Procedures Update
The excitement of breaking out of jail made me forget to update on the procedures Sam had while he was still in the hospital. Obviously, from the last post, he recovered very well.
His GI doctor dilated two different areas of his esophagus. Because Sam’s esophagus is not attached to his stomach, it’s been hard to scope the inside of his tummy. She was able to take his feeding tube out, and although it wasn’t easy, she got the scope through, and was able to take a look. Not surprisingly, his tummy looked rough. She took biopsies. We are still waiting on the results, but generally, no news is good news. Probably too much information, but she also scoped his rectum and everything looked good down under.
His ENT gave the GOOD NEWS that his laryngeal cleft is still repaired and his airway looks good. Or best news. We are on track to work on decanulation (getting his trach out) in the the Spring!!!!!
We are settling at home with a PICC line. Sam is doing great, but his poor skin is a mess. We discovered he’s allergic to the dressing. They are now doing dressing changes every two to three days, instead of weekly, and prescribed him a topical steroid.
The more frequent dressing changes are a drag because three of us have to pin him down for a good ten to fifteen minutes to keep his arm still and sterile. Sam might be a little guy, but he is very strong and flexible. I think the scariest part of a PICC is the the importance of keeping it sterile. The risk of infection is low, if you’re doing all the right things, but a bloodstream infection is serious.
Thankfully, I am much more comfortable with all things PICC line, except for the major frustration of getting air out of his TPN (nutrition) infusion before I hook him up at night. Air in the bloodstream, not good. I’m not one to use curse words very often, but they’ve been slipping out this past week more than I would like to admit. The infusion nurse told me, in time, I will get it. Hopefully by that time, he won’t need the PICC anymore!
The plan is to give his gut another week of rest and then talk to his GI doctor about possibility trying feedings again.
Continued prayers for no PICC line complications and patience for me with starting Sam’s infusions.
Home Sweet Home
Faith Over Fear
Sam Strong
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!
Nothing Definitive
His CT scan didn’t show much, but his esophagus did raised some concerns. Shocking. GI will do an endoscopy and hopefully ENT, a bronchoscopy, if they can find someone.
Praying for answers, an easy fix, healing, the anesthesiologist, the doctors, the medical staff, a smooth and quick recovery.
Faith Over Fear
Sam Strong
The things that keep a mama going while living in the hospital with her child…
The other day when we came upstairs to the unit from the ED, the first nurse we saw coming out of the elevator said, “Sam, you’re back!” We went around the corner, and another nurse, yells, “Sam!”. I didn’t know whether to cry or smile with endearment. I had both emotions. Overall, endearment though.
The encouraging text.
A nurse who tells the lab tech, “When he’s feeling good, he has the best smile. A smile that will make you smile no matter what.”
The messages of comfort on my posts.
The nurse who had us four days ago, coming to check in on Sam and said, “I’m sorry you are still here. I hope they can figure things out and get you home quickly.”
Watching Sam give the tiniest glimpse of a smile only to his sister on FaceTime.
Other nurses who’ve had Sam in the past stopping in to say “Hi”, check on him, and sometimes me.
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.
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!
Upcoming Procedures
This week Sam will have an endoscopy, sigmoidoscopy, MRI, and ENT will check to see if his trach needs to be upsized (bigger trach tube). I love when we can get lots of docs in on one sedation!
As I mentioned previously, Sam has had some GI (tummy) issues that we are hoping can get figured out, hence the endoscopy and sigmoidoscopy.
The MRI is a precaution for the seizures he's had to rule out anything serious.
Sam has not been put out in over six months!! It’s the longest he’s ever gone in his life, by far!!! Maybe since it’s been so long his PTSD won’t kick in when he sees the purple surgery p.j.’s. Fingers crossed.
Prayers for no PTST with Sam, all the docs involved, some GI answers, nothing serious on the MRI, the anesthesia team, and a smooth, quick recovery so he can get back to this kind of crazy stuff.
Boxes are the best toys.
Sam Strong and 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!
A Solid Two Days
I’m happy to report, Sam’s had two great days in a row! Sam is back to swooning all who enter the room. The rough days were due to ANOTHER infection brewing. Ugh. Darn hospitals. Thankfully, we caught and treated it quickly.
The bleeding is less. Although there is still differing of opinions on where the blood might be coming from, it’s not a huge concern right now. They are watching his hemoglobin levels, which have been overall good. If the blood continues, he will be simultaneously scoped by Pulmonology, ENT, GI, and Surgery, which we can come back for.
They have been able to control his blood pressure, with meds we can go home on, and he has been pooping. Today, for the first time in almost six weeks, he did not have any retching episodes! All good things!
