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!
Covid and Then Some
April was not so fun in this house, but thankfully we have all recovered. Most importantly to us, Sam is okay and we kept him out of the hospital.
It started with me not feeling too great. I already tested negative for Covid earlier in the week because we knew we had been exposed. When I started feeling cruddy, I tested again. Negative. Whew.
I had several rough days. Thank you Lord for home care nursing! On a normal day with Sam, we are incredibly thankful for our home care nurses. When he gets sick, even more grateful. Add me getting sick on top of all that. Home care nurses. No words.
Sam tested negative too, but then started getting sick a few days after I was feeling cruddy. Oh shoot. He was really sick for a good six days. He was on oxygen for four days and all the home therapies we could do that aren’t legal in most homes. We did get very close to having to bring him to the hospital, but we were able to keep him home. Again, home care nurses. Priceless.
About a week later, after I had started feeling better, I couldn’t smell or taste anything. Wait a minute!?!? I went and tested again. As I suspected...positive for Covid. What?! Those of you who have experienced these symptoms of Covid can understand how annoying it is! I’m happy to say it didn’t last too long.
Sam’s pulmonologist sent a nurse to the house to test Sam. Positive. Bummer. There was a lot of praying on my part, that he would be okay and we would be able to keep him out of the hospital.
Sean tested positive. The next day he started feeling cruddy. He was all excited to be able to get some things done around the house, but he was down for the count for almost ten days.
Will and Abby both tested negative, but had to do distance learning until their quarantine was up. Have I ever mentioned how much I love distance learning? Oh yeah, cause I don’t, not even a little. Because Abby ended up testing positive, she was able to go back to school a few days before Will. I’ve stopped trying to make sense of all the Covid rules.
During all this hoopla, I found out my grandma passed away. She was ninety-five, went peacefully, and although she was dealt a hard hand of cards in life, she lived a good life. Her legacy? She loved Jesus, taught us to pray, read our Bible, and have a relationship with Jesus.
Towards the end of her life, she could barely speak. I know she recognized us when my sister and I saw her for the first time in a long time. She clearly said two of my four children’s names. It wasn’t by chance she squeezed the two names out I have fought for on my knees in prayer countless times the past four plus years. I believe it was her heart that said those two names that day.
We didn’t get to go to her funeral, but this is where technology is a blessing. Thank you to my brother-in-law who held his phone up the entire funeral service so I could “be there”.
Me, and how I remember, my sweet Grandma.
While Sam was sick, he was scheduled to have an upper endoscopy to check on his esophagus. As we suspected, surgery needed to be rescheduled.
To recap, Sam’s last dilation was in January. His surgeon told us, when Sam can go for six months without a dilation, he’ll give us the “a-okay” to go to Cincinnati.
Tomorrow, Sam will have his rescheduled procedure. It’s been almost exactly four months since Sam’s last dilation. We are hoping and praying, he will not need to be dilated.
Sam Strong.
Faith Over Fear.
Dilation
Home sweet home.
We out!
I can’t wait to be home!
Sam was happy, but also nervous at times, when we left the hospital. He walked out with excitement, but would stop here and there, and clench my leg with with fear. I can’t imagine what was going through his head. That’s the thing about having a nonverbal child. I can read his emotions, but I also know there is so much more attached to those emotions and so much going on in that little brain of his. I would love to hear it all. Someday.
Overall, Sam has been doing well. His nights have been rough, but his days have been mostly good. Home care nurses, priceless. Both him and I are definitely happy to be home.
You couldn’t put a price tag on when Sam saw his Abby for the first time, in over six weeks. Let me remind you, Abby wanted nothing to do with having a little sister or brother five years ago. The bond they have now, is priceless.
My Abby!!
I love my Abby!
Home Sweet Home
Ahhh, home sweet home. My Elmo desk, and my spoons and forks.
Most of the time he’s happy with his spoons or forks at his favorite spot in the house, his Elmo desk. Or dancing in the living room to his toddler music.
Playing with my Abby.
Watch in’ football with my people.
Sam will have another esophageal dilation tomorrow. Unfortunately, for Sam, this is a routine procedure. We know the drill. I’m not saying the drill is easy, but we definitely have it down to a science. If you’ve ever had a child have surgery and remember the process, it’s quite the ordeal. When you’re asked to be on a committee to make the patient/family experience better, pre and post op (before and after surgery), you must be a be veteran. Yep, true story.
Pray everything goes well tomorrow. Pray for Sam’s surgeon, nursing staff, and anesthesiologist.
As always, Sam Strong and Faith Over Fear!
Happy Thanksgiving! Remember, you can always find something to be thankful for. Focus on what’s good in your life. I promise, there’s something.
