Naked Neck Club Update
Celebrating the Naked Neck Club!
Things are going fantastic so far. Sam is rockin' the Naked Neck Club. The hole (stoma) in his neck is still fairly open, which means he is still breathing out of his neck, so we are not out of the woods yet, but it has shrunk a lot. Still can't wait for the day that bathtime is not terrifying for us. We are still doing trach cares, but they are taking WAY less time than we are accustomed to. Not suctioning him is definitely hard to get used to, but I don't think any of us miss it. All good things!
One of the things we have noticed the most is Sam's voice is a little louder and the things he tries to say are a bit more pronounced. He is definitely experimenting more with his voice and it's a beautiful thing.
Next week, we will see his ENT and he will determine if Sam's stoma (hole) in his neck needs to be stitched. At this point, it is very likely. This isn't surprising for how long Sam had his trach.
As mentioned, Sam's spinal MRI showed some things that need further investigation. One of the things they were looking for, but thankfully did not find, was a tethered chord. He will have a colonoscopy, endoscopy, and barium enema to further investigate. This could be some answers to questions we have had for a very long time. Only hoping and praying the answers are easily fixable.
This guy doesn't seem to catch a break, but he sure handles it all like a champ. If only we could all look at life like he does on a daily basis.
Dyeing Easter Eggs
The Easter Bunny really has to get creative when you have a kiddo who doesn't eat anything by mouth. : )
Someone was into finding Easter eggs for the first time!
I've got my plates!
One of Sam's home care nurses who has been with Sam since he came home from the hospital as a baby, had her 1st baby. What a special moment.
Happy Easter!
World Down Syndrome Day
Today is World Down Syndrome Day. With Sam’s complex medical needs, this has only been another day to us.
Sam has an extra chromosome.
Sam can’t eat anything by mouth. One hundred percent of his nutrition is via a feeding tube. He breathes through his neck. Hopefully this won't be the case too much longer! Tomorrow is the BIG day!! His current list of diagnoses is longer than I thought could be possible.
If I could take away all the pain and suffering, he has gone through, I would. However, I know without a shadow of a doubt, the part I would keep is the extra chromosome.
There aren’t any easy days with Sam, but the beauty of his captivating personality and infectious smile makes every day worth it.
If you were to take away Sam’s extremely high medical needs, he is the most happy-go-lucky little guy. He smiles with his entire body, from the top of his head to the tips of his toes and lights up any room he enters.
There are no, “buts” on my love for Sam. I love him unconditionally. Period. End of sentence.
I would give anything to have a healthy little boy with an extra chromosome. Given the chance, I would not take that part away from him.
He makes me and anyone who gets to be around him, better.
I believe people who have an extra chromosome give us the tiniest glimpse of God’s love for us. The love in my little boy’s heart makes my heart want to explode, simply thinking about it.
Sam has an extra chromosome, and I am grateful for it.
Today, like any other day, I celebrate Sam’s extra chromosome.
Loving Summer
Overall, Sam is doing really well. He’s been rid of the PICC line since June! His g-tube feedings are running eighteen hours a day, which is kind of a bummer, BUT way better than having a PICC line.
He’s been happy and healthy. Healthy.
Summer is usually good to Sam. He generally stays out of the hospital and virus free. We love summer. He loves summer.
Dancing with my buddy, Hank.
Yep, that is a frog you see.
I don’t eat, but I love tasting ice cream!
We have had two doctors tell us, in order for Sam to get his trach (breathing tube) out, he needs to be successful in school for a couple of months. For them, that means stay out of the hospital and off all the hard core treatments when he does get sick. You’ve got this buddy!
I don't like getting poked so much.
Stay cool.
He recently had his lab appointment for his new specialty, endocrinology. The poor kid has so much PTSD. He knows as soon as we go through the double doors something bad is going to happen. He did great though. After the poke, he was fine. They drew labs every 15 minutes for an hour. Results will take a couple weeks. As always, we will patiently wait and hope for whatever is best for Sam.
For now, we will continue to enjoy what we have left of this good, busy, beautiful summer. And pray he can start school and stay in school.
Sam Strong
Faith Over Fear
High Hopes, Low Expectations
When it comes to certain things in life, I think it’s okay to have high hopes and low expectations. In my opinion, high hopes with high expectations, only leads to disappointment.
I generally try live by this motto, but recently I did not.
Sam was supposed to start school today. He hasn’t been in school since October. I think I was looking forward to him starting school the most. When he came down with what we think is a stomach bug yesterday, I was selfishly pretty bummed. When I shared my feelings with Sam’s dietitian, her response was,
Not selfish in my mind. You want this for Sam and it was also going to be a break for you.
She was right. Clearly in this situation, my hopes and expectations were high. Give yourself grace.
We’re still home and hoping to keep it that way. Although, we are very done with this PICC line, it might just be the thing that keeps Sam from a hospital stay.
