Feeds Update
Sam’s g-tube (feeding tube) feedings are going really well. He’s tolerating the small amounts we are giving him. To put it in perspective, we are slowly giving him about a med cup and a half three times a day. The mixture consists of puréed green beans, infant oatmeal, and his specialized formula. Yum.
We were very excited to finally be able to start the diet Cincinnati Children’s had told us about last May. It’s a diet they came up with for gaggy/retchy kids who don’t eat by mouth. This is Sam to a tee.
Sam’s dietitian (who is the best) has put a lot of work into figuring out this whole thing after collaborating with a Cincinnati dietician only a few times. Everyone here is excited to try it and see the results.
There are many reasons for us to hope he tolerates his feedings, but obviously, we ultimately want to avoid another surgery.
Because we are going so slow with his feeds, it will be a while before we can get rid of the PICC line. As I’ve told you in the past, bathing Sam is a two person job and downright scary. Sam LOVES the water and is constantly trying to drown himself, literally. With the trach, he can’t be fully submerged in water, but because he has no idea the consequence is deadly, he continues to try. With that in mind, washing his hair has become an art for us. Now, add a PICC line on his arm that can’t get wet. Hmmm…
Before last week, Sam hadn’t had a real bath since November. Yes, you heard me right, that’s over two months ago. For all you mamas out there who feel guilty your little ones have gone too long without a bath, don’t. Sponge baths can only go on for so long though.
Bath time with a trach, PICC line, and a feeding tube. We did it.
Hmmm…what can I do next?
HALT.
All that writing was before we ended up in the dreaded Children’s emergency department (ED). Sam’s skin at his PICC site was looking fabulous. Last week, we noticed some irritation. As the week wore on, it didn’t get better. Bummer.
After we sent another picture of Sam’s arm to his infusion nurse, she called right away, “I’m so sorry, but I think you need to take him in.” Exactly what you want to hear on a Friday at 4:00. He had zero symptoms so it felt very odd taking a happy little boy to the ED. In a weird way, it felt good to have the folks in the ED see what Sam is like when he’s himself. When we bring Sam to the ED, it’s because we have exhausted all of our home treatments and he’s miserable.
As a medical mama, you miss a lot of your other kids stuff. I’m grateful to the people in our community who are aware of this and send me pics.
Thankfully, we only stayed one night. In Sam’s history of hospital stays, a one nighter has only happened three times, and the first two were day surgeries when he was a baby, because they didn’t quite trust him yet. He was treated for cellulitis at his PICC site and twenty-four hours later, we were on our way home. Of course, everyone was happy to see him on the in patient side.
The next day around 4:30 p.m., Sam fell asleep on the couch watching his iPad. Uh oh. This is not like Sam. I hooked him up to his pulse oximeter (checked his heart rate and oxygen). His heart rate was a little elevated. Shoot, but not too concerned. As his heart rate went up, he started to develop a fever. Crap. Oh, Lord, please don’t let it be sepsis. After a few phone calls to the infusion team and his doctor, we were advised to bring him back to the hospital. Sepsis is always a cause for concern with a PICC, but the risk goes way up when you have a skin infection at the site. We packed ALL the things again and headed back to Children’s. My fear was trying to set in, but I was pouring my faith into my heart.
We checked in, they got his vitals, and we were in a room in record time. The nurse set up the blood culture labs before the doc even saw us. She was ready. The doc came in and ordered the necessary tests. They drew labs and swabbed for all the viruses. Side note. One of the beauty’s of having a PICC is not having to get poked. We waited.
Sam and Dad are sleeping and mama is praying it’s not sepsis.
The doctor came in the room and my heart beat a little faster. At that point, Sam’s labs weren’t concerning, but Sam was positive for Covid. Thank goodness!! He likely picked it up at the hospital when we were there, but who knows! Poor buddy. If you’re wondering why I was so happy about Covid, it’s because I’ll take Covid over sepsis any day. We packed everything up and headed home. It was a four hour round trip and another late night, but record ED time and we got to go home.
Other than a low grade fever, Sam’s rocking Covid so far. Praying it stays the course it is.
Thankfully, through all this, he’s still tolerating his feeds.
We were surprised when he actually left the mask on for a couple of minutes at the eye doctor.
