Naked Neck Club Update
Celebrating the Naked Neck Club!
Things are going fantastic so far. Sam is rockin' the Naked Neck Club. The hole (stoma) in his neck is still fairly open, which means he is still breathing out of his neck, so we are not out of the woods yet, but it has shrunk a lot. Still can't wait for the day that bathtime is not terrifying for us. We are still doing trach cares, but they are taking WAY less time than we are accustomed to. Not suctioning him is definitely hard to get used to, but I don't think any of us miss it. All good things!
One of the things we have noticed the most is Sam's voice is a little louder and the things he tries to say are a bit more pronounced. He is definitely experimenting more with his voice and it's a beautiful thing.
Next week, we will see his ENT and he will determine if Sam's stoma (hole) in his neck needs to be stitched. At this point, it is very likely. This isn't surprising for how long Sam had his trach.
As mentioned, Sam's spinal MRI showed some things that need further investigation. One of the things they were looking for, but thankfully did not find, was a tethered chord. He will have a colonoscopy, endoscopy, and barium enema to further investigate. This could be some answers to questions we have had for a very long time. Only hoping and praying the answers are easily fixable.
This guy doesn't seem to catch a break, but he sure handles it all like a champ. If only we could all look at life like he does on a daily basis.
Dyeing Easter Eggs
The Easter Bunny really has to get creative when you have a kiddo who doesn't eat anything by mouth. : )
Someone was into finding Easter eggs for the first time!
I've got my plates!
One of Sam's home care nurses who has been with Sam since he came home from the hospital as a baby, had her 1st baby. What a special moment.
Happy Easter!
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!
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
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.
Eye Surgery Update
Except for his PTSD when we walked through the second set of double doors, Sam’s eye surgery went well. The genuine kindness and enthusiasm from the many who know him in surgery is definitely helpful. The tummy portion didn’t yield any answers, but we were able to get his feeding tube changed, which is always a bonus to get this done under anesthesia.
After Sam came out of recovery, the anesthesiologist stopped by to check on him. She commented Sam was doing much better than most kids do after this surgery. Yeah, he’s one tough little boy.
He was really miserable the first night, but has been doing really well since. The medical world never ceases to amaze me. It’s so crazy what they can do. We noticed right away, Sam’s right eye is straight!
We got a good laugh the next day when he hopped off the couch after his morning nebs and meds routine, pointed to his eye, shouting “Eye!”, in the funny way he says it, and started running. He often runs circles around our center island in our kitchen. He started his run and kept bouncing off the cupboards. Again, he noticed something was different. We couldn’t help laughing at what looked like a ball in a pinball machine.
One of Sam’s home care nurses said, he’s a reminder that things could be so much worse. He goes through so much and stays so happy all the time. Well said.
Sam Strong
Eye Surgery Tomorrow
Sam will have his first eye surgery tomorrow. The hope is this will fix both eyes and he will only need the one surgery. He will also have a scope to look at his esophagus (endoscopy).
The ophthalmologist doing the surgery explained, “Often there are kids who have one lazy eye that needs surgery to be corrected, sometimes there are kids who have two lazy eyes that need surgery to be corrected, and rarely, are there kids who have two lazy eyes and nystagmus that need to be corrected with surgery.” Yep, that sounds like Sam.
As always, pray for his doctors, nurses, anesthesia team, and anyone else involved. Pray for a smooth and quick recovery for Sam. Pray for a successful eye surgery and answers to our seemingly never ending digestive issue questions. Pray peace for our hearts.
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!
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!
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.
Another Dilation
On Monday night we strolled Sam down to surgery again. They discovered his esophagus had narrowed down quite a bit since the last dilation done, only about a week prior. It wasn’t as strictured as the the first time, but enough to have it difficult for things to pass through. They dilated again.
He rested overnight and started feeds the next day. He’s on day two of feeds. The feeds were going well, up until later this evening. We decided not go up on his feeds at the designated time, and try keep them running at the slow rate they are. He’s sleeping well now, without any symptoms. Let’s hope, pray, and believe he can continue to go up on feeds without having to stop them.
Sam’s Surgeon has decided to schedule another endoscopy for early next week. He will take a look and dilate his esophagus again if needed. For whatever reason, Sam’s esophagus thinks it needs to close up post surgeries. We may have to continue this process, which is not new to Sam, but not fun for him either. Pray his esophagus stays open and will need minimal dilations.
Home. I’ve decided not to bring it up anymore. Sam has a great team, who has his best interest at heart. Home will happen when it’s best for Sam.
Faith Over Fear!
Sam Strong!
Another Test
Today at 2:00, Sam will go down to surgery to have another test. They will do an endoscopy with contrast into his esophagus and GJ-tube (feeding tube). They are basically taking moving pictures of where things are going when he is being fed. They are mainly checking for an obstruction.
