To recap, Sam’s last dilation was in January. His surgeon told us, when Sam can go for six months without a dilation, he’ll give us the “a-okay” to go to Cincinnati.

Tomorrow, Sam will have his rescheduled procedure. It’s been almost exactly four months since Sam’s last dilation. We are hoping and praying, he will not need to be dilated.

Sam Strong.

Faith Over Fear.

Dilation #5 Update

I suppose no news is good news, right? For the most part, yes.

Sam’s dilation went very well. His esophagus was very narrow, but not as narrow as the last time he got dilated. Good news!

Again, we wait. If symptoms begin, we call surgery and they get Sam on the schedule. Generally, his symptoms consist of retching (throwing up), which start to become more frequent and violent as time goes on. Eventually, he’s not able to control his secretions, so he spits a lot too. Basically, he still creates secretions (spit), but if his esophagus is narrow enough or closed, there is no other place for the secretions to go except out his mouth. This makes for a very nauseous little boy. Poor guy.

After Sam’s dilation, his surgeon discussed WHEN Sam is able to go three months without a dilation, then he’ll plan to get Sam on the schedule to look at his esophagus. If things look good and open, we wait again. When Sam can go for at least six months without a dilation then his surgeon will feel good about us planning another trip to Cincinnati to hopefully get his airway fixed.

Sam also had a granuloma cauterized or how I like to make it more visual for you, the extra skin on the hole in his throat, sizzled off by a fire pen. This went well too. Although, it was a lot to look at after. For the next week or so, we cleaned gross puss and what looked like black soot around his trach site. Yuck and again, poor guy! Thankfully, it all healed very nicely.

The day after Sam’s dilation he seemed like he was recovering well. When he woke up the next morning, things went south very quickly. He ended up with a tracheitis. He had a couple of very rough days. We were able to catch this right away and treat the nasty, airway bacterial infection. Along with our hard work and the antibiotic nebs, like magic, Sam was back to his lively self in no time. Thank you for home care nurses!

Except for the spitting. No, not another thing, little buddy. His demeanor was back to his norm, but he wouldn’t swallow his secretions. Per Surgery we should bring him in to be evaluated in the next couple of days, unless things got worse, which for Sam means going to the ED (Emergency Department). Not the dreaded ED.Besides him not swallowing his secretions, he seems totally fine. Sometimes I wish they had another place for complex kids to go in these situations.

The next day, after talking with Sam’s Pulmonologist, she too thought he should be evaluated. Bummer.

We had planned to take him in early the next morning, knowing the less busy times of the ED. Sam had different plans. Good plans! When he woke up, the spitting had stopped!!! Thank you Lord!!!

Sam has been back to his spunky self, continuing to teach us what life is all about.

Sam Strong!

Faith Over Fear!

Dilation #5

Sam will have another dilation tomorrow. Yes, he’s had WAY more than five dilations, but I started the count over after his last major surgery. We are hoping and praying he won’t need as many as the first time around.

In the four plus years, Sam’s had a trach (breathing tube) and feeding tube, he hasn’t had to have a granuloma cauterized (burned off), which is pretty good. This is basically skin starting to grow where it shouldn’t. Before the dilation, he’ll have a tracheal granuloma cauterized. Typically, this can be done in the clinic, but Sam’s ENT thought it would be better for Sam under anesthesia, also knowing he could do it alongside one of Sam’s dilations. We were very thankful for this. Sam’s nurse and I were not looking forward to having to hold him down for that procedure!!

We are also thankful, Sam will get his feeding tube changed in surgery tomorrow. As I’ve said before, this is a procedure he gets done routinely every two to three months. It now takes three, sometimes four of us to hold Sam down. As soon as he sees an x-ray table now, his little body clenches me with fear. We have to literally peel him off of me, to get him on to the table. It’s a fairly quick procedure, but I’m sweating by the time it’s over. Sam’s one tough cookie, so when he’s sobbing hysterically throughout the procedure, we know it must be painful.

We are thankful to be able to knock out three procedures in one tomorrow!

We’ll take some extra prayers tomorrow for Sam’s Surgeon, ENT, and anesthesia team. Pray for a smooth and quick recovery.

Sam Strong!

Faith Over Fear!

No News is Good News

Sam’s dilation went well. His esophagus was VERY strictured (narrow), almost shut again. The dilation was definitely needed.

As in the past, as soon as Sam gets dilated, his spitting and retching almost instantaneously stop. These are usually the tell tale signs he needs a dilation. Unfortunately, there isn’t anything else that can be done, except put him under anesthesia, and stretch his esophagus.

As of now, surgery will wait to hear from us. IF Sam gets symptoms, they will put him on the schedule as needed. With Sam’s thirty-five plus esophageal dilations, we’ve only been wrong once. There are many, but one great thing about Sam’s care team, is they trust our judgment. They listen, really listen to us. I call the surgery scheduler, who I’m on a first name basis with, and they get him on the surgery schedule ASAP.

We are going to believe Sam won’t need as many dilations as the first time, and even better, he won’t need anymore.

I’ll leave you with a moment from a day in the life of Superman Sam. You just can’t make this stuff up!

We were sitting in “school” with Sam. When Sam does distance learning, we prop his iPad on the kitchen island and he sits on one of the bar stools. I usually stand next to him. His nurse will stand or sit on the stool on the other side of him. All of the sudden, I thought I noticed something about Sam’s mouth. Does he have a missing tooth?!?! With Sam’s camera on, I didn’t want to disrupt school.

