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