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.
This time, seven days later, we were able to come home. Home sweet home. I was really surprised when the docs rounded that morning and said if things went well during the day, we could go home that evening. Generally, when Sam is inpatient, they make him be successful on formula for at least a day or two before we can go home. He was only on a mixture of half Pedialyte, half formula at this point. They were planning to start full formula later that morning. What?! Do I feel comfortable going home?! Absolutely! Isn’t this why we have home care nursing?!?! Before I knew going home was even on the table, I talked to Sam’s hospital nurse at shift change that morning to let her know I was hoping to leave for a bit to go have an early dinner with my husband and celebrate our anniversary. She assured me they would have someone available to sit with Sam later. We didn’t get to have dinner, but our gift of coming home was far better.
Again, Sam is not back to his normal feeds, but we’ll get there. Poor kid has lost over five pounds in the last month and he doesn’t have any fat to spare!
The prayer now is that the intussusception does not recur. It’s unlikely. We will focus on that. I asked the hospitalist what the threshold to bringing Sam in if he has similar symptoms again. He said, ”very, very low. Intussusception can be very scary…” I’m not sure what he said after that, I only know we better not hesitate if he shows any symptoms. It’s not going to be an issue, so it doesn’t matter.
Because of this second recent hospitalization, more than one of Sam’s docs highly recommended he stay out of school until after his surgery in Cincinnati. Bummer, but I get it. His pulmonologist was planning to have him quarantine two weeks before the surgery, so what’s two more weeks?
As we keep Sam in somewhat of bubble for the next month, pray he doesn’t catch anything. Like his gastroenterologist said, ”Let’s just get him to Cincinnati so he can finally have this surgery!” Agreed!
Thank you for your continued thoughts and prayers for Sam and our family.
Sam is doing great. He hasn’t had a painful episode in two full days. After resting his belly and a heavy dose of steroids, we get to start a very small amount (30 mls an hour) of Pedialyte today! Please pray his intestines will tolerate the Pedialyte.
Living in the hospital is not fun, but we make the best of it.
Easter is one of the only holidays Sam has not spent in the hospital. Sean was in charge of all things Easter this year and he nailed it with the meal and Easter baskets.
As the family was leaving yesterday, Sam started tugging on his IV to try take it off. He knows when the IV comes out, he gets to leave the hospital. Not yet buddy. I’m sorry. If that doesn’t tug at your heart strings, I don’t know what will.
Easter reminds me of hope and new life. I’m incredibly thankful for both.
and at this point, I’m pretty sure I won’t ever be.
A long time ago, I wrote how I didn’t care about Sam’s Down Syndrome diagnosis. I didn’t care then, and I don’t care now. Every story is different. I have read many stories about the devastating feelings upon receiving an initial Down Syndrome diagnosis. I can’t relate to those stories.
Let’s roll back five years. My baby is born, placed on my chest, starts coughing, and then not breathing. He’s immediately ripped from my arms and within an hour of his life, in an ambulance with my husband, going to another hospital. I don’t know what’s happening and don’t get see my baby or my husband until over twenty-four hours later. I wasn’t thinking about the possible Down Syndrome diagnosis then. I only wanted my baby to be alive. And this is only the first chapter in Sam’s lengthy novel.
If I’m being honest, those stories make me feel a little annoyed sometimes. I would give anything for a little boy with Down Syndrome who didn’t have a list of medical diagnoses longer than I thought could be possible.
If you’ve never read this poem, it’s a beautiful description of the process one goes through when they have a child with special needs.
Even as I spend yet another night in a hospital, I am happy to be in Holland. I was happy as soon as I landed there and realized I wouldn’t get to go to Italy. Yes, once in a while I wonder about Italy, but I can’t say I’m bummed about not being able to go there.
This is my story and no one else’s. It’s only my hope when someone gets the news their child will not be like most other children, they will realize quickly, although incredibly hard and exhausting, Holland is an a wonderful place to be.
To me this article applies to anyone who’s ever had a life changing event beyond their control. Or even anyone who makes plans and has expectations around those plans that don’t happen. Sometimes when we have too much to be thankful for, I think we can lose sight of the beauty around us. If you’re able to read this, my guess is, although it might be hard in the moment, you have something to be thankful for.
