Guessing Game
This poor kid. He continues to completely amaze me. He is the toughest little boy I have ever known.
On top of his esophagus being narrow, RSV, and tracheitis, the last three days, he’s had two infiltrated IV’s and intussusception again.
We played a guessing game for a few days with the intussusception. I had a light bulb moment on Thursday morning he was having intussusception again, but you can only catch it when it’s happening. To recap, we know Sam had intussusception in April and again when we were in Cincinnati in May. Needless to say, when we finally caught it on the ultrasound a few days later, I was bummed and felt validated at the same time. Because the intussusception is resolving on its own, there’s not much to do besides gut rest, which Sam’s been doing for the past week.
Thankfully, the first infiltrated IV healed on its own. The second was not as fortunate. His hand puffed up like a balloon to his elbow and because it didn’t heal on its own, they had to treat it. Oh no. This has only happened once in his life when he was a baby. I say ‘only’ because for how many times Sam has had an IV placed, that’s pretty good. I told the nurse, “I don’t want to be in the room when you do it.” I knew what treatment meant. Five needles poked in his little arm at the same time. I didn’t have it in me at that point to help hold him down. Thank you to the nurses who reassured me, it was more than okay for me to step out. We have barely and thankfully avoided another IV since then.
During all the guessing, the hospitalist said, “I always have at least one on the unit. The one who keeps me up at night when I go to bed and the one I think about when I wake up in the morning and that is you this time Sam.” If I had a dollar for every doctor I’ve heard say something like that…
It’s reassuring though. There’s comfort in knowing someone is losing sleep over figuring out your child.
Now we need Sam to start tolerating his feeds. He tolerated the Pedialyte great, but as soon as we introduce formula, he seems to go downhill. In order for us to break out of jail, he needs to be tolerating formula. You’ve got this buddy!
He’s had some pretty rough days, but today was overall good. Praying it’s all uphill from here. Prayers for continued wisdom and discernment for his doctors. Prayers for the intussusception to not come back. Prayers he will tolerate his feeds. Prayers for a restful night tonight.
Sam Strong
Faith Over Fear
The Procedure
Everything went well with the procedure yesterday. Sam’s esophagus was dilated (stretched) and this time, the doctor was able to pass the scope farther down. The last time, they were not able to get the scope through. Progress.
Generally, when Sam wakes up from anesthesia, he’s a champ. Not this time. Thankfully, he has been fever free and breathing on his own, but is pretty miserable and lethargic. We are hoping this is a combination of the RSV and being put under. It also doesn’t help he his culture showed he has a tracheitis on top of everything, which is not surprising for Sam.
He seems to be tolerating the Pedialyte we started yesterday. We are holding onto that!
Prayers he will tolerate his formula when we start it today. Prayers he will stop spitting and start swallowing. Prayers he will turn the corner today and we can go home!
Sam Strong!
Faith Over Fear!
Home
Six days later, we are home. Sam is doing great and back to his happy self. He’s not back to his normal feeds, but we’ll get there. As always, we’re on Sam time.
He, of course, won more hearts during our short stay. The hospitalist said, even when Sam was miserable, he brought a smile to his face every day. "There’s just something about him." Yeah, he does that to people.
Mama is SO happy he is feeling better.
Sam loves music therapy.
Music therapy soothes the soul.
He was so excited to see his Will and Abby. And they clearly felt the same.
It’s so great to be able to have visitors again!
I think he's ready to go home.
Both Sam and I have developed our own PTSD on this journey. For me, when it hits, it hits hard. It's a funny thing too. Sometimes I know it's going to happen and sometimes it comes out of nowhere.
If you've ever been to the Minneapolis Children's campus, there is a skyway from the clinic side to the hospital side. Sometimes there's music playing and sometimes there isn't. The music is always the same. I've walked across this skyway hundreds of times during hospital stays, going to appointments, going to surgeries, or for volunteering.
It was fairly early in the morning. I walked down to get some coffee. I don't know if it was the time of day, or that the music playing, or both, but as I walked through, the traffic I was watching seemed to move in slow motion as the sun was coming up and their lights beamed in my eyes. A lump suddenly formed in my throat and tears started to slowly roll down my cheeks. Why am I crying?! Many of the terrifying moments of Sam's life in the hospital flashed vividly through my mind. Stupid PTSD. I didn't get any coffee because the coffee shop was closed, but I got a something better after I got back.