Sam Strong
Faith Over Fear
Miracles Still Happen
We went into Sam’s procedure with high hopes and low expectations. After what happened in Cincinnati, the odds of the surgery working were not in Sam’s favor. Here’s my analogy. Let’s say you get five sutures (stitches) in your airway. Within minutes of waking up after surgery, you start throwing up every fifteen minutes. The pressure from throwing up is most likely going break open all of the fresh sutures that were just placed. It makes sense that everyone had very low expectations, that few, if any sutures would stick.
When Sam’s ENT came to talk to us before the procedure, he told us he spoke with the ENT who did the surgery in Cincinnati and heard what happened. I told him, my hope and dream is that at least two sutures stuck. High hopes, low expectations. He responded, ”We’ll see.”
Feeling a little loopy from the Versed, and although more calm, still not excited for what's about to happen.
We’re getting close to seventy times I’ve had to watch my little boy get put under sedation. At this point, we have a pretty solid routine. We see all the staff who need to meet with Sam and I before surgery, they get vitals, we go over ALL his meds and records with the nurse for the umpteenth time, I make sure the right labs will be drawn so Sam doesn't have to get poked more, sign all the paperwork, make sure Sam gets Versed, keep snuggling my poor, very stressed out little boy, and then give him one last kiss before they roll him back to the OR. I take a deep breath, say a short prayer, and the nurse (or Sean, depending on who's with me) and I walk to the cafeteria to get something to eat.
We go back to the waiting room, eat, and depending the the procedure, wait. This time, I look at Sam's nurse and start praying. Let's note, I am not always good about praying before meals. "Lord, bless our food and I pray two of the sutures will stick. It would be really great if three of them stick. And if your having a really good day, please make all five of them stick." Sam's nurse responded, "Amen." We started eating our food.
I think I forgot Sam's previous procedures usually have two to three doctors doing something or a surgery that takes longer, because I had only two bites and Sam's doctor came into the room. He said, "Well...two of the sutures stuck. And actually, three of the sutures stuck. And actually, all five sutures are still in tact." Instant tears from me and Sam's nurse. I had the same feeling in my heart, mind, and soul on the day the doctors told me they were able to attach Sam's esophagus. Pure shock. An absolute true miracle. Thank you Jesus. Sam's ENT had already called the ENT in Cincinnati to let him know, and his response was, "Wow." Enough said.
He has no idea the greatest news we just got!!!!!
Sam always has to throw a curve ball somehow. We were cleared to leave at about 12:30pm. This would have been record timing for a procedure with Sam. We started packing things up and the nurse came into the room. "Sorry, I can't let you leave, his potassium is 8.3." What does that mean?! Apparently, that is heart attack level. If I'm being honest, I had zero worry. Sam. They checked it again right away. It did go down to 7.4, but that is still very high. Lab came to draw blood from his other arm. Even after being put under, it still took three of us to hold him still. Poor buddy. The nurse laughed at me when I put the call light on to show her the new results on my phone. "4.1", I told her, "We can leave, right!?" "Yes, let's get you guys out of here!", she said.
We have been waiting for this since Sam was two months old. He had the surgery done twice here and it failed, likely because of his retching.
We really needed a big win. Thank you Lord.
Now what?
This is the first MAJOR step in being able to remove Sam's trach (breathing tube). LIFE CHANGING. Sam still has A LOT to overcome, but this surgery is a HUGE win. He will have a swallow study and see his GI (gastroenterology), ENT, and pulmonology. And then hopefully, he can start feeding therapy!!!!!!
Thank you for your continued prayers. I truly believe they have brought Sam to where he is today.
SAM STRONG
FAITH OVER FEAR
Psalm 27:14 says, "Wait on the Lord; Be of good courage, And He shall strengthen your heart; Wait, I say, on the Lord!" I find so much peace in this. When I wait on Him, it's not a waste of time. It might be incredibly hard, but it's not a waste of time. The more I wait on Him and not me or others, the more He seems strengthen my heart.
More on Cincinnati and Update
King Sean and Prince Sam
Before Sam’s surgery, we had some fun at the Cincinnati Zoo again. Sean was nervous about Sam and being around all the people, but it was nice to be able to do something “normal” with Sam since we had to have him in a bubble the month prior. Doing normal things with Sam always tugs on my mamma heart. Sam was more interested in trying to pull leaves off trees, and snatching my sunglasses off my face to throw in the ostrich cages. And, of course, his nose (filter for his trach) went flying too. So, if you go to the Cincinnati Zoo anytime soon and see the ostriches wearing sunglasses...