If you’re still sulking that you’ve landed in Holland, it’s my hope you won’t mourn over not going to Italy for too long. I’m NOT telling you Holland is easy. I’m only saying from experience, if you can focus on its beauty, and let go of the fact you won’t ever get to go to Italy, I think it will be easier to enjoy “the very special, the very lovely things… about Holland.”
We have landed ourselves in the hospital again. Ugh. He can’t catch a break.
We spent the entire day in the emergency room on Saturday. After all the routine testing and poking, we left with no answers. Grrrr.
He seemingly got better on and off, but overall was not progressing. We spent the entire day at the clinic/hospital on Tuesday getting more pokes and more tests. His pediatrician was a bit concerned. She called me that evening. She was worried. We still didn’t have any conclusive answers.
I don’t like when doctors actually use the word “worried”. It’s not a word they throw around often. It’s going be fine.
Wednesday morning, he seemed like he was getting better. Later that morning, he took a turn for the worse again. We brought him in at around two o’clock in the afternoon, and after about nine hours of waiting in the emergency department, we finally got a room at two o’clock in the morning. So tired. Coffee can cure that.
Thankfully, we were able to get answers after more poking and testing again in the emergency room.
As we were beginning to suspect, Sam has intussusception. To put it simply, this is when the intestines slide or telescope in and out of itself. As you can imagine, this can be very painful. Poor buddy. Sometimes it can fix itself, sometimes enema treatment will fix it, and sometimes surgery fixes it. It’s going to fix itself.
Okay, to anyone reading and believes that prayer can change things, let the prayers begin!
Pray Sam’s little intestines will fix themselves, he will not need treatment or surgery, and we will have a short hospital stay. This little boy does not need to add more surgeries to his already very lengthy list and needs to be home where he belongs!
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.
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.
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.
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.
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!
Getting all of Sam’s medical equipment and supplies situated on an airplane takes quite a bit of patience. One of the bummers when flying with someone who has oxygen, is they have to sit at a window seat. This makes things a bit more difficult for us, but thankfully Sam has done really well flying.
We got all of our stuff situated and sighed a big sigh of relief. Right away, I smelled a familiar smell. No, not now Sam. Remember when I told you our only option for diapers was a size too small? Yeah. When I turned to look, “it” was already coming out the back of his diaper. Oh great. What do you do with a five year old who’s pooped on an airplane?!
We were still on the ground so I unbuckled Sam and carefully picked him up. Sean followed me to the front of the plane with the diaper bag.
I explained the situation to the fight attendants. “Can we just lay him down right here?”, I asked. It was the only place I didn’t see carpet and knew this was going to be a messy situation. They politely obliged.
A messy situation might have been an understatement. As we started to change him, there was poop EVERYWHERE. We ran out of wipes. Of course we did. At this point, there was one flight attendant holding open a garbage bag, another one wetting and handing me paper towels from the bathroom, and another giving us moral support. Sean was helping wipe the poop off Sam and that, was everywhere. Bless all their hearts.
After we wiped the poop off the floor and were about to pull Sam up to put new pants on him, Sean stopped me. “Jamie, look at your arm.” For real?!?! There was literally poop from my wrist to my shoulder, on ALL sides of my arm! You cannot make this stuff up!!! You know your husband loves you when he’s holding your hand and wiping poop off your entire arm.
We remedied the situation as much as we could, obnoxiously thanked the flight attendants, and trudged back to our seats. I’m pretty sure we held the plane up a bit longer. Okay Lord, I’m done with the mishaps. Get us home safely and smoothly.
We hooked Sam up to his oxygen once we got into the air and he fell asleep shortly after. My sweet little boy was clearly exhausted. He slept for almost the entire flight. Thank you Lord. I needed that.
We were all very happy to be home, even if it was below freezing.
Like I said, we made lemonade, out of quite a few lemons on this trip. Would I do it again to not miss out on the good parts I had with my family? Absolutely.
