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!
Sam’s day has been quite rough. Man, what a roller coaster. Just when we all think he’s turning the corner, things take a sharp turn in the wrong direction.
Some symptoms are new and others have been off and on since he’s been here. This is nothing. It’s just a fluke.He will get through this.
Please pray for my little fighter. Pray his blood pressure can be controlled. Pray for no more red blood coming from his trach (breathing tube). Pray for less secretions. Pray his lungs are clear on the x-ray results. Pray for no more throwing up. Pray for his heart rate to come down. Pray for his medical team. Pray for his momma, daddy, sister, and brothers too. Pray they can get things figured out and we can go home. Pray for no more sharp turns.
…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.
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.
Let’s just say this day take took a sharp turn and we’re dealing with another set of issues. Please pray it’s just a fluke and they won’t find anything new.
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!
Sam is very sedated, but has had a pretty good day.
Thanks to Pain and Palliative, he’s been more comfortable and his pain is being managed.
When he does wake up a little, he’s really out of it, but okay, versus yesterday, if he was awake, he was crying or grimacing. Today there has been less crying, less grimacing, and less bumps of morphine. Progress.
His blood pressures have been consistently high the last week. Sam has a history of high blood pressure. Gee, I wonder why. He’s been off all of his blood pressure meds for two years. Because of his history, Nephrology put him back on a medicine for now.
He ended up with pneumonia a few days ago and yesterday, his x-rays showed a tiny pleural effusion. The increase in oxygen wasn’t enough so he ended up on a vent for extra support.
Today, they are trying feeds again, but at a much slower rate, three milliliters per hour.
Today, they will try to slowly wean him of the vent as his lungs look better on today’s x-rays.
Looks like we’ll be here longer than anticipated, but as long as he gets better, and he will, that’s okay.
You know Sam, he likes to win as many hearts as he can. Even when he’s barely moving, this kid is still stealing hearts.
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.
I cannot believe I did that for over seven months. That was an awful long four days. It’s definitely harder now that Sam is older and much more aware. At the beginning of Sam’s life, the hospital was his home. Thank God, the hospital is no longer his home, but he is fully aware of that.
Initially, they kept Sam for dehydration. Sam’s trach culture came back with an active tracheitis. Not surprising. That’s the cursing of having a trach (breathing tube). I often describe having a trach as a blessing and a cursing all in one. Essentially, Sam caught a cold and that cold turned into tracheitis. First there’s a flood of secretions, then it’s hard for him to control all of them, and that leads to almost constant retching. Usually we can run his feeding pump at a pace with Pedialyte that’s just enough to keep him hydrated. Not this time. So, I guess this is a classic example of it’s never “just a cold” for Sam.
Thankfully, Sam is on the mend and nearly back to himself.
In the past three months, Sam has been given three new diagnoses, two of which will need surgery down the road.
I’m not gonna lie, and tell you I wasn’t a bit overwhelmed after spending four days in the hospital and also learning of another diagnosis that will need surgery.
The second of the three diagnoses we found out two weeks prior to Sam’s hospitalization. We were referred to a new specialty. The doctor came into the room and jokingly said, “Well, I looked over his charts and see his one hundred fifty surgeries.” I responded with a sincere smile on my face, “Well, he hasn’t had that many, but yes, it’s been a lot.” He smiled and said, “Let’s take a look at him.” It only took him a few moments to feel and diagnose Sam. The doc nonchalantly said, “Make sure they schedule me in on the next surgery and I’ll snip, snip. My part should only take about twenty minutes.” He had some very kind words and walked out of the room. Sam’s nurse and I instantly laughed how the doc assumed Sam would be having another surgery sometime in the near future. Laughing is better than crying.
Fast forward a couple of weeks. Sam gets sick. We end up getting admitted to the hospital. While we were there, Sam wouldn’t let me put him down. Except for at night, it was him on my lap sleeping, crying, or retching. Through all this I noticed a clicking in his left hip. I brought it up to the Intensivist (cares for seriously ill infants and children or those who need a high-level of monitoring in a specialized inpatient unit). He said he could look, but he’s not the expert in that area. He tried to call an orthopedic doctor/surgeon to see if he/she would take a look, but was told they do not come up on the PICU (Pediatric Intensive Care Unit) floors and it would need to be an outpatient visit. After the third day, the clicking turned into a popping sound and seemed to be much more profound as time passed. I kept telling myself it was in my head until it got to the point you could actually see his hip almost jolt in and out of place. It sounded and felt yucky. After showing the Intensivist again the next day, he thought he would try orthopedics another time in hopes a different doc might be on. He said he would try work his magic. To my surprise, his magic worked, an orthopedic surgeon came and checked Sam out.
It wasn’t long before she diagnosed Sam. The resident doctor with her quietly said something almost under his breath to the orthopedic doc after feeling Sam’s hips. She quickly nodded her head at him and returned talking to me. That’s when I knew it wouldn’t be great news. Basically, we know Sam will eventually have another surgery that will leave him in a body cast for up to four months. Wah. Wah.
He was sent home with a brace to wear at rest until we could be seen outpatient at the specialty clinic. I’m not so sure the doc was fully aware of how active Sam is. The brace wasn’t so bad when Sam wasn’t feeling great, not so much now. We’ll do our best until then.
This stinks!
The first night wasn’t so bad.
Sam was elated to be back at school last week and sounds like everyone was happy to have him back. I believe Sam will be stay healthy and stay in school where he is thriving. Believe with me.
Sam is happy to be back at school.
Happy to be back at school.
We continue to be Sam Strong have Faith Over Fear Always.