Okay, this gorilla is pretty cool.
My dad is way cooler than that hippo behind me.
For those of you who don't know sign language, Sam is signing "Daddy". He was telling us the lion was a daddy lion.
Our hotel didn't have a bathtub so we had to improvise. Sam thought taking a bath in the kitchen sink was great. It was a lot less stressful for Sean and I too, because Sam LOVES the water. If he was able, I think he would have his head under the water all the time. He has no idea what would happed if he completely submerged himself in water. He is very brave around water and is constantly trying to put in head under, which makes bath time and water in general, pretty stressful for us. My heart skips a beat when I think of Sam without a trach and the day he can completely submerge himself in water. I think he will be a fish. Oh happy day.
Cleaning my feeding tube.
When we knew we had to cancel our flight home because Sam was misbehaving, I instantly started looking for one way flights. It was not looking good.
We found out on a Wednesday evening, Sam would be discharged the next morning. The soonest flight out I could find was on Friday morning at $835 a piece! Not happening. The flights for the following week weren’t much better and we did not want to be stuck in Cincinnati any longer. Will and Abby were perfectly fine at home with my niece holding down the fort. I think they would have been happy if we were gone longer.
We decided to keep the rental car and drive home. We quickly packed Sean's things at Ronald McDonald House (RMH) after Sam discharged, but couldn't pass up the free toy from RMH for Sam. Of all the toys, he picked the doctor set.
Sean and I had to play a little Tetris to make everything fit in the SUV, but we did it. We were definitely homesick.
Sam does not travel lightly. And there were still six boxes waiting at the hotel for him!
Two days later, we made it home. Sam did surprisingly well with two full days of driving in a car. Sean and I were exhausted and very happy to be home. Sam was happy to see his siblings.
It has been almost six weeks since Sam's surgery. We wait one more week to find out if the surgery worked or not. When I asked the doctor in Cincinnati if he thought it was a zero percent chance the surgery worked because of what happened, his response was, “The only person who knows that, is not in the room right now. We just have to wait and see.” Hmmmmm. Faith over fear, Jamie.
Sam’s ENT trained under the ENT who did the surgery in Cincinnati. Thankfully, we don’t have to travel back to Cincinnati for Sam’s bronchoscopy to get the news. Our expectations are low and our hopes are high for the news. It’s yet another sedation for Sam. Prayers everything goes smoothly next Friday.
Like my friend said, ”I figure no news is good news.” Yes, since we’ve been home, Sam has been doing great. We’re still moving slowly on his feedings, but he started at twenty-four hours a day six weeks ago, and is now down to eleven hours a day! And barely any retching! Progress!
He has had zero signs of intussusception. We’ve all questioned if the intussusception was happening longer than we think. It’s a hard thing to catch because they can only see it on ultrasound or x-ray when it’s happening. It’s likely the other feeding tube (j-tube) is what was causing it, which then makes its less likely to happen again. Continued prayers Sam will not get intussusception again.
And BIG Happy Birthday to my sweet boy today!!!!! We've kept you alive for six years now! Everyday we get with you is a blessing we didn’t think we would get from day one. I’m incredibly thankful we live where we do, knowing in many other places, you would not have made it past the first day. Keep doing what you do best, by making other hearts a little bigger.
Faith Over Fear!
Sam Strong!
No More Surprises
Thankfully we did not have anymore big surprises and we are home!!!!!
More to come, but wanted to let everyone know Sam is out of the hospital, doing well, and we made it home.
Sam Strong!
Faith Over Fear!
Looking Up
As of right now, Sam will not need surgery. Thank you Lord!
The surgeons were pretty convinced yesterday morning Sam would need surgery based off the six ultrasounds he had throughout the night on Sunday. As they came and pressed on his tummy throughout the day yesterday and rested his belly, they became less convinced Sam would need surgery.
Today we started some Pedialyte at a very slow rate in his g-tube. Those of you who know Sam, you read right, I said his g-tube, not his j-tube. After the misery of the getting the j-tube inserted in radiology (not surgery here), surgery pulled his j-tube that evening possibly thinking it was instigating the intussusception. For a few reasons, this could be a disaster or a blessing in disguise.