Before he started feeling sick, he was on track to be done with the TPN (food/nutrition through his bloodstream) by the end of April, which would mean no more PICC line. His g-tube feedings have been going really well. We are hoping this doesn't set him too far back and also know he likes to throw curveballs in the mix sometimes.
The prayer is that this is a stomach bug and not an intolerance to his feedings. As a of now, we are confident he has a stomach bug and hopefully he’ll kick it quickly.
On another note, we were able to take a trip few weeks ago. If you remember from our last trip, we had some memories to last a lifetime. On our way home, our flight was canceled. We weren’t able to get on another flight home until the next day. From that, we were each given vouchers from the airline. Abby had a soccer tournament in Florida so we thought we would use those vouchers and try our luck at another trip.
I say trip because when you are traveling with young kids or someone with special needs, it's a trip, not a vacation. ; ) Although it was another eventful trip, we had a fabulous time.
Here’s a very short version.
On the way there, our flight was delayed two hours, Sam peed through his sweatpants. We had to leave his wet shirt on because he was still hooked up to his PICC line. He pooped right before we boarded the plane, which held the plane up a little longer. Thankfully, we hadn’t boarded yet. He threw his suction machine (basically his lifeline) into the ocean. Red tide hit our beaches, but we had two fabulous days on the beach. Abby sprained her ankle in her second game. Our flight home was delayed an hour and then we sat on the runway for almost another hour. When we got home, we were locked out of our house.
BUT what we remember was absolutely perfect weather and a wonderful time with family and friends. We kept our hopes high and our expectations low. We had some bumps along the way, but we expected some of those and rolled with the punches.
Sam might not be the easiest guy to travel with, let alone leave the house with, but we want him to have the best quality of life and we have chosen to do what we can to give him that and not hold our other kids back despite his complexities.
Ready to fly!
Trached kid playing is the sand. Sand in the airway, not good. Shhh...
Prayers Sam can kick this stomach bug quickly and go back to school where he makes people better!
Oh, and Happiest World Down Syndrome Day!
Sam Strong
Faith Over Fear
PICC Update
Sam has three cases managers. True story. He has one through our insurance, the state, and our home care nursing company. His insurance case manager gave me a couple of tips on how to prime (get ready) his TPN (nutrition). I’m sure it’s a combination of what I’ve been taught the past month and her tips, but I can can tell you I am having more success with no air in the line (tubing). I am comfortable with all things PICC line, but have a healthy fear of the sterile process.
What is a PICC line? Everyone knows what a PICC line is, right?! Now that we’ve been home for a bit, and have people asking more questions, I realize not everyone knows. News flash. I didn’t know what a PICC line was six years ago either.
Essentially, a PICC line is a small tube placed in a view on an upper arm close to the heart. This is a way for Sam to be able to get his minimum nutrition requirements without tube feeding. TPN is basically nutrition through your blood stream. One hundred percent of Sam’s nutrition is usually given through his feeding tube in his stomach. Because that was not going well for as long as it was, and we learned his little tummy was so irritated, a PICC line with TPN was the last resort.
We had his surgery consult. I wasn’t surprised by anything I heard. I’ve lived in this medical world long enough. The plan will be to try tube feedings after Christmas. If he’s not tolerating his feeds, they will do ANOTHER surgery in February or March. How many surgeries can one little boy’s body go through?!?!
Sam’s surgeon assured me the surgery would not be as invasive as many of his other surgeries. When I asked how long the hospital stay would be, he replied, “Usually three to five days.” He followed that with a slight chuckle. We both know Sam follows his own rules. I backed that up with, “We are going to shoot for three days, okay, maybe five.” And then I told him, “It’s not going to matter. Sam won’t need the surgery because he’s going to tolerate his feeds.”
All I want for Christmas is to be home with my family. The PICC line is going well. I suggested we don’t rock the boat and try feeds after Christmas. Sam’s surgeon agreed this was a ‘very reasonable’ plan. Spending another holiday, especially another Christmas, in the hospital is not on my bucket list. Although, Christmas is only a day. As long as we’re all together, the day we celebrate doesn’t matter so much, but being in the hospital on Christmas in no fun for anyone.
Sam is doing great. PICC line dressing changes are back to once a week and his little arm is no longer a mess. He definitely knows the infusion nurse’s voice when she walks in the door on Monday mornings. We all laughed when he gave her the side eye as she walked up the stairs this week. You can’t blame him for giving a side eye when he’s well aware I will have to sit on him and his home care nurse will have to hold his PICC line arm still while the infusion nurse changes his dressing for about fifteen to twenty minutes. He does a great job overall. His infusion nurse is always so impressed with how well he does. He’s a trooper and incredibly forgiving.
Sam’s not in school still, but being bored does seem to be a part of his personality. He loves to “organize”. Him and I have very different views on how to organize.
Time to organize.
I was pretty proud of him when he set up the little table situation all on his own with some stools pushed together and the the blanket over them.
Time to eat.
Silly Sam. The wrap around his head is suppose to be around his arm to protect his PICC line, but he likes it better as a hat.
