More on Cincinnati and Update

King Sean and Prince Sam

Before Sam’s surgery, we had some fun at the Cincinnati Zoo again. Sean was nervous about Sam and being around all the people, but it was nice to be able to do something “normal” with Sam since we had to have him in a bubble the month prior. Doing normal things with Sam always tugs on my mamma heart. Sam was more interested in trying to pull leaves off trees, and snatching my sunglasses off my face to throw in the ostrich cages. And, of course, his nose (filter for his trach) went flying too. So, if you go to the Cincinnati Zoo anytime soon and see the ostriches wearing sunglasses…

Our hotel didn’t have a bathtub so we had to improvise. Sam thought taking a bath in the kitchen sink was great. It was a lot less stressful for Sean and I too, because Sam LOVES the water. If he was able, I think he would have his head under the water all the time. He has no idea what would happed if he completely submerged himself in water. He is very brave around water and is constantly trying to put in head under, which makes bath time and water in general, pretty stressful for us. My heart skips a beat when I think of Sam without a trach and the day he can completely submerge himself in water. I think he will be a fish. Oh happy day.

When we knew we had to cancel our flight home because Sam was misbehaving, I instantly started looking for one way flights. It was not looking good.

We found out on a Wednesday evening, Sam would be discharged the next morning. The soonest flight out I could find was on Friday morning at $835 a piece! Not happening. The flights for the following week weren’t much better and we did not want to be stuck in Cincinnati any longer. Will and Abby were perfectly fine at home with my niece holding down the fort. I think they would have been happy if we were gone longer.

We decided to keep the rental car and drive home. We quickly packed Sean’s things at Ronald McDonald House (RMH) after Sam discharged, but couldn’t pass up the free toy from RMH for Sam. Of all the toys, he picked the doctor set.

Sean and I had to play a little Tetris to make everything fit in the SUV, but we did it. We were definitely homesick.

Sam does not travel lightly. And there were still six boxes waiting at the hotel for him!

Two days later, we made it home. Sam did surprisingly well with two full days of driving in a car. Sean and I were exhausted and very happy to be home. Sam was happy to see his siblings.

It has been almost six weeks since Sam’s surgery. We wait one more week to find out if the surgery worked or not. When I asked the doctor in Cincinnati if he thought it was a zero percent chance the surgery worked because of what happened, his response was, “The only person who knows that, is not in the room right now. We just have to wait and see.” Hmmmmm. Faith over fear, Jamie.

Sam’s ENT trained under the ENT who did the surgery in Cincinnati. Thankfully, we don’t have to travel back to Cincinnati for Sam’s bronchoscopy to get the news. Our expectations are low and our hopes are high for the news. It’s yet another sedation for Sam. Prayers everything goes smoothly next Friday.

Like my friend said, ”I figure no news is good news.” Yes, since we’ve been home, Sam has been doing great. We’re still moving slowly on his feedings, but he started at twenty-four hours a day six weeks ago, and is now down to eleven hours a day! And barely any retching! Progress!

He has had zero signs of intussusception. We’ve all questioned if the intussusception was happening longer than we think. It’s a hard thing to catch because they can only see it on ultrasound or x-ray when it’s happening. It’s likely the other feeding tube (j-tube) is what was causing it, which then makes its less likely to happen again. Continued prayers Sam will not get intussusception again.

And BIG Happy Birthday to my sweet boy today!!!!! We’ve kept you alive for six years now! Everyday we get with you is a blessing we didn’t think we would get from day one. I’m incredibly thankful we live where we do, knowing in many other places, you would not have made it past the first day. Keep doing what you do best, by making other hearts a little bigger.

Faith Over Fear!

Sam Strong!

No More Surprises

Thankfully we did not have anymore big surprises and we are home!!!!!

More to come, but wanted to let everyone know Sam is out of the hospital, doing well, and we made it home.

Sam Strong!

Faith Over Fear!

Looking Up

As of right now, Sam will not need surgery. Thank you Lord!

The surgeons were pretty convinced yesterday morning Sam would need surgery based off the six ultrasounds he had throughout the night on Sunday. As they came and pressed on his tummy throughout the day yesterday and rested his belly, they became less convinced Sam would need surgery.

Today we started some Pedialyte at a very slow rate in his g-tube. Those of you who know Sam, you read right, I said his g-tube, not his j-tube. After the misery of the getting the j-tube inserted in radiology (not surgery here), surgery pulled his j-tube that evening possibly thinking it was instigating the intussusception. For a few reasons, this could be a disaster or a blessing in disguise.

