Prayers Answered
There will be no positive blood culture. Check. Sam will kick this virus quickly. Check. There will be no more seizures. Check. We can continue to manage his fevers. Check. He will be ‘healthy’ enough for surgery tomorrow. Check.
Each specific prayer request was answered. Thank you! They were able to get Sam on the surgery schedule earlier in the day than planned, and we were able to discharge that night, which meant a four day stay. We'll take it!
Adenovirus. What is it you ask? I had quite a few people asking me about this. The reason you've likely never heard of it is because it's not something you'd probably go to the doctor for or bring your kids to the doctor for. It's not a typical test that would be run either. Symptoms are generally mild unless you have a weakened immune system. Sam. For Sam, testing for many viruses is helpful in ruling out a bloodstream infection. If Sam didn't have this PICC line, I'm guessing we would have avoided this hospitalization.
They put his new PICC line in his left arm. We were grateful for this. His poor skin needed a break on his right arm. Sam has always had very sensitive skin. This doesn't pair well when adhesive is needed on your skin for a long period of time. We are hopeful we have figured out his dressing change potion so that we can avoid any skin breakdown this time around. Prayers for no skin breakdown and no new allergic reactions.
I am very thankful for this PICC line and I will be happy to be done with it! His surgeon did his dilation before they placed the new PICC line. He talked again about the surgery he would do if Sam does not tolerate his feedings. Continued prayers Sam will tolerate the max amount of his nutrition through his feeding tube so we can be done with this PICC and avoid another surgery!
Sam Strong.
Feeling better.
Faith Over Fear.
PICC Update
Sam has three cases managers. True story. He has one through our insurance, the state, and our home care nursing company. His insurance case manager gave me a couple of tips on how to prime (get ready) his TPN (nutrition). I’m sure it’s a combination of what I’ve been taught the past month and her tips, but I can can tell you I am having more success with no air in the line (tubing). I am comfortable with all things PICC line, but have a healthy fear of the sterile process.
What is a PICC line? Everyone knows what a PICC line is, right?! Now that we’ve been home for a bit, and have people asking more questions, I realize not everyone knows. News flash. I didn’t know what a PICC line was six years ago either.
Essentially, a PICC line is a small tube placed in a view on an upper arm close to the heart. This is a way for Sam to be able to get his minimum nutrition requirements without tube feeding. TPN is basically nutrition through your blood stream. One hundred percent of Sam’s nutrition is usually given through his feeding tube in his stomach. Because that was not going well for as long as it was, and we learned his little tummy was so irritated, a PICC line with TPN was the last resort.
We had his surgery consult. I wasn’t surprised by anything I heard. I’ve lived in this medical world long enough. The plan will be to try tube feedings after Christmas. If he’s not tolerating his feeds, they will do ANOTHER surgery in February or March. How many surgeries can one little boy’s body go through?!?!
Sam’s surgeon assured me the surgery would not be as invasive as many of his other surgeries. When I asked how long the hospital stay would be, he replied, “Usually three to five days.” He followed that with a slight chuckle. We both know Sam follows his own rules. I backed that up with, “We are going to shoot for three days, okay, maybe five.” And then I told him, “It’s not going to matter. Sam won’t need the surgery because he’s going to tolerate his feeds.”
All I want for Christmas is to be home with my family. The PICC line is going well. I suggested we don’t rock the boat and try feeds after Christmas. Sam’s surgeon agreed this was a ‘very reasonable’ plan. Spending another holiday, especially another Christmas, in the hospital is not on my bucket list. Although, Christmas is only a day. As long as we’re all together, the day we celebrate doesn’t matter so much, but being in the hospital on Christmas in no fun for anyone.
Sam is doing great. PICC line dressing changes are back to once a week and his little arm is no longer a mess. He definitely knows the infusion nurse’s voice when she walks in the door on Monday mornings. We all laughed when he gave her the side eye as she walked up the stairs this week. You can’t blame him for giving a side eye when he’s well aware I will have to sit on him and his home care nurse will have to hold his PICC line arm still while the infusion nurse changes his dressing for about fifteen to twenty minutes. He does a great job overall. His infusion nurse is always so impressed with how well he does. He’s a trooper and incredibly forgiving.
Sam’s not in school still, but being bored does seem to be a part of his personality. He loves to “organize”. Him and I have very different views on how to organize.
Time to organize.
I was pretty proud of him when he set up the little table situation all on his own with some stools pushed together and the the blanket over them.
Time to eat.
Silly Sam. The wrap around his head is suppose to be around his arm to protect his PICC line, but he likes it better as a hat.
This is a hat, not the dressing to protect my arm.
Sam’s biopsy results came back all good! As I suspected, no news was good news.
Praying you don’t hear from me until after the holidays and when you do it will be because Sam’s tube feedings are going well!
Wishing you and your family a Merry Christmas and Happy New Year!
HOME!
After seven days, Sam was able to come home! We are very thankful he is feeling better and it was a short stay, in our world.
If I added correctly, Sam has spent ten plus months of his life in the hospital and he’s only four. That also means he’s spent much more of his life at home. I’m not discounting the time in the hospital. I’m also not saying tears aren’t shed from exhaustion and other things on my part and pain and exhaustion on his. I’m not saying this isn’t REALLY, REALLY hard. I’m not saying to ignore the bad, but in my experience when we focus on the good instead of the bad, it’s harder for the negative to steal your joy.
FaceTime allowed me to stay on the phone with my daughter, off and on, for over three hours to “help” her bake a cake. She had some bumps along the way, but she didn’t give up. It was still pretty good four days later, when I was home to try it. I was a proud mama.
Every time we’re here, most of my family adapts with ease.