One reason is the j-tube has often kept us out of the hospital when he gets sick and is not tolerating Pedialyte or formula in his g-tube (stomach). Another reason is that he is currently dependent on his j-tube for half of his daily feedings. The blessing would be, he will tolerate ALL his feedings in his g-tube and not need the j-tube. We would absolutely love only a g-tube.
The surgeon and nurse laughed at me in the middle of the night when the j-tube was pulled and the g-tube was put in when I said, ”Oh it’s so beautiful.” If you know anything about feeding tubes, you can understand my excitement. If you know Sam medically, you can understand my apprehension. It’s going to be a blessing in disguise.
The best news is Sam woke up this morning clearly feeling much better. He’s sitting up and even giving quite a few smiles. He hasn’t made any sounds yet, but I don’t think we’re far from that.
A night and day difference from yesterday!
The hotel we were staying at did not have anymore availability, but we were able to get a room at the Ronald McDonald House here and we able to cancel our flight with no fees.
I’d be lying if I told this is easy, but you know me, I like to stay focussed on the perks. It’s much better for the soul. I also believe we are in the best place possible. Cincinnati Children’s is internationally known for caring for kids with airway and esophageal disorders. It doesn’t take long having a kid like Sam to see that.
Pray Sam will tolerate his feeds, the intussusception has fixed itself, it will not recur, and for NO MORE SURPRISES!
Thank you for walking alongside us in this journey, the continued prayers, and the encouragement. They both go a long way.
Sam Strong!
Faith Over Fear!
Another Complication
Sam has intussusception again. I don’t have the energy to go into details of his day yesterday, but if you could guess, it wasn’t great.
We had some hope during the day yesterday we wouldn’t have to change our flight, but by the evening, we knew we would be staying longer. Hopefully not too much longer.
We’ll find out soon if he’ll need surgery or not.
I’m not really sure what to ask prayer for. Whatever will make Sam feel better the quickest and get us home the soonest. And so much more.
Sam Strong!
Faith Over Fear!
We Have an Answer!!!!!
X-rays showed Sam’s j-tube (the part of his feeding tube that is threaded into his small intestines) is retracted and coiled up into his stomach. As you might imagine, this is very painful. Poor buddy. No wonder why he’s in so much pain and throws up every fifteen to thirty minutes.
At home, radiology does the feeding tube procedure, but it sounds like surgery is the specialty who will do it here. Pray for a quick and smooth procedure tomorrow morning. He gets his feeding tube changed every two to three months and it’s a pretty painful experience for him. This procedure is why he has so much PTSD when he sees an x-ray table. He just had it changed two weeks ago. Poor guy. Hopefully the little bit of morphine he’s on will help.
I feel terrible for him, but this is literally the best possible, fixable answer. This poor guy can barely catch a break. He is the strongest, toughest little boy.
Pray both Sam and I will get some restful sleep tonight and this will be the only complication. We want to hopefully get out of here tomorrow and be able to catch our flight home on Tuesday!
Sam Strong!
Faith Over Fear!
Rough Go
He had a few moments of slight smiles yesterday, but overall, Sam has been pretty miserable. He threw up and retched about every half hour throughout the night, if not more. It will be a miracle if this surgery works. And it WON’T be Sam’s first miracle!!!!!
The doctors said if he can get the nausea and vomiting under control, we can leave later today. This hospital is awful nice and they do things very well, but it’s not home. I don’t like hospital stays, but when we’re home, I know the system and almost everyone knows Sam. There’s a lot of comfort in that.
Please pray Sam will not have anymore nausea, vomiting, and for no other complications. Let’s get this sweet boy out of here!
Sam Strong!
Faith Over Fear!
Airway Surgery
Sam is out of surgery and doing well. Pray for a smooth recovery and NO retching. No one knows for sure, but it’s highly likely Sam’s retching was what caused the previous surgeries to fail.
They told us surgery would be an hour, to an hour and a half. We waited for two. This kind of extra waiting is always hard. A half hour can feel like it does to a toddler, which feels really, really long. Breathe.
We weren’t planning on it, but we will be staying overnight so they can keep a close eye on him. Pray Sam will behave himself so we can go back to the hotel tomorrow.
