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!
Again, I wish I could tell you we are on the path to going home.
I wish I could tell you Sam’s feeds went well when we restarted them.
His feeds are stopped again and another plan will be made tomorrow.
Our answer with an easy fix, didn’t turn out so well. The stricture (narrowing) of his esophagus is not the only issue. Sigh. Back to the drawing board.
I can tell you, Sam is otherwise doing really well. As soon as we stopped the feeds, he seemed to feel better quickly.
He’s like a caged animal right now. We do our best to keep him entertained. Thankfully, we can take wagon and stroller rides up and down the halls and we switch out the toys every couple of days. Bottom line, we, need, to, go, home. It’s feels crazy to think we did this for over seven months.
I’ve mentally prepared myself, the PICC line will be coming home. I can still hope it won’t. More than anything, I hope they/we can figure out why he’s not tolerating his feeds.
While I know you are keeping Sam in your prayers, please pray for our other three kids too. Our love for them is no different than our love for Sam.
…we have a good plan in place. Here is an extremely summarized version of the latest.
They didn’t find anything on the endoscopy. Based off Sam’s symptoms, and stopping and starting his feeds, they have narrowed down the problem to his feeds. I’ll spare you all of the medical jargon and Sam’s anatomy talk.
They will rest his bowels for the next day or so and very slowly introduce feeds. If the feeds go south again, they will do another endoscopy through his j-tube (feeding tube).
Otherwise, it may be Sam’s little gut needs more time, which means, we would be able to go home, but with a PICC line to make up for lost nutrition. Sigh. Okay, time for that good olé self talk.
The PICC line would only be temporary and we would be able to go home, where both Sam and I need to be.
On a good note, Sam had an overall good day. His strength and determination never ceases to amaze me.
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.
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.
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.
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.
It’s been a while since I’ve shared the latest on Sam. No news is good news, right? Pretty much.
It may also have something to do with distance learning, which kicked my behind. I am very glad school is out for the summer in our house. There may have been more yelling matches and apologies needed than I am proud to admit.
Sam was also able to do distance learning, which was the highlight of our days to watch. His face would light up as soon as the camera started. He thinks it’s pretty great to watch himself, and loved seeing his teacher, paras, and classmates. Our hearts melted every time.
Sam’s teacher, therapists, and paras had an end of the year virtual graduation for each child individually. His teacher dropped off a package about a week prior and had asked us to wait to open it until the graduation. Everyone talked about all the things they loved about Sam, he opened his gift and it ended with a video of pictures of Sam throughout the school year. The tears were literally streaming down my face.
This kid who isn’t suppose to be here…absolutely thriving.
Besides a few bumps, Sam has been very healthy and continues to put smiles on everyone’s faces.
As you know, I like to pull the perks in crummy situations. Most of us could agree being stuck at home wasn’t what we would choose, but there was good that came of it for us.
When Sam has just one appointment, it’s usually at least a four hour ordeal if not more. We try our best to group some appointments together in one day for less trips overall.
While quarantined, we were able to schedule Sam’s appointments virtually, which has been a huge blessing for us. An hour versus four or more out of your day is much better if you ask me and Sam is a very busy guy when it comes to doctor appointments.
One virtual appointment did lead Sam to needing an ultrasound in the near future. Unfortunately, it’s looking likely there was a complication of the surgery he had last fall, which may lead him to another surgery. Praying against yet another surgery for this guy.
Sam’s ophthalmologist wanted to see him in the clinic before his normal six month check up. Since January, he’s been closing his right eye when he is focusing on something. We thought maybe his nearsightedness had gotten worse. We were wrong. I’m not gonna lie, the thought of Sam having glasses made me a little excited. You can’t tell me, he wouldn’t be adorable. Am I right?!
The reason Sam has been closing his right eye is because his lazy eye has gotten worse. For right now, he has to wear a patch alternating eyes for an hour a day. Sam’s nurse and I practically laughed when we walked out of the clinic. There no way he’s going to tolerate that! Wrong again!
He’s been a rock star at wearing his patch. Coincidentally, his buddy next door has to wear a patch too. This definitely helps! And they couldn’t be any cuter.
Sam was finally able to get a haircut! We are always amazed at how fast his hair grows. I’ve lost track of how many haircuts he’s had. We are thankful we have someone who comes to our house to cut his hair.
I need a haircut.
Yeah, I look pretty cute.
Right now, Sam’s focus are his GI issues, which have always been a work in progress for him. The latest thing we’ve tried has been working successfully for almost a week. We’re praying this stays that way.
Obviously with Covid, we had to put the brakes on our trips, which is not such a bad thing. Yes, we want to get rid of Sam’s trach and it holds us back from things, but overall he has a good quality of life so pumping the brakes is okay. More importantly, Sam has been healthy the past few months and we are grateful for that.
We received a phone call about three weeks ago from Cincinnati, they will be calling in June or July to schedule Sam’s next surgery. My guess is our next big trip will be in the fall.
That’s all for now folks!
Thanks for staying Sam Strong even in the midst of all the chaos in our world.
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.
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.
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.
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.
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.
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!
Tomorrow, Sam will have his forty somethingth surgery. I thought this string of texts between Sam’s teacher and I was kind funny and also shows our perspective on surgery.
Me: Hello! I just wanted to let you know Sam will not be at school this Thursday (10/3) or next Wednesday (10/9). He has a pre-op and then surgery next week. He usually recovers very quickly so hopefully he will be able to be back at school the next day!
Sam’s Teacher: Wow. Ok.
Me: Lol. After sending that…I realized not everyone thinks surgery is no big deal. My world is a bit skewed. 😂
Sam’s Teacher: Perspective is everything.
Me: It sure is. 😊
Me: And attitude. 😃
Sam’s Teacher: Amen.
When Sam was in the hospital a few weeks ago, his GI doc thought it would be a good idea to scope him after he was feeling better. They will look to see if his esophagus is stricturing again. Let’s just say, based off Sam’s symptoms, all of us will be a little surprised if Sam does not need another esophageal dilation.
Once GI is done with their part, Urology will step in and do theirs. This is the 2nd of Sam’s new diagnoses I was talking about that would need surgery. The doctors assumption was correct, Sam would be having surgery in the near future. We did what Urology said, and asked to have them scheduled as well. Quickly, the surgery with both docs was scheduled, which meant we would need a pre-op exam before then. How many times does one have to have surgery in order to get a free pass on pre-op’s?! Just kidding. Thankfully, Sam’s pediatrician almost always finds time for him in her busy schedule and we got the pre-op done.
Even though surgery doesn’t seem like a big deal to us, it doesn’t mean we don’t get nervous. The easy part comes from knowing how to prepare and what to expect before and during. We know how many hours before to stop Sam’s formula and when to start and stop the Pedialyte, exactly where to park, where to go, where the bathrooms are, what the doctors, nurses, surgeons, and anesthesiologists will do and ask, and where to get something to eat. Although a little nervous, we will leave the outcome to Him.
Don’t forget to say an extra prayer for Sam tonight and tomorrow!