As soon as school was over, Sam’s nurse and I pried open his mouth. Yes, we had to do this. It’s the only way to be able to see inside his mouth. Yep, I saw it right the first time, a bottom, front, tooth, MIA! What?!?! Where did it go?!?! Did he swallow it?!?! Was it in his bedroom somewhere?!?!How did I not know he had a loose tooth?!?!

Mom guilt, setting in. And then, that good ole self talk. Stop it!! You have a lot more things to keep track of in the world of Sam, then a loose tooth!!! It’s not a big deal!! He’s clearly okay!!

Mom guilt. Raise your hand if you’re a mom and have had mom guilt recently. Okay, I’m feeling better already. It’s so silly. Why do we do this to ourselves? Because, we’re human.

Give yourself grace mama. To me, giving yourself grace is acknowledging the situation, doing what you can to rectify it, then moving on, and letting it go. It’s knowing, we are not perfect.

From the mama with typical children, to the mama with special needs children, to the mama of a prodigal, and everything in between, give yourself grace, because we all need it, every single day.

Sam Strong!

Faith Over Fear!

Dilation

We out!

I can’t wait to be home!

Sam was happy, but also nervous at times, when we left the hospital. He walked out with excitement, but would stop here and there, and clench my leg with with fear. I can’t imagine what was going through his head. That’s the thing about having a nonverbal child. I can read his emotions, but I also know there is so much more attached to those emotions and so much going on in that little brain of his. I would love to hear it all. Someday.

Overall, Sam has been doing well. His nights have been rough, but his days have been mostly good. Home care nurses, priceless. Both him and I are definitely happy to be home.

You couldn’t put a price tag on when Sam saw his Abby for the first time, in over six weeks. Let me remind you, Abby wanted nothing to do with having a little sister or brother five years ago. The bond they have now, is priceless.

My Abby!!

I love my Abby!

Home Sweet Home

Ahhh, home sweet home. My Elmo desk, and my spoons and forks.

Most of the time he’s happy with his spoons or forks at his favorite spot in the house, his Elmo desk. Or dancing in the living room to his toddler music.

Playing with my Abby.

Watch in’ football with my people.

Sam will have another esophageal dilation tomorrow. Unfortunately, for Sam, this is a routine procedure. We know the drill. I’m not saying the drill is easy, but we definitely have it down to a science. If you’ve ever had a child have surgery and remember the process, it’s quite the ordeal. When you’re asked to be on a committee to make the patient/family experience better, pre and post op (before and after surgery), you must be a be veteran. Yep, true story.

Pray everything goes well tomorrow. Pray for Sam’s surgeon, nursing staff, and anesthesiologist.

As always, Sam Strong and Faith Over Fear!

Happy Thanksgiving! Remember, you can always find something to be thankful for. Focus on what’s good in your life. I promise, there’s something.

Sam...

I’m going to spare you the many details of the last few days. Sam did have his dilation, and again, it was needed. Since then, there have been new reasons to keep everyone on their toes around here. I’ve had more than a few doctors and specialists tell me, they were pretty worried yesterday.

Today was a better day. Period. End of sentence.

Pray they will be able to figure out the source of the bleeding, or let’s believe it will stop all together. Pray for Sam to poop. 💩 Pray for his blood pressure. Pray for everyone who is on Sam’s care team and that they will all be able to make it to his Care Conference they are working on setting up.

Enough about that.

Right now, I am thankful for...

...Sam having a better day.

...doctors who lose sleep over my son.

...nurses who advocate for my son.

...being able to see my daughter yesterday.

...a family who continues to support us in so many different ways.

...being able to see my husband today.

...friends, who I know I can lean on.

...Physical Therapy, Occupational Therapy, and Music Therspy in the hospital.

...the Ronald McDonald House Charity.

...all of you who continue to pray for Sam and the rest of my family.

Okay, okay, I’ll stop.

Faith Over Fear!

Sam Strong!

Peace Even When...

On top of everything else going on, Sam developed a cold. Poor buddy can’t catch a break. It has been a rough few days. Who am I kidding, it’s been a rough thirty-two days. To be on the safe side, they did a nasal swab and trach culture. The only infection that showed is rhinovirus, aka, the common cold. Big deal, you might be thinking. At least that’s what I thought/think when my other kids caught/catch a cold.

For Sam, the common cold is rough. He’s miserable. We are constantly suctioning his trach (breathing tube). He retches a lot more because it’s hard for him to control all the extra secretions. He is also at a much greater risk for aspiration, pneumonia, and/or bronchitis. That’s where the hard work comes in for us. With continuous monitoring and safe suctioning, we can prevent these infections. Thankfully, he usually gets through the cold without complications, but it’s not easy.

Sam’s next dilation is scheduled for tomorrow at 2:45pm. As of now, he’s still scheduled. The doctors today, said if things get worse, he will have to get rescheduled. Pray for a quiet, restful night, for the cold to be short lived, and for him to be healthy enough for surgery.

Unfortunately, we are still suctioning blood from his trach. In the morning, ENT will do another bronchoscopy. This way, if they find anything, they can take care of it in surgery tomorrow afternoon.

On a good note, he is up to sixteen milliliters per hour with his feeds and we have not had to stop them!

Although this is hard, and trust me, I have my moments, for the most part, I am okay. Even in all this chaos, I am at peace. I truly believe, the more you lean on and trust in Him, the more you will feel an overwhelming peace even in the chaos.