The Care Conference could not have gone any better. It’s a bit emotionally overwhelming to sit in a room with several people who have played a role in saving Sam’s life the past four years. We have a good, solid plan that everyone was able to agree on. The tears were unavoidable as they thanked me for the role we’ve played at home, in caring for Sam. When they say, it takes a village, that might be an understatement when it comes to Sam.
I decided to save the best news for last. Drum roll, please. If Sam “follows the rules”, we’ll be home this weekend without the PICC line! Hallelujah!
Sam Strong!
Faith Over Fear!
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.
An Answer, With...
an easy fix! Thank you Lord!!
Sam needed a dilation. This is what we were all hoping for and the best case scenario. His esophagus was pretty much shut. A thing Sam likes to do after surgeries and in general. They didn’t dilate all the way being only three weeks post-op. Later, when he heals more, if he needs another one, we can come back for that. And that, is a one day ordeal, which is something we are accustomed to in our world.
He will rest tonight and we will slowly introduce feeds tomorrow. If all goes well, we will be here a bit longer, but will get to leave the PICC line here. Please, let us leave the PICC line here, Lord. Being on “PICC line watch” is really hard and especially hard with very busy little boy.
We also figured out why the blood is coming from his trach (breathing tube)! This morning, before surgery, ENT did a bronchoscopy. The blood is from suctioning past his breathing tube, something that shouldn’t be done too much. His airway is irritated, but it will heal.
Believing for no more surprises and the feeds to go well.
Thank you again for your prayers! Keep em’ coming!
Faith Over Fear!
Sam Strong!
Surgery Jitters
It’s now been over fifty times.
Over fifty times his little body has been put under anesthesia. Over fifty times needles, scalpels, scopes, and more have messed with his insides and outside. Over fifty times of watching my little boy slowly roll away on a hospital bed.
Just because we have done it over fifty times, doesn’t mean it gets any easier. If anything, it gets harder. The older Sam gets, the more aware he becomes of what’s going to happen. He’s a smart little boy, knows the routine, and knows it’s not going to feel good. That whole white coat syndrome you hear about, it’s a thing.
This happy little guy has been through so much. He probably won’t remember all of it, but this mama and daddy’s hearts do and will.
We can worry or trust God, but we can’t do both. We choose to trust in a God we believe has a perfect plan for Sam.
Pray for our little Superman on Wednesday. Pray for our surgery jitters. Pray for the surgeons hands, for his anesthesia team, and all the other medical staff who will be involved. Pray Sam doesn’t throw any curve balls, as he’s unfortunately infamous for. Pray for a smooth and quick recovery.
Sam Strong!
Faith Over Fear!
Cincinnati Called Today
I was thrown very off guard this morning when Cincinnati called to schedule Sam’s next surgery.“
Does July 23rd work for you?” she asked. I was thrown even more off guard! Does she know we live in MN? Does she know my son is trached?
“Yes I think it will work. We will make it work.” I responded.
Right now we’re processing. There’s a lot to think about and do in a very short amount of time. It’s exciting and nerve racking all in one.
We’ll figure it out.
We’ll get it done.
Sam Strong!
Faith Over Fear!
Cincinnati Days #4-6
We are home, exhausted, and we successfully traveled with Sam! I don’t know if I’m quite ready to travel with him for fun, but I’ll get there.
Do you want to hear the good news or bad news first? I’d love to tell you there isn’t any bad news, but then I’d be lying.
Bad news...
On Tuesday, Sam was put under for a chest CT scan. He bounced back quickly from the anesthesia like normal. Later in the day we met with a pulmonologist and a gastroenterologist. The pulmonologist had a few areas of concern from the CT scan. She reassured us, she would look further into her concerns when she was able to see better with a scope the next day. Both doctors asked a lot questions, gathering even more information than they had already received from Sam’s docs at home.
On Wednesday, Sam had a triple scope. Skip this next part of you don’t care what a triple scope is.
The scopes/OR procedure we will do are called a flexible bronchoscopy (bronch), MLB (microlaryngoscopy bronchoscopy) and EGD (esophagograstroduodenoscopy). We often refer to this as triple scopes. The bronch is with pulmonary and the physician uses a small flexible tube with a camera on the end to examine the upper airway, with a primary focus on the lungs. The MLB is with ENT using a small rigid instrument with a camera on the end to examine the upper airway to the level of the carina (which is where the lungs branch of left and right). The EGD is GI’s scope where they use a small tube with a camera on the end to examine the esophagus (throat), into the stomach, and the top part of the small intestine called the duodenum.
Anesthesia is no big deal for me.
Sam had a harder recovery, but was put under the day before and had a lot more done with the scopes. They also dilated two parts of his esophagus. He bounced back by the end of the day.
My mom’s glasses are much cuter on me. Oh, and I had a minor surgery today.