Every single hospital room at Children’s Minnesota has a Welcome Book both in Minneapolis and St. Paul. If I’m being honest, in all my time at this hospital, I have rarely looked in this book. Sam was watching Blue's Clues on my phone. I wanted to know what the Geek Squad hours were so I could rent him an IPad. I knew the Welcome Book would have this information. As I paged through the book, I came to a screeching halt on the resource page.
There he was!!! My sweet, little miracle baby!!! I couldn’t believe it. Now mind you, a few years ago, before Covid, with all my volunteering I had done at Children’s, I was asked if Sam would do a photo shoot for their marketing purposes. Why not. We knew when he did the photo shoot, they could use the pictures for any of their marketing purposes. We signed a waiver saying so. Since then, we’ve had people text us with pictures of Sam on different Children’s ads. But, the Welcome Book?!?! That was was a shocker for me! And it filled my mama heart at the perfect time.
Superman Sam
Rotavirus Again
Sam’s lab results came back positive for Rotavirus. This is the same little tummy bug, along with a Tracheitis, that put Sam in the hospital for a little over a week last May. It’s nice to have an answer. More often than not, we are playing a guessing game with him. One of the hospitalists, who knows Sam, even jokingly commented on it.
Today was a better day. He’s tolerating a very small amount of Pedialyte. When I say small, I’m talking fifteen milliliters an hour. You know the tiny cups you get when you buy children’s pain meds like Ibuprofen and Tylenol? Picture one of those small med cups only half full. That being said, he still has a ways to go before he can be off the IV fluids and we can get the heck out of Dodge!
Prayers Sam will continue to tolerate his feeds, for his blood pressure to come down, for my other three kids, my hubby, and me.
Napping in true male fashion. 🤣
Faith Over Fear!
Sam Strong!
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!
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.
Can’t Catch a Break!
This poor kid! We’ve landed ourselves in the hospital again. His pulmonologist said to bring him in if his symptoms didn’t get better. We brought him in on Tuesday morning. You would think by now, I would pack a “just in case” bag, but I really didn’t think we would be staying. Wrong.
On day two, after all the lab work ups, x-rays, and an ultrasound, Sam has two different tracheitis’ and rotavirus. His medical team and I were actually happy for the rotavirus diagnosis and not something more serious. It’s always nice to have an answer and not continue, what feels like, the guessing game.
He’s being treated for the tracheitis’ and they want to rest his tummy for a few days with IV fluids. He’s still miserable, but I am confident it won’t last too long. Hopefully, we can bust this joint in the next day or two. Hospital stays do not get easier the more you have.
On a side note, his dilation went well last week. He did need to be dilated, BUT his surgeon said we could start planning Cincinnati!!!
Thanks for praying for our sweet little boy and the rest of our family.
Sam Strong!
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!
Second by Second
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.
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!
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.
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!
Home
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.
We continue to be Sam Strong have Faith Over Fear Always.
Home from the hospital and feeling better.
Admitted.
In the two and a half years Sam has been home from the hospital, we have made many trips to the emergency department (ED). In those two and a half years, we've always been able to go home, which according to everyone here is just shy of a miracle given Sam's history. Although we love the people here, we do everything we can to stay out of here.
Unfortunately, there isn't a clinic or urgent care for Sam. When things go south, it's either maintain at home or go to the hospital. And unless Sam's feeding tube comes out or one of his docs wants him to be evaluated, we do our best to maintain at home.
Poor buddy isn’t feeling so great.
Based off Sam's symptoms, Sam's GI (gastroenterologist) doc instructed us to take him in yesterday. I was a little shocked when the ED doc thought it would be best to keep him. I, of course, did not plan for getting admitted. No extra clothes or toothbrush for me. I feel like I have to keep apologizing for my stinkiness. 😂
I thought once Sam got some IV fluids in him, he would perk up and we'd be heading home. Not so much. He's still the same little lethargic boy we brought here yesterday. He's not worse, but not better either.
Even after fluids, he’s still not feeling so hot.
They are checking all the boxes and are trying to figure out what's going on. It could be tracheitis, which doesn't show up for twenty-four to seventy-two hours. He might need another dilation. It could be just a cold. Although, like I've said in the past, it's never "just a cold" for Sam. There are plenty of places he could have caught something. The two biggies are starting school and being in the ED last week cause his feeding tube came out. School = germs and the ED = even scarier germs. They are also monitoring his blood pressure as it has been elevated. With his history of hypertension, there is concern, but they could also be up because he's sick. Again, there are so many things it could be. There are usually no easy answers with Sam. He a complicated kid.
Let's pray whatever it is, it will run it's course and/or get fixed without complications. As of now, he needs to tolerate feeds before we go home.
As always, staying Sam Strong.