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!
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!
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!
The Power of Prayer
Not too much has changed and Sam’s still miserable, but his heart rate and blood pressure have come down a little! Thank you for your prayers!
We are at a standstill until surgery comes up with a plan. Patiently, we wait.
Until then, we’ll take all the prayers!
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!
CT Scan
The Intensivist said, “His (Sam’s) CT scan was reassuring and disappointing, at the same time. Reassuring, because the CT scan didn’t show any emergencies. We were checking to see if his bowels had twisted. Disappointing, because it didn’t tell us what is going on.”
Long story, short, Sam started throwing up earlier and didn’t stop. It became more violent and frequent as time went on.
They have him sedated again and he will stay off his feeds for tonight. Surgery will put their heads together in the morning and discuss the next best steps.
This was Sam earlier today when things were going well. He’s wasn’t quite able to walk yet, but with his determination, it won’t take long.
Trying to walk again.
This will just be a little bump. Please Lord, let this be a tiny bump.
Thank you for your continued encouragement, prayers, and support. It would make this journey a lot harder without it.
Minute by Minute
Fourteen days later, Sam seems to finally have turned the corner. Thank you Lord!
It’s been mostly hard and exhausting for both Sam and I since my last post. If I’m being honest, it’s been rough since the day of surgery. Let’s not focus on that. I tried my best to capture each glimpse of hope on camera.
Day 8...
The Pulmonologist said, “I think he gave us a scare, but he looks great.” Yeah, unfortunately he’s known for that.Those scares sure do a toll on a mama and daddy’s heart. PICU docs are the last docs you want to scare, butmy little boy is a fighter.
He smiled for the first time! Oh, how I love that precious little smile. Or I should probably say big, because when he smiles, it’s with his whole entire being.
His first smile was for his Abby (sister) on FaceTime. He melted every heart in the room. The nurse got a little choked up. This little boy wants to go home, so do I, and everyone at home wants us home. We’re getting there!
Day 9...
He got his catheter out!
Day 10...
He finally pooped!
Day 11...
Sam is sitting up on his own and playing with his favorite toy-spoons.
Day 13...
No bumps of morphine!
Day 14...
Sam was actually himself the entire day today! The little boy we know, who is very medically complex, but the happiest, easily and self entertained kid was back yesterday.
Day 15...
He’s completely weaned off the drugs we can’t take home and up to full feeds. Pray for another day like yesterday and no more surprises so we can bust this joint in the next few days!
Faith Over Fear!
Sam Strong!
Superman Sam Update
For most part, we’ve been able to manage Sam’s pain. When the morphine wears off, he’s not a happy camper. The Intensivist went up a little on his morphine today, but he’s not quite to the full dose. Pray we can go down, not up.
He had another good night until they had to put a permanent cath in him because he went for a second time without peeing. Bummer, but not the end of the world. The rest of his night was good.
We tried yesterday and today to wean him off the oxygen, but that didn’t go so well. We’ll try again tomorrow. Because of Sam’s pain, he’s been on scheduled morphine, which can mess with oxygen levels and the bladder.
Sam had a very major surgery on Wednesday. All of what’s happening is not out of the norm. Although, it’s not fun to watch, all of the docs are happy with what they are seeing so far.
We are not out of the water for leaking. Keep praying for no leaking.
Sam Strong!
Faith Over Fear!
Overall, Things Are Good
Sam had a pretty good night.
He hasn’t been awake too much today, but when he is, he’s pretty ticked off. Pray for pain management.
From a surgical and PICU standpoint, things look good.
He hasn’t peed yet so we’ll take prayers for that.
Continued prayers for no leaking.
It’s so hard watching him have to go through all of this. My goodness, this little guy is so strong!
Faith Over Fear!
Sam Strong!
One Hurdle Cleared
THANK YOU for all your prayers! After over a SEVEN hour long operation, everything went a-okay.
Exhausting. It’s like you hold your breath for seven hours. Exhale.
And now for the next hurdle...recovery. The next few days will be an even bigger hurdle to jump.
Remember to breathe.
Please pray for no post-operation complications, specifically, no leaking.
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!
Next Steps
All the stars have aligned or in my opinion, God had a plan.
Overall, Sam’s been doing well. The temporary fix seems to be holding up for the most part.
I can’t help but think there was a reason we had to cancel the first trip to Cincinnati. If we would have gone and Sam would have had his airway surgery, the likelihood of the surgery being successful would be slim to none with Sam’s new diagnosis.
Again, as we suspected, the second trip was canceled as well.
If I go into the details, I’ll have to write a novel.