Now we wait some more. Typically, patients come back six to eight weeks later to find out if the surgery worked or not. Sam’s new ENT in Minnesota trained directly under the ENT who did Sam’s surgery in Ohio. Thankfully, we will get to do the follow-up at home. Traveling with Sam is an experience we don’t want to do often.
We will wait patiently until July eighth to find out the good news.
Sam Strong!
Faith Over Fear!
Less Than One Week!
We are less than one week away from surgery!!!! Sam is doing great! He can’t be school, but we are doing our best to keep him busy. With the help of his teacher, his nurses are doing a great job of bringing some aspects of school home. Have I ever mentioned how thankful we are for our home care nurses? Incredibly. And, of course, the beautiful weather helps. Sam LOVES to be outside.
I am so excited and nervous all in one for this surgery. It's THE surgery that’s been in the making for over five years. It’s been done twice unsuccessfully here, but never at the place we were referred to a few years ago. We’ve had it planned in Cincinnati twice, but didn’t make it due to Sam being Sam. He was sick the first time then needed a major surgery the second time, because essentially, his organs were moving up into his chest which ended up being an over two month stay in the hospital for him. We are ready for this surgery!!!!!
If the surgery works, it would mean eventually, Sam could be decanulated (get rid of trach/breathing tube). Game changer. It makes sense why all of Sam’s doctors wanted to keep him in a bubble until this surgery. If you know me, staying in a bubble is not something I do not do very well, but I have been a good girl.
Of course, Sam had to ruffle everyone’s feathers a little bit. Long story short, Sam's pediatrician was concerned about a medicine (steroid) he has been on for the intussusception. There is a low risk it will be a problem, but steroids can hinder the healing process. The surgeon from Cincinnati called me to discuss the situation and still feels because of Sam's complicated history, already having to cancel the surgery twice, and the low risk factor, we should still proceed with surgery, but wanted us to be aware and not have this conversation the day of surgery. Your the expert! What would you do if it was your child?!?! I don't like to ask doctors this question, but in these situations, I usually do. Everyone agreed, we have Sam in a healthy spot so let's do it!
So far, Sam has stayed healthy. Prayers for continued health, flawless travel, and a successful surgery for Sam.
Sam Strong!
Faith Over Fear!
Update
I’ve been working on this update for a while, and now Sam’s landed himself in the hospital. It would have been a year in May without any unplanned hospital stays. It’s a bummer he didn’t make it to a year, but ten months is a lot to celebrate!
As of now, we know he has a Tracheitis and what looks like a stomach bug. We are still waiting on some labs and a culture. We came in yesterday morning and he was quickly admitted. He’s already made a drastic improvement since he’s been on the IV fluids.
Now for the update I’ve been working on…
We obviously had an eventful December. Who am I kidding, it’s always eventful around here. Sam is generally busy with doctor appointments, but sometimes his many specialties seem to lump together.
We were very happy to hear although his uric acid is still high, since he’s started the new med, it’s significantly lower. We will continue to see nephrology more often to draw labs and get urine samples to stay on top of his chronic kidney disease.
He’s, of course, is a champ at blood draws and it’s been a comical experience each time trying to collect a urine sample. Each nurse who has been with us for these appointments has their own humorous story of collecting a urine sample with Sam and I.
His orthopedic doctor confirmed he still has developmental hip dysplasia. Once a year, he gets x-rays to check on his hips and she gives us the results right after. I’m always amazed at how she remembers specific details about Sam and our family. It makes my mama heart full. It’s a waiting game on when this surgery will happen. The longer Sam can wait, the better it will be for him.
It usually takes at least three or four of us to hold Sam down when he gets x-rays, but I was able to do it myself. I’m always very honest with him on what’s going to happen. He has A LOT of PTSD when it comes to x-rays. I tell him over and over again, “No owies, no owies, no owies…” For some reason, he actually believed me this time and I was able to hold him myself. Success.
We learned before we went to Florida, Sam’s MRI did show some heterotopias spots, and they might or might not be related to his seizures. The bottom line is that there is no big concern for the seizures. Thankfully, he has not had one since November.
His EEG was much more successful than we gave him credit for. Sam’s nurse and I thought there was no way this was happening when we walked in and saw the amount of cords that needed to get glued to his head. Not only did it happen, he did fabulous. We concluded, the tech who did the EEG, did not fully understand the small miracle that took place in the room that day.
That was annoying!