After the scopes and dilations were done, the ENT, pulmonologist, and gastroenterologist came out to give us A LOT of information. Some old news and some new. We didn’t get the hopeful news we were expecting, and we learned things about Sam we had never known before. I wish I could say the new stuff was good, but it wasn’t.
We know Sam’s trach is not coming out anytime soon and we will be making several more trips to Cincinnati.
When we left the hospital on Monday, we left thinking Sam’s trach would never come out. It’s not the end of the world, but it is a bummer when that was our expectation.
Good news...
On Wednesday, after Sam’s scopes, the same doctor from Monday gave us a little more hope. I kept asking him if there was a chance the trach could come out someday. He gave the same gentle response each time, “We have a lot of work to do before we get there.”
We prayed for answers and I would say we certainly got many.
We were definitely at the right place. Sam’s perfect imperfections are their specialty, no doubt.
Is this hard? Yes, but there are tougher things in life. At the end of the day, we have a little boy who is well worth it all. Through it all, he continues to amaze us, and everyone around him, with his strength, courage, and so much more.
The team of doctors will meet this week to discuss a plan for Sam based on his history and their own findings. We will wait patiently to see what the next steps will be.
Next Steps
Where do I begin?! Ya know that whole mentally preparing myself thing I've talk about? I don't think I did enough of that this time. Or maybe we just got a lot of overwhelming information. Or maybe it gets harder and harder to send Sam off to surgery as he gets older and more aware of what's going on. Or maybe it's a combination of both. Or maybe sometimes I have my moments.
He was super upset after surgery until he saw his mama. He fell asleep instantly, cuddled in her arms.
Sam is definitely starting to figure things out. He does just fine until everyone starts coming in to go over things. This time his anesthesiologist said he was pretty feisty when they brought him back to the operating room. Poor buddy. After looking at Sam's history, the anesthesiologist said "Wow, he's got quite the history. It's v.e.r.y rare a kid makes it to three pages." We all joked saying Sam should get a medal or trophy or something. I could have laughed or cried. I laughed. Laughing is much better for the soul.
Trying to explain everything and making it make sense to the general public is tough. I'll do my best.
ENT...
Because of the GI findings, Sam's ENT has decided to stay in the background for quite a while. He wanted us to talk to Sam's pulmonologist as he said Sam's airway is really red and inflamed. This is likely due to Sam's most recent illness, which is a whole other story. Thankfully, after looking at the pics, Sam's pulmonologist wasn't worried. The good news...the small part of Sam's airway he fixed last month was successful!
GI...
We got answers, but not the greatest news. It's a lot of info, but in short, his GI surgeon is going to talk to docs from Boston as they are stumped and not sure what to do next. After looking, they discovered his tummy surgery came undone or unwrapped. The surgery, last done in November of 2017, that's failed three times now. It's likely, the unsuccessful surgery is due to Sam's violent retching episodes, which in turn wreak havoc on his already stressed esophagus. Either way he'll have another open surgery sometime this summer. Open surgery...yuck. They will do some more tests and dilate his esophagus again in four weeks. The good news...he once again recovered beautifully!
Once again, we wait...patiently.
We are used to getting bad news and the unknown. Hope is hope, just that, and it's a phenomenal thing. We cling to hope.
"We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed."(2 Corinthians 4:8-9 NIV)
Here We Go Again
Sam will go to surgery again tomorrow (Monday). His GI surgeon and a GI doctor will stretch his esophagus again for the twenti somethingth time. His ENT will look to see if the sutures stayed intact on the bottom part of his Laryngeal Cleft, or the hole in his airway. His ENT has decided only to look and see if the surgery he did last month worked or not. Both Sam's ENT and GI surgeons are going into this, hoping to formulate a plan based on their findings.
There are SO MANY things I could worry about with Sam. Of course, I travel down that path sometimes, but it gets me nowhere except stressed and fearful. There is SO little we can control. I know we are doing everything in our control, the rest is out of our hands. We choose to let go, and let God. When that truly happens, I can tell you from experience, the stress and fear factor quickly go away.
Pray the surgery done last month on Sam's airway was successful. Pray for Sam's surgeons, anesthesiologist, and anyone else caring for him. Pray Sam will recover quickly, his docs will be able to formulate a good plan, and we will get some answers. Pray for the rest of us too. I joke, Sam recovers faster than I do when he has surgery. As you can imagine, surgery days are pretty mentally and emotionally exhausting. As always, thank you for keeping us and our Superman Sam in your prayers.
When Bad News Almost Feels Like Good News
When bad news means fixable answers to questions you've been pondering, about your child's health, sadly, it almost feels like good news.