Our surgeon here consulted with the main surgeon in Cincinnati.
Sam is scheduled to have surgery here on September 30th. It’s a big one, with a six hour OR time slotted and a five to seven day stay in the hospital. That’s without complications.
Minor surgeries, which have been the bulk of Sam’s now fifty plus surgeries, have always gone really well for Sam. Major surgeries, on the other hand, haven’t always gone as well.
This surgery will go well, without complications.
Are we nervous? No doubt! We choose not to worry about the things we cannot control.
He will be in the best hands and we believe this will be a final fix to Sam’s GI issues.
We believe Cincinnati will follow.
Faith Over Fear!
Sam Strong!
Curve Balls...
...are a constant when it comes to Sam.
We are now less than two weeks away from surgery.
He’s been having some rough days off and on. His docs had put him on all the stuff a few days ago as a precautionary until surgery. Usually the stuff kicks in fast.
Tonight got tough.
After a phone call, his pulmonologist wanted us to bring him in. No, he’s fine. He’s been much more sick than this and we’ve kept him home. “Do you think he needs a dilation?”, she asked. “Yeah, that’s what I’m starting to think.”, I responded. She ends our conversation with, “I’m sorry.”
She knows. She knows what Sam’s been through. She knows what we’ve been through. She’s knows it better than most. She knows it’s not easy to pack him up and bring him in. She knows he’s likely okay to stay home.
She’s right though. She also knows if he’s inpatient, it will be A LOT easier and faster to get him into the operating room.
She knows his surgery got canceled a few weeks ago. She knows his surgery is rescheduled in less than two weeks.
She called me back before we left our house. “I talked to Dr. Surgeon and Dr. Gastroenterologist. [They both have names, but I like to be respectful of their privacy.] They said between the two of them, they will get Sam on the OR schedule in the morning.”
We are now sitting in the Emergency Room, waiting for a room upstairs. Waiting. Waiting. Waiting. Waiting. Waiting. When you are in the hospital, there is so much waiting. Covid makes the wait even longer.
The lV is in without too much effort. Whew. Sam isn’t always the easiest poke. Although if you could hear him cry, they would have probably heard him a few rooms down. It’s sure a lot more heart braking to watch your child scream, but no sound comes out. It’s something you never really get use to.
Maybe I’ll get some sleep tonight. I just need a little.
He’s sleeping now. That’s all that matters.
Now I know I’m not the only one praying for my family and my sweet little boy.
Tomorrow I will have good news for you.
Ready, Set, Go!
The one thing I’ve learned about having a medically complex child is it’s like running a marathon that doesn’t seem to end. I’ve never run a marathon before, but the people I know who have say it’s the hardest most rewarding experience.
I envy the ones who have persevered through 26.22 miles of running. What an incredible accomplishment.
Our Cincinnati dates are set! Sam’s next surgery is August 19th. He will have surgery to try fix why he has the trach (breathing tube). In layman’s terms, they will attempt to sew together the hole in his airway. He’s had this surgery done two times here, but it failed.
We are seeing the best of the best. Our doctors here care enough about Sam to know they are not the ones for the job anymore.
We will go back September 30th for some GI procedures and to check to see if the surgery worked.
I wish I could tell you they would remove his trach (breathing tube) if the surgery works, but he has several more things to be done in order for that to happen.
One thing at a time.
One foot in front of the other.
You know what else I’ve heard from those crazy marathon runners? It’s the call of their name they hear from a distance cheering them on that helps keeps them going.
When it comes to Sam, there are many on the sidelines cheering. Thank you for staying on the sidelines and continuing to cheer us on. You have no idea the impact it’s made.
Sam Strong!
Faith Over Fear!
What Will You Remember?
To my sweet Sam. Each year when your birthday rolls around, off and on, I become numb. The moments where my world completely stopped, become vivid in my mind more often at this time of the year.
This day four years ago our lives forever changed. The days with you can be hard, scary, long, overwhelming, and a lot of work, BUT I wouldn’t change a single thing.
You’ve made me realize even more, you never know what the stranger standing next to you has endured during this life, whether there is a smile on their face or not.
Because of you I’ve been able to meet some of the most amazing people and even though there seems to be so much chaos in the world, you continue to make me see all the good in people.
Today, and every year on this day to come, I will forever wonder what you will remember.
What will you remember?
Will you remember the day you were born when they immediately took you from me because you were turning blue?
I don’t think so.
Will you remember when you and Dad left in the ambulance without me?
No, but I will.
Will you remember I didn’t see you and Dad until over twenty-four hours later?
No, but I will.
Will you remember at the beginning when they said you would have surgery and then go home in a few weeks?