This is a hat, not the dressing to protect my arm.
Sam’s biopsy results came back all good! As I suspected, no news was good news.
Praying you don’t hear from me until after the holidays and when you do it will be because Sam’s tube feedings are going well!
Wishing you and your family a Merry Christmas and Happy New Year!
We Stayed Home
A few weeks ago, we were very close to a hospital stay. Our normally, very busy little boy was laid up on the couch, miserable for a week. He was blasted with all the hardcore stuff we can give at home and needed some oxygen support at night for a few days.
Poor buddy.
What was the illness that almost landed him a hospital stay you ask? It was likely a cold. That’s right, an illness I wouldn’t blink an eye for with my other kids. We are so thankful we didn’t land ourselves in the hospital. It’s no fun Sam or any of us.
Sam going to school or not, has been an on going discussion in our house. If it were up to Sean, Sam wouldn't go to school at all. He thinks every time Sam goes to school, he ends up in the hospital. There is some truth to that, but there have been plenty of times we've been able to keep him home. Mind you, keeping him home and out of the hospital, is not an easy feat. I see Sean's point, and also don't want to keep him in a bubble.
I have to admit, during this last illness, keeping Sam out school crossed my mind a few times. When a common cold debilitates your child for a week, and keeps him out of school for two weeks, contemplating sending him to school or not becomes a thing. Faith over fear.
Until Sam’s doctors tell us to keep him out of school, we will continue to send him. I believe we were designed for human contact. Keeping Sam out of school might mean I am stealing from him what he can give to others. And Sam makes people better.
You make us better.
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!
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!
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!
Home Again
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.
Grateful to a friend for the gift of pressed coffee and heavy cream.
Passing the time with bubbles.
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 Strong!
Faith Over Fear!
Prayers for Today
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.
Music Therapy
Thankful for the services of Child Life.
One handed water play.
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.
I’m SO happy to have all my people here.
Sure, you can hide eggs in a hospital room.
Time to eat!
I love my siblings.
Thanks Dad.
Don’t leave.
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.
Sam Strong!
Faith Over Fear!
I’m Still Not There
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.
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.”
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
Eye Surgery Update
Except for his PTSD when we walked through the second set of double doors, Sam’s eye surgery went well. The genuine kindness and enthusiasm from the many who know him in surgery is definitely helpful. The tummy portion didn’t yield any answers, but we were able to get his feeding tube changed, which is always a bonus to get this done under anesthesia.
After Sam came out of recovery, the anesthesiologist stopped by to check on him. She commented Sam was doing much better than most kids do after this surgery. Yeah, he’s one tough little boy.
He was really miserable the first night, but has been doing really well since. The medical world never ceases to amaze me. It’s so crazy what they can do. We noticed right away, Sam’s right eye is straight!
We got a good laugh the next day when he hopped off the couch after his morning nebs and meds routine, pointed to his eye, shouting “Eye!”, in the funny way he says it, and started running. He often runs circles around our center island in our kitchen. He started his run and kept bouncing off the cupboards. Again, he noticed something was different. We couldn’t help laughing at what looked like a ball in a pinball machine.
One of Sam’s home care nurses said, he’s a reminder that things could be so much worse. He goes through so much and stays so happy all the time. Well said.
Sam Strong
Eye Surgery Tomorrow
Sam will have his first eye surgery tomorrow. The hope is this will fix both eyes and he will only need the one surgery. He will also have a scope to look at his esophagus (endoscopy).
The ophthalmologist doing the surgery explained, “Often there are kids who have one lazy eye that needs surgery to be corrected, sometimes there are kids who have two lazy eyes that need surgery to be corrected, and rarely, are there kids who have two lazy eyes and nystagmus that need to be corrected with surgery.” Yep, that sounds like Sam.
As always, pray for his doctors, nurses, anesthesia team, and anyone else involved. Pray for a smooth and quick recovery for Sam. Pray for a successful eye surgery and answers to our seemingly never ending digestive issue questions. Pray peace for our hearts.
Sam Strong!
The Icing on the Cake
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.
All tuckered out.
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.
THE END.
Going Home
We had one more full day with our family.
Cousin love.
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?!
I was too cheap to buy the photos, but they did get a few good ones!
Happy 15th Birthday Will!
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.
To be continued...
The Wedding
The next day was my niece’s wedding. This mishap is not ours, but I couldn’t leave it out of the story.
The wedding was suppose to start at 5:00. My sister-in-law had ordered flowers that were suppose to be delivered at 2:00. At 3:00, the flowers had still not arrived. After failed attempts of trying to get a hold of someone at the flower shop, it was time to figure something else out.
By looking at the beautiful flowers, that matched perfectly, you would never know this mishap even happened. The original flowers showed up during the wedding ceremony. They made for some more pretty décor and thankfully my sister-in-law did not have to pay for them.
The weather was perfect, as was the wedding.
Wedding Party
The Grant Family
To be continued...