I have to start by saying, we didn't even get asked for Sam's name when checked in at the surgery desk. I don't think that was the first time. Many of the staff in surgery are on a first name basis with Sam. It is the most lousy and endearing feeling all in one.
Today was not so great, but it could be much worse. Sam's ENT told us, "Most kids go one, two, and maybe three, but Sam goes one, two, three, four, five, six, seven, eight, nine, ten..."
In order for me not to write a book, I can tell you...
...Sam's last surgery did not work. They did part of the surgery, but the rest will not get done until all the GI (tummy) stuff gets figured out.
...his esophagus needed to be dilated, AGAIN.
...they couldn't check to see if his nissen surgery came unwrapped, which would be for the fourth time, because they weren't able to pass the scope through. They will likely do other testing to check on this.
...we will wait to see what the biopsies tell us.
...Sam will likely get a more complicated feeding tube placed when they dilate his esophagus, AGAIN in four to six weeks.
Although there was quite a bit of heavy news, everything is fixable and that is the good news. The other good news is we were able to find answers to the elcalated retching and aspiration episodes. What's another surgery when you've had more than thirty and you're not even three years old yet?! I'm close to forty and I haven't even had one people!
Even more good news, Sam recovered amazingly, once again. He makes anesthesia look easy. He makes surgery look easy. He makes hard stuff look easy, period. Maybe he really is Superman. He's our Superman, that's for sure.
"Dear brothers and sisters, when troubles of any kind come your way, consider it an opportunity for great joy.” James 1:2
The Appointment
I called Sam's ENT to find out when we were going to schedule his bronchoscopy, the test they decided to do instead of the swallow study, to find out if his last surgery worked or not. I figured since I had already talked to Sam's ENT previously, he would just say to go ahead and schedule the bronchoscopy. I was wrong. He wanted to see us in the clinic first. What?! Usually, during cold and flu season, Sam's docs try to keep us out of their offices. You see, I've known this doctor for over two years now. He doesn't give bad news over the phone. What bad news could he give us though? It didn't make sense to me. My mind was racing on why he wanted us to come to the clinic.
I didn't make up too much in my head. Here's where my thoughts went. They would do a bronchcoscopy and if the surgery didn't work, Sam's ENT would send us to Cincinnati. I'm sure you're wondering why in the world I would think that. A little history...
When Sam was first diagnosed with a Type II Laryngeal Cleft, the day after he had his third code, his ENT told us if Sam was a Type III or IV, he wouldn't touch him and would send us to Cincinnati, the pediatric airway hospital of the world. We now know Sam's cleft is a severe Type II, very close to Type III. They range from a I to a IV, a type IV being the worst case scenario. Kids with a Type IV don't generally make it. If any of that makes sense, that's why I made up he might send us to Cincinnati, which if I thought a lot about it, felt very overwhelming. I couldn't think of any other bad news he might give us. I wasn't even sure he was gong to give us bad news. I was only assuming.
I know they say, never assume, but I have to say, in this situation, I'm glad I did.
We waited about a month from the time we scheduled the appointment to the day of. Like Dr. Sues says, the Waiting Place is "a most useless place". For the most part, I was able to stay out of the Waiting Place.
Appointment day...
We learned, Sam's ENT did have us come in because he was going to deliver, what he thought, was bad news. He told us they would do another bronchcoscopy to see if Sam's surgery worked. If it didn't work, they would do the surgery again. Whew. I told him what I had made up in my head. He laughed and said he could send us there if we wanted. Nope! I know, without a doubt, our ENT has Sam's best interest in mind, and if he did not feel qualified, he wouldn't have done the surgery. I've been told by more than one person, and it's evident, he holds a special place in his heart for Sam. Every time we see him, he reminds me how sick Sam was. He is always amazed at how well Sam is doing now.
His other bad news was that it will be highly unlikely Sam will be decanulated this year because of all of his aspirating episodes. In other words, it's not likely Sam will get his trach out until next year. Also, not a big shocker for us. We had already suspected that was going to be the case, knowing he has been aspirating a lot. Again, I'm glad I assumed, better yet, mentally prepared myself for this appointment.
In the meantime, like I mentioned in my previous post, Sam has been having some new GI (tummy) issues. Next Monday, Sam will have a bronchcoscopy with two ENT surgeons with the possibility of surgery, and now they have also added an upper endoscopy with a GI doctor, to hopefully be able to answer questions on Sam's GI stuff.
Pray for Sam on Monday. The older he gets, the more aware he becomes. He will be put under for the thirty somethingth time and that doesn't mean it gets easier for him or us. Pray the last surgery worked and they will not have to do it again. Pray we will get easy, fixable answers to his GI issues.
This kid sure likes to keep a lot of really smart, highly educated people, and his family guessing. He might be adding some gray hairs, but he is definitely worth it.