Sam’s other specialties were uneventful. Always a bonus.
I’m excited to announce, we will be going to Cincinnati Children’s in May for Sam’s laryngeal cleft repair!!!!! If you’ve been following, this is three plus years in the making. We’ve had to reschedule twice due to Sam getting sick and having GI (tummy) complications.
Prayers for peace, comfort, easy answers, and a short stay for Sam!
Sam strong!
Faith Over Fear!
Sam is Back!
Sam was pretty much back to himself on Monday. When he gets sick, he falls hard, very fast, but he comes back just as fast. Darn tracheitis.
One of Sam’s nurses who was new to us in March has never seen Sam sick. She was here the day he started to get sick. He fell hard, fast. We had a very rough day. She’s heard me forewarn her how fast it happens with him, but when she experienced it, she couldn’t believe the actuality of it. She said she went home and cried. Enough said.
He’s better. That’s all that matters.
We are all set! Surgery is already rescheduled for September!
I am bummed we will be gone during the first week of school. If we were living in normal times with school, it would be good timing, but we’re not.
Distance learning was not a super great experience in our house, but we made the best of it. It makes me a little nervous to have the “teacher” gone the first week of school, but it will be fine. According to my daughter, the teacher (aka, me) isn’t top notch anyway. 😂
The flights, hotel, and car rental are booked again and the oxygen is approved. Thankfully, all of the medical supplies that were already shipped to the hotel can just wait a little longer. The hotel general manager had no problem keeping the extra boxes for us. Whew. This traveling thing with Sam is no cake walk, but it does get easier every time.
One day at a time.
One foot in front of the other.
Cincinnati Cancelled
Well, after talking to the docs at Cincinnati they thought it would be best to cancel Sam’s surgery and reschedule.Bummer.It is for the best though.I can’t imagine getting on a plane with him tomorrow morning. He’s a little better today, and off the oxygen so that’s good, but still very lethargic. He’s definitely starting to turn the corner though.If he were a typical kid, he would have been in the hospital a few days ago and likely intubated.As we suspected, Sam has tracheitis which is an infection in the trachea. For a typical kid, tracheitis is super rare. It’s the cursing of a having a direct access to your airway. Thankfully, for Sam, it’s always been easily treated. This means fourteen different nebulizer treatments, four times a day, an oral steroid, a little oxygen support, and mama, daddy, and/or a nurses lap.Are we thankful for home care nurses? You have no idea.Except for figuring out how we’ll handle the medical supplies already shipped to the hotel, we were able to cancel everything hassle and fee free. That was a huge relief.This is a perfect example of truly living one day at a time. Yes, it’s a bummer, but it is okay and it will be okay.We are thankful Sam didn’t end up in the hospital and he’s on the mend.Sam Strong.Faith Over Fear.
Impeccable Timing
Sam seems to have impeccable timing. He got sick right before we went to Cincinnati last time. That was six months ago! It’s by far, the longest heathy stretch he’s ever had.
He’s sick right now.
We are suppose to leave on Monday morning for Cincinnati and surgery is scheduled for Wednesday.
A LOT of planning goes into traveling with Sam. We REALLY do not want to reschedule.
We’re waiting on the results from a trach culture. It’s likely tracheitis.
We’ll take some specific prayers right now.
Pray he gets better VERY quickly and we will not have to reschedule Cincinnati. Pray if it is tracheitis, it can easily be treated. Pray we don’t end up in the hospital.
Faith Over Fear.
Sam Strong.
Pretty impressive to suction a measuring cup on your mouth for a while. I guess it’s probably not too hard when you don’t breath through your mouth or nose.
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!
Cincinnati Called Today
I was thrown very off guard this morning when Cincinnati called to schedule Sam’s next surgery.“
Does July 23rd work for you?” she asked. I was thrown even more off guard! Does she know we live in MN? Does she know my son is trached?
“Yes I think it will work. We will make it work.” I responded.
Right now we’re processing. There’s a lot to think about and do in a very short amount of time. It’s exciting and nerve racking all in one.
We’ll figure it out.
We’ll get it done.
Sam Strong!
Faith Over Fear!
Cincinnati Days #4-6
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.
Bad news...
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.
Anesthesia is no big deal for me.
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.
My mom’s glasses are much cuter on me. Oh, and I had a minor surgery today.
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.
Good news...
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.