One reason is the j-tube has often kept us out of the hospital when he gets sick and is not tolerating Pedialyte or formula in his g-tube (stomach). Another reason is that he is currently dependent on his j-tube for half of his daily feedings. The blessing would be, he will tolerate ALL his feedings in his g-tube and not need the j-tube. We would absolutely love only a g-tube.

The surgeon and nurse laughed at me in the middle of the night when the j-tube was pulled and the g-tube was put in when I said, ”Oh it’s so beautiful.” If you know anything about feeding tubes, you can understand my excitement. If you know Sam medically, you can understand my apprehension. It’s going to be a blessing in disguise.

The best news is Sam woke up this morning clearly feeling much better. He’s sitting up and even giving quite a few smiles. He hasn’t made any sounds yet, but I don’t think we’re far from that.

The hotel we were staying at did not have anymore availability, but we were able to get a room at the Ronald McDonald House here and we able to cancel our flight with no fees.

I’d be lying if I told this is easy, but you know me, I like to stay focussed on the perks. It’s much better for the soul. I also believe we are in the best place possible. Cincinnati Children’s is internationally known for caring for kids with airway and esophageal disorders. It doesn’t take long having a kid like Sam to see that.

Pray Sam will tolerate his feeds, the intussusception has fixed itself, it will not recur, and for NO MORE SURPRISES!

Thank you for walking alongside us in this journey, the continued prayers, and the encouragement. They both go a long way.

Sam Strong!

Faith Over Fear!

Another Complication

Sam has intussusception again. I don’t have the energy to go into details of his day yesterday, but if you could guess, it wasn’t great.

We had some hope during the day yesterday we wouldn’t have to change our flight, but by the evening, we knew we would be staying longer. Hopefully not too much longer.

We’ll find out soon if he’ll need surgery or not.

I’m not really sure what to ask prayer for. Whatever will make Sam feel better the quickest and get us home the soonest. And so much more.

Sam Strong!

Faith Over Fear!

We Have an Answer!!!!!

X-rays showed Sam’s j-tube (the part of his feeding tube that is threaded into his small intestines) is retracted and coiled up into his stomach. As you might imagine, this is very painful. Poor buddy. No wonder why he’s in so much pain and throws up every fifteen to thirty minutes.

At home, radiology does the feeding tube procedure, but it sounds like surgery is the specialty who will do it here. Pray for a quick and smooth procedure tomorrow morning. He gets his feeding tube changed every two to three months and it’s a pretty painful experience for him. This procedure is why he has so much PTSD when he sees an x-ray table. He just had it changed two weeks ago. Poor guy. Hopefully the little bit of morphine he’s on will help.

I feel terrible for him, but this is literally the best possible, fixable answer. This poor guy can barely catch a break. He is the strongest, toughest little boy.

Pray both Sam and I will get some restful sleep tonight and this will be the only complication. We want to hopefully get out of here tomorrow and be able to catch our flight home on Tuesday!

Sam Strong!

Faith Over Fear!

Rough Go

He had a few moments of slight smiles yesterday, but overall, Sam has been pretty miserable. He threw up and retched about every half hour throughout the night, if not more. It will be a miracle if this surgery works. And it WON’T be Sam’s first miracle!!!!!

The doctors said if he can get the nausea and vomiting under control, we can leave later today. This hospital is awful nice and they do things very well, but it’s not home. I don’t like hospital stays, but when we’re home, I know the system and almost everyone knows Sam. There’s a lot of comfort in that.

Please pray Sam will not have anymore nausea, vomiting, and for no other complications. Let’s get this sweet boy out of here!

Sam Strong!

Faith Over Fear!

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.

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 yourself together, 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.

The Grant Family

To be continued…

Our Car At Home

The next morning Sean had a voicemail left from the middle of the night. Hmmmm, that’s weird.

As he listened to the voicemail, his facial expressions told me something was not right. Oh boy, now what?!

The call was from the sheriffs department at home. The officer explained Sean’s car was in the impound. Say what?! Overnight, the police found it crashed and deserted in a snow bank on the side of the road. They had to impound our car because it was blocking traffic. Is this really happening?!

Yep, it was really happening. We were in Florida, what could we do?! We did what we could by calling the police and our insurance company explaining we were in Florida. We tried not to think about it after that. We’ll deal with it when we get home. And, we still are. Thank you Lord for insurance!

We weren’t going to let that stop us from enjoying this beautiful day.

To be continued…