Our flight was not scheduled to leave until 8:00 p.m. the next day. Since we had to check out of our rental by 10:00 a.m., we spent the day at the Tampa Zoo. We had a great day at the zoo and celebrated Will’s fifteenth birthday. How is he fifteen already?!
We returned our rental vehicle at the airport early in the evening. Not only did the rental company not charge us for the upgrade, they took a good chunk of money off of our total bill for the inconveniences. We took the tram to check our luggage.
As we were waiting in line, a staff member from the airlines called everyone who was flying to Minnesota up to the check in desk. She informed us, “I’m so sorry everyone, but this flight has been cancelled.” Are you serious?!?!All fifteen of our family members made it home today! Not that I didn’t want them to make it home. Why us?!?! I’d be lying if I said these thoughts didn’t come into my mind.Now, pull yourselftogether, Jamie, and never mind the “why’s”.Do I have enough medical supplies for Sam?! You can’t buy suction catheters at Target!
After four hours of waiting in the airport, the airline booked everyone on the flight a room at a nearby hotel. We waited at least another hour for the shuttle to come get us. Thankfully, I had already drawn up Sam’s nighttime meds that morning. His nighttime nebs would have to wait. To say we were all getting cranky at this point would also be another lie.
The airline was very accommodating to Sam and his medical needs. We were the first to get on the shuttle to the hotel. We were getting some major dirty looks, which made me feel sad and a little annoyed. Most people take one look at Sam, us, and all that comes with us and give us looks of sympathy. If they only knew.
It was pretty late (for us) when we finally made it into the hotel room. We were very grateful, the airline booked us two adjoining rooms. As we came into the first room, we discovered if we didn’t get two rooms, we would have had a very difficult time getting all of our luggage and Sam’s medical supplies in one room! After we got Sam’s nighttime nebs (thankfully I had packed a few extra neb cups) done, we sandwiched him in between Sean and I, and tried to go to sleep. He still sleeps in a crib so he thought this sleeping arrangement was very funny. After about forty-five minutes of me grabbing his ankle to slide him back onto the bed, he finally fell asleep.
The next morning, we got ready and packed up our obnoxious amount of stuff for the airport again. We realized we wouldn’t have enough diapers to last us through the day. Sean tried the gas station across the street from the hotel. No such luck, and the attendant told him unless you have a car, there’s nowhere close to get diapers. Great. The hotel had them, but they were going to cost us a pretty penny. Fourteen dollars for four diapers! For real?! It’s important to note for the last mishap, the diapers were a size too small.
The shuttle took us back to the airport and we checked our bags. The airline gave us meal vouchers so we ate very well for lunch.
We headed for security. We were without a TSA agent to help us this time. Going through security with Sam’s oxygen, emergency bag, suction machine, med bag, diaper bag, feeding bag, and our things is quite the ordeal. They have to check every med and test every liquid, which includes his sterile water for suctioning and all of his formula. If people stare, I wouldn’t know because my focus is on Sam and getting us through as quick as possible.
We were almost through security when a woman walked up to us. She said, ”You guys are amazing. You must do this often.” I laughed and told her, ”No, it’s only our second time traveling with him, but thank you so much for the encouragement.” She responded, ”Well you make it look flawless.” With much sincerity, I thanked her, she smiled with all her heart and walked away. It felt like an angel was sent from God in that moment. After the last twenty-four hours, she had no idea what that did for my soul. I call these little moments in life, God winks.
Sam and I had wandered off. Sam is a very busy little boy. Although he’s five, I would say he functions more at the level of an eighteen month old. That being said, we tried to let him be as busy as possible before the plane ride. We wandered back towards our boarding gate.
Sean and Will were walking towards us on a mission with somber looks on their faces. Oh no, what now?! “The flight is cancelled.”, they informed me. You have got to be kidding me!?!? No!!!!! They instantly started laughing. Hahaha, real funny you two. I think I might have cried at this point. Actually, with the lump in my throat that built up instantly, I know I would have cried. Although the flight was not cancelled, they did tell me it would be delayed another hour. Now that doesn’t seem so bad.
We were all extremely happy to board the plane and get situated in our seats about an hour later.