Tips for Traveling with a Complex Child
Those of you following Sam's story, may get a little bored with this post. I've joked several times throughout the process of figuring out how we will get Sam to Cincinnati, who travels with a complex child for fun?! I'm glad, in a sense, we've been "forced" to travel with Sam. Honestly, if we hadn't, I don't know if I would have otherwise pushed myself to navigate this uncharted territory. It's my hope I can ease some anxiety of a mama or caregiver who will be traveling with a trached kiddo for the first time. Here it goes!
Have patience.
Start planning WAY in advance. The earlier you start planning, the better. I started planning over six months prior.
Ask lots of questions.
It's okay to cry throughout the process.
Rely on your child's home care nurses and respiratory therapist.
Connect with and talk to a few mamas/caregivers who have "been there, done that".
Click here to download this SUPER helpful travel checklist from Pediatric Home Service. The first page took a lot more patience than I expected it to. I had a tough time figuring out who the pediatric medical supply company in the area was, but it was worth the diligence because they have been a HUGE help. Give yourself lots of time to slowly fill out the checklist.
Decide what supplies you will have shipped to where you are staying and what supplies you will pack. Sam's home care nurses and I tracked his supplies for the same number of days we will be traveling a few months before our trip. This gave me general idea on how many supplies we would need for the trip. Keep in mind, your insurance will only cover your normal maximums. If you're still reading and don't have a complex child, we get ten to twelve boxes of medical supplies each month for Sam. Yes, we go though most of the supplies each month. That makes for a lot more extra packing when traveling with a complex child.
Connect with a general manager of where you will be we staying. Make sure they are aware you will be having medical supplies shipped there. Get a contact name you can address who the supplies will be shipped to. This will likely be foreign to them. Be very transparent. You will want the supplies to ship a day or two before you arrive.
Get a file folder to keep all of your child's paperwork. I combined a lot, but the basics are...
Hotel/Car Info.
Cincinnati - I put all the paperwork I received from Cincinnati or will need for our hospital visits. This includes Sam's itinerary and pre-op (Pre-Procedure Physical Exam) form
Plan of Care/Orders - Portable Oxygen Concentrator Approval, Statement of Medical Necessity, Plan of Care, Any other orders that may apply
Medications/Supplies - List of all of Sam's medications, List of supplies which includes the supplies we will pack and the supplies that will be shipped to the hotel
History/Scope Pics - Copy of Sam's in patient history, Cincinnati requested I bring the copies of all of Sam's scopes
Care Team Contacts - List of contact information of anyone on Sam's Care Team
If you are flying...
See if your airport has a program for traveling with children who have special needs. Sign up and go to this before you travel. In Minnesota, we have the Navigating MSP Program. The most useful part for me was going through security with all of Sam's medical supplies he needs with him at all times. Keep in mind, security will open and test every liquid.
Kids will get a chance to go in the cockpit.
Sam thought it was pretty great in the cockpit.
Take all of your child's medications with you as a carry on. We bought a backpack cooler so the meds will be easier to transport. All medications need to have their prescription labels attached.
Does your child eat by mouth? If not, ask what others have done to ease ear pain. We're going to try EarPlanes. I'll let you know if they worked or not for Sam.
OXYGEN...start this process very early in your trip planning! You cannot take oxygen tanks on an airplane so you will need to get a portable oxygen concentrator (POC) that is FAA approved. Depending on your child's oxygen needs, the FAA requires 150% battery life for every one hour of flight time. For example, based on our one and a half hour flight, Sam will need three charged batteries. The POC will need to be approved forty-eight hours before you fly. Unfortunately, your insurance will likely not cover a POC, but if you're child is on a waiver, that will. You will have to go though the process of getting the concentrator denied by your insurance before the waiver will cover it. You will not be able to fly if you do not get approval for the POC.
Call TSA Cares 72 hours before your flight to get assistance at the airport with security.
There is A LOT more I could add to this post, but these were the things that have taken up most of my time and energy. Acknowledge it's a very overwhelming process, but don't dwell on it. On the days you become too overwhelmed, quit for the day and try not to think about it.
If you fall upon this site and need to talk another mama/caregiver who's "been there, done that", please do not hesitate to reach out to me. I would be happy to answer your questions or just encourage you along the way.
We haven't traveled with Sam yet, so stay tuned for part two of “Tips for Traveling with a Complex Child”.