No, but I will.
Will you remember when you were four days old? Dad and I were waving goodbye to you, tears in our eyes, as they rolled you away for your first of many surgeries?
No, but I will.
Will you remember when you were scheduled for surgery, but it got canceled because you went into cardiac arrest?
I don’t know.
Will you remember when I was going home for the first time after you had been in the hospital for almost three months to take your brothers and sister to their first day of school, but couldn’t because you went into cardiac arrest again?
I wonder.
Will you remember when less than twenty-four hours later, you turned blue AGAIN, needing more than ten minutes of chest compressions this time?
Maybe.
Will you remember when the doctor would give us more bad news? He told us in order for you to have a chance at life you would need a tracheostomy? They would need to cut a hole in your throat to insert a breathing tube?!?!
No, but I will.
Will you remember the first time Dad and I had to change your trach (breathing tube)?No, but I will.
Will you remember the surgery we had been waiting for since you were born that everyone thought would be successful, wasn’t?
No, but I will.
Will you remember when they told us they would be moving you to to the PICU (Pediatric Intensive Care Unit) because NI (Neonatal Intensive Care Unit) doesn’t know how to sedate kids like PI does?
No, but I will.
Will you remember when you came back from surgery on your tummy with more chords coming from you than I could count, on a huge bed that wasn’t meant for babies?
No, but I will.
Will you remember when they stretched your lower esophagus out of your upper back and your upper esophagus out your lower back?
No, but I will.
Will you remember the balloons on your back that couldn’t move and if you would even flinch, they would quickly give you more sedation meds?
No, but I will.
Will you remember when I was weak, Dad was strong and when Dad was weak, I was strong?
No, but I will.
Will you remember when I read and sang to you everyday during your thirty-four day medically induced coma?
No, but I will.
Will you remember one day while I was reading to you and your shoulder slightly twitched as if you knew it’s what I needed that day?
No, but I will.
Will you remember when they they took you down to surgery to try connect your esophagus to your stomach again, but couldn’t?
No, but I will.
Will you remember the chest tubes?
No, but I will.
Will you remember when they told us a chunk of your lower esophagus had torn off so they threw that piece of you away, resutured, and stretched again?
No, but I will.
Will you remember the brokenness I felt being torn between staying with you in the hospital and going home to be with your brothers, sister, and dad?
No, but I will.
Will you remember when they tried to do a trach change, but you went into cardiac arrest AGAIN and needed to be reintubated?
I wonder.
Will you remember when your ENT left his clinic that day just to check on you, told me we had been through so much, hugged me, and left to return to his clinic?
No, but I will.
Will you remember all the complications?
No, and honestly, I already don’t. There were so many.
Will you remember the first time you opened your eyes after your thirty-four day medically induced coma?
No, but I will.
Will you remember when a part of me wanted you to close them again because they creepily raced back and forth?
No, but I will.
Will you remember when your nurse told me I would get to hold my baby after almost two months of not being able to?
No, but I will.
Will you remember, although you were tiny, it took four people to carefully and slowly put you into my arms?
No, but I will.
Will you remember the tears immediately streaming down my face as I held you in my arms again?
No, but I will.
Will you remember when they told me we needed nurses in our home for up to twenty hours of the day to help take care of you?
No, but I will.
Will you remember when you were you six months old and I took you on your first stroller ride, up and down the hospital halls?
No, but I will.
Will you remember how excited, yet terrified I was the day they told me we could finally bring you home?
No, but I will.
Will you remember when they put your car seat on the ambulance stretcher, all the hugs, people staring, doctors and nursing crying?
No, but I will.
Will you remember the first day you were home after spending over seven months in the hospital?
No, but I will.
Will you remember the many who thought you’d never make it out of that hospital?
No, but I will.
Will you remember the first time we went back to the hospital two weeks after you were home to get your esophagus stretched?
No, but I will.
Will you remember all the surgeries? You’ve now had over fifty and you’re not even four.
No, but I will.
Will you remember all the times we spent in the ER because the regular clinic, urgent care, or hospitals closer to us don’t know what to do with a kid like you?
No, but I will.
Will you remember for over nine months people brought meals to our house?
No, but I will.
Will you remember the MANY cards, gift cards, and gifts we received?
No, but I will.
There is so much more I will remember, but you won’t and that’s how it should be.
There are times I wonder if you will remember the four times in your life you met Jesus. I wonder if you’ll be able to speak someday and tell me all about it. Until then, I will love you like every mother loves their children.
Happy 4th birthday my sweet boy!!!! Keep on being super!!!!
Happy 4th birthday Superman Sam!
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!