Here’s the thing, we don’t want them to find anything, but if they do and it’s an easy fix, that would be the best case scenario. Otherwise, we’re back to square one, the guessing game.
I’m not even sure what to ask you to pray for. For now, pray we can figure out what’s going on and it will be an easy fix.
Faith Over Fear!
Sam Strong!
We’re home, but...
...there are more curve balls.
Overall, Sam is doing good. We are both happy to be home. There was a day when the hospital felt like home to Sam and almost for me, but that feels like a very long time ago. Thankfully we were only there for one night.
One thing I’ve learned living in this small world of a mentally complex child for the past four years is, when there’s more than one type of doctor in your child‘s room giving you news, it’s probably not going to be good.
And it wasn’t.
The hospitalist, a pulmonologist, Sam’s gastroenterologist, and his main surgeon were in the room. Let’s just say the hospitalist was not a young buck. She had clearly been practicing medicine for a very long time. When the conversation was over, and she said, “Wow, I’ve learned A LOT today!”, I didn’t know whether to laugh or cry. I laughed, of course.
Sam did not need a dilation. There was a much bigger problem found. Basically, Sam’s stomach is in his esophagus and the rest of his gastrointestinal organs are pushing up into his chest. Sam’s gastroenterologist was able to fix the problem temporarily using the scope.
He won’t be able to have his airway surgery in Cincinnati yet. We have A LOT to figure out between Sam’s doctors here and Cincinnati.
We are hoping the temporary fix will stay until we decide what the next best steps for Sam will be.
Don’t worry, as always, Sam will knock this curve ball out of the park! Making it to first base will just fine too.
Sam Strong!
Faith Over Fear!
There’s no place like home.
Surgery and Then Some
Overall Sam's surgeries went well. The second surgery was a bit more invasive than we expected, but with a few restrictions, he was back at school the next day.
Recovery has gone well for the most part. We had to keep an eye on some bleeding, but thankfully that subsided.
About a week ago he started more secretions and then retched (threw up) the entire night. After making a call to surgery, we were advised to have Sam be seen either by his pediatrician or take him to the ED (Emergency Department). In order to avoid the ED, I was on the horn at exactly 7:30 that morning as soon as the clinic opened. Sam's pediatrician wasn't there, but we were able to see another pediatrician who also sees complex kids. So glad we were able to avoid the ED.
A small recap that morning...
Get the report from the night nurse on Sam's night after we finally got him to sleep again around 3:00am. Check the discharge paperwork to see the section on, "When to Call the Doctor". Call the doctor. Bummer...the doctor said to get him into his pediatrician or if were not able, go to the ED. Give the report to the day nurse coming on. Oh yeah, a new nurse is training today. Great day for that. Oh well, it will be good experience for her. Try to keep a smile on my face as introduce myself to the new nurse and hopefully make her feel welcomed. Wake Will and Abby up for school. Make lunches. Eventually tell Will he'll have to wear dirty socks to school after he, to no avail searched for clean ones. Take Will and Abby to school. Take a shower. Throw in a load of laundry. Run to the store to get Pedialyte since Sam couldn't tolerate his formula overnight. Throw the load of laundry in the dryer. Double check we have all five bags. Buckle Sam in his carseat. Whew! All that in only a few hours! Only twelve minutes later than when we wanted to leave! We did it! Nice work ladies!
Seeing someone who doesn't know Sam was a bit interesting. After some discussion and me giving the pediatrician a very small dose of Sam's medical history, he checked out Sam's surgery area. I knew as soon as he started fumbling over his words, he was concerned. He danced around his words until I stepped in and helped him finish what he was trying to say, "So, you think we need to get an ultrasound." He shook his head saying yes. His concern was on the left side. Sometimes I wish there could be something in Sam's charts that could forewarn medical personnel not to sugar coat things for me. It's been over the three years now and I know when doctors are giving concerning or difficult news. I wish something said, "She can handle the hard stuff and won't freak out. Give it to her straight."
Surgery met us in the ultrasound room. Knowing Sam well and his history from the beginning, she was ear to ear smiles to see how well Sam was doing overall. She also had a good chuckle when the ultrasound tech shared there was a hematoma on the left side which wasn't too concerning, but there was a small hernia on the ride side. The reason surgery had a chuckle is because she thought it was a classic Sam move to have a little twist in his story.At the end of the day, the retching was likely related to a cold Sam was brewing, which I also had to explain to the pediatrician after the ultrasound. I reassured him the throwing up wasn't something we would have brought Sam in for otherwise. We brought Sam because it was so close to surgery and they wanted to be sure the retching wasn't surgery related. I explained the retching is unfortunately the nature of Sam when he gets a cold.
With an extra boost of nebs, or twelve nebulizer treatments, four times a day, Sam seems to have fought off the cold. Thank goodness!
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)