Our Little Boy is Back
The culture came back and as we suspected, Sam had tracheitis...again. There were two different organisms growing. It would honestly take a microbiology lesson to truly understand some of Sam's sickness'. Unfortunately, I've had a crash course in a lot of subjects I'd rather not and wasn't planning to the last three years.
For those of you who care, I found a website that gives a good explanation of tracheitis. Keep in mind, this explanation is considering a child without a tracheostomy. It sounds pretty scary and it is, but because we already know Sam is susceptible, we can treat it quickly.
Tracheitis is an infection of the trachea (breathing tube or windpipe) that is caused by bacteria. Tracheitis most frequently occurs in small children and can make it very difficult to breathe.
Tracheitis is rare, only occurring in about 1 in 1,000,000 cases and is suspected to be more prevalent in boys than girls.
Aggressive treatment early on is important in properly managing tracheitis.
Initial treatments will usually require admission into an intensive care unit where your child can be observed and intubated (breathing tube placed) if necessary. Having a breathing tube will also allow the ICU nurses to perform aggressive airway suctioning to keep your child breathing as comfortably as possible. [1]
It's virtually impossible for a child without a tracheostomy to get tracheitis. Why is Sam so susceptible to tracheitis? Because he has a direct access to his airway, his tracheostomy or breathing tube. We have our noses, sinuses, and the rest of our anatomy leading to our trachea to filter out the bad bacteria. When it tries to get stuck, we sneeze it back out. We have lots of natural mechanisms to fight this stuff off. Sam does not.
Sam was a pretty sick little boy this past week. Tracheitis is what Sam was hospitalized for back in September. If we would have brought him in this past week, chances are very high, he would have been admitted. We did everything possible to keep him out of the hospital, because we know he can catch far greater illnesses or what we call super bugs there than at home. We also didn't want to disrupt any of our travel plans coming up. That would have been a big bummer. In our last stay, Sam's Pediatric Intensivist explained how, often the parents of complex kids have a very different view of a sick kid. What a generally healthy child would be hospitalized for, a complex child is cared for at home so when they do end up in the hospital, they are very sick kiddos.
Boy, oh boy, are we thankful for our home care nurses and the other people who help out when Sam gets sick. Our home care nurses and support system are what help keep us sane.
We are so happy Sam kicked this and we were able to keep him out of the hospital. Thank you for praying for our sweet little boy.
We leave in less than a week for Cincinnati! Sam's pulmonologist has put him on "lock down" until after we get back. This means no going school and no going to therapy. Thankfully, he's a very easily entertained little boy.
We are praying for answers in Cincinnati so we can hopefully get rid of Sam's tracheostomy, aka trach!
Sources:
Hayes, Kristin. “Do You Know the Differences Between Croup and Tracheitis?” Verywell Health, Verywell Health, 15 Nov. 2019, www.verywellhealth.com/what-is-tracheitis-1192023.
Let’s Get This Over With
We leave in exactly two weeks for Cincinnati and we now have a pretty sick little boy on our hands. Even though yesterday his symptoms weren't so bad, his pulmonologist decided to go up on all his nebs, start his antibiotic neb and have us do a trach culture. I was hoping we could wait till Monday to do the culture, mostly for selfish reasons because I have to drive the specimen to Minneapolis. Yesterday, his symptoms didn't seem to merit a two hour trip there and back, so I thought...
The little boy who was running around yesterday morning, barfing here and there, but happy as could be, has barely moved off the couch today and is currently on oxygen to help keep him comfortable.
Poor buddy.
I'm so glad we didn't wait to do a trach culture. The results take seventy-two hours so we are hoping to stay out of the hospital and come up with a plan on Monday. Or even better, Sam kicks this thing before then.
Okay, so let's pray he kicks whatever this is! He needs to be healthy before we go to Cincinnati. He will be put under two of the days we are there and if he doesn't clear his pre-op appointment, our trip to Cincinnati will be postponed. Nope, not happening.
Sam went for almost two whole months symptom free! That's pretty good for Sam in the winter! Let's get this over with, little buddy. You've got this!
I believe in the power of prayer. Even if you don't, if you would throw one out there for my sweet, little boy, we would greatly appreciate it.
As always...
...Sam Strong
and...
...Faith Over Fear!
We want this guy back!