Every time we’re here, we meet more great nurses, doctors, respiratory therapists, etc.
Every time we’re here, I learn new tricks to help Sam and I adapt to living in a hospital.
Every time we’re here, Sam steals more hearts.
With an IV in, Sam can only use one hand. I get mesmerized by how he uses his one hand to play when he starts feeling better. The smarty pants even uses his mouth to push toys and objects in place.
This is the life of Sam. We didn’t choose it, but we have learned to adapt, be flexible, and make lemonade out of lemons. And this guy is SO worth it all.
Peek-a-boo!
I’m getting good at playing one handed.
Dilation #5 Update
I suppose no news is good news, right? For the most part, yes.
Sam’s dilation went very well. His esophagus was very narrow, but not as narrow as the last time he got dilated. Good news!
Again, we wait. If symptoms begin, we call surgery and they get Sam on the schedule. Generally, his symptoms consist of retching (throwing up), which start to become more frequent and violent as time goes on. Eventually, he’s not able to control his secretions, so he spits a lot too. Basically, he still creates secretions (spit), but if his esophagus is narrow enough or closed, there is no other place for the secretions to go except out his mouth. This makes for a very nauseous little boy. Poor guy.
After Sam’s dilation, his surgeon discussed WHEN Sam is able to go three months without a dilation, then he’ll plan to get Sam on the schedule to look at his esophagus. If things look good and open, we wait again. When Sam can go for at least six months without a dilation then his surgeon will feel good about us planning another trip to Cincinnati to hopefully get his airway fixed.
Sam also had a granuloma cauterized or how I like to make it more visual for you, the extra skin on the hole in his throat, sizzled off by a fire pen. This went well too. Although, it was a lot to look at after. For the next week or so, we cleaned gross puss and what looked like black soot around his trach site. Yuck and again, poor guy! Thankfully, it all healed very nicely.
The day after Sam’s dilation he seemed like he was recovering well. When he woke up the next morning, things went south very quickly. He ended up with a tracheitis. He had a couple of very rough days. We were able to catch this right away and treat the nasty, airway bacterial infection. Along with our hard work and the antibiotic nebs, like magic, Sam was back to his lively self in no time. Thank you for home care nurses!
Except for the spitting. No, not another thing, little buddy. His demeanor was back to his norm, but he wouldn’t swallow his secretions. Per Surgery we should bring him in to be evaluated in the next couple of days, unless things got worse, which for Sam means going to the ED (Emergency Department). Not the dreaded ED.Besides him not swallowing his secretions, he seems totally fine. Sometimes I wish they had another place for complex kids to go in these situations.
The next day, after talking with Sam’s Pulmonologist, she too thought he should be evaluated. Bummer.
We had planned to take him in early the next morning, knowing the less busy times of the ED. Sam had different plans. Good plans! When he woke up, the spitting had stopped!!! Thank you Lord!!!
Sam has been back to his spunky self, continuing to teach us what life is all about.
Sam Strong!
Faith Over Fear!
Dilation #5
Sam will have another dilation tomorrow. Yes, he’s had WAY more than five dilations, but I started the count over after his last major surgery. We are hoping and praying he won’t need as many as the first time around.
In the four plus years, Sam’s had a trach (breathing tube) and feeding tube, he hasn’t had to have a granuloma cauterized (burned off), which is pretty good. This is basically skin starting to grow where it shouldn’t. Before the dilation, he’ll have a tracheal granuloma cauterized. Typically, this can be done in the clinic, but Sam’s ENT thought it would be better for Sam under anesthesia, also knowing he could do it alongside one of Sam’s dilations. We were very thankful for this. Sam’s nurse and I were not looking forward to having to hold him down for that procedure!!
We are also thankful, Sam will get his feeding tube changed in surgery tomorrow. As I’ve said before, this is a procedure he gets done routinely every two to three months. It now takes three, sometimes four of us to hold Sam down. As soon as he sees an x-ray table now, his little body clenches me with fear. We have to literally peel him off of me, to get him on to the table. It’s a fairly quick procedure, but I’m sweating by the time it’s over. Sam’s one tough cookie, so when he’s sobbing hysterically throughout the procedure, we know it must be painful.
We are thankful to be able to knock out three procedures in one tomorrow!
We’ll take some extra prayers tomorrow for Sam’s Surgeon, ENT, and anesthesia team. Pray for a smooth and quick recovery.
Sam Strong!
Faith Over Fear!
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!
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!
Classic Sam
I wish I could tell you the last few days have been better, not worse.
I wish I could tell you his recovery is going smoothly.
I wish I could tell you we’ve been able to manage Sam’s pain.
I wish I could tell you we went down on the oxygen, not up.
I wish I could tell you Pseudomonas was not growing on the trach culture we decided to do the other day.
I wish I could tell you Sam’s turning the corner and he’s not been miserable the last few days.
I wish I could tell you we’ve gotten a good nights sleep the last few days.
I wish I could tell you Sam is using all of his signs (language) he knows and not just “help”.
I wish I could tell you he’s on less pain meds and has less IV poles, not more.
I wish I didn’t have tell you, he will be getting a PICC line later today.
I wish I could tell you we’re getting ready to go home.
I can tell you, we were able to take out his NG tube this morning, which has been hard to keep in the last few days.
I can tell you, clinically, leaking doesn’t look like what’s going on.
I can you, all of the appropriate measures are being taken to figure out the problem.
I can tell you, Pain and Palliative is now on board. They have been a game changer for Sam in the past.
I can tell you, although he’s on a lot more meds and pretty much sedated right now, he’s finally been comfortable for the last hour.
I can you, my little boy is a fighter and he will come out on top.
Please don’t stop praying for my sweet little boy.
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!