Today Was a Good Day
Day one post-op was not great, but anyone who has a major surgery would not be great on the first day. He had a really rough first night. Sleep was at a bare minimum for both of us. He needed a lot of suctioning (his trach) and had a lot of retching (throwing up).
Day two was rough with some good sleep periods, but he was miserable when he was awake. Overall, he slept good that night. Progress.
Day three he showed a glimpse of hope in the morning. He melted some hearts with a few smiles. He went downhill fast later in the morning. At first, it looked like a curve ball, but then as I payed more attention to his symptoms, a light bulb went off. Intussusception. Ugh. Poor guy. I prayed the intussusception would resolve on its own so we wouldn’t have a real curveball.
We tried so hard to stay away from the morphine, but by late afternoon I caved per his nurse’s gentle nudge of encouragement that’s it’s probably a good idea. It was a good idea. It definitely helped. Intussusception comes and goes in waves and is apparently very painful. Your small intestines are not suppose to telescope in and out of each other. The only thing to do is wait and hope it resolves on its own. With a few more doses of morphine that day and throughout the night, he slept really well. It was looking like Sam would hit this curveball out of the park.
Day four, he woke up happy and sat up for the first time! He was playful in bed the whole morning and had fun with music therapy. Music therapy. It gets my heart every time. She started singing the “Hello” song and the tears dripped down my face like a faucet. I couldn’t control them if I tried. It’s the same song I’ve heard the last six years from several different music therapists. Moments of Sam’s little life flash through my mind like a trailer for a movie. I feel every emotion possible in a matter of seconds so deep in my soul, I can’t control the lump in my throat and the tears that follow. After it’s over, they are good tears, the ones that have to happen once in a while to keep me going. I’m thankful for a God who meets me right where I am at.
In the afternoon Sam got a break from all his cords. I decided to try get him out of bed. He didn’t want to. He sat on my legs as I knelt down to the floor, but once I stood up with him and held his hand, he had an ear to ear smile and walked to the door. He played in the hospital playroom for about an hour before he tuckered out. My heart was full and I know his was too. He fell asleep early tonight. Overall, it was a great day.
Here comes the curveball. Sigh. It’s 9:30pm and the nurse is about to start his TPN. I take an overdue shower while there is someone in the room with him. I step out of the bathroom and a few moments later I hear, “It won’t flush.” Crud. A PICC line that won’t flush is not a great thing to hear. Now we hope we can clear the line that is likely blocked by a formed blood clot. The good thing is that it’s highly unlikely we won’t be able to clear the line.
So, prayers the PICC line will clear and flush easily.
I believe it will and I’m also very hopeful Sam will sleep good tonight and we will get to go home tomorrow.
Sam Strong
Faith Over Fear
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
More on Cincinnati and Update
King Sean and Prince Sam
Before Sam’s surgery, we had some fun at the Cincinnati Zoo again. Sean was nervous about Sam and being around all the people, but it was nice to be able to do something “normal” with Sam since we had to have him in a bubble the month prior. Doing normal things with Sam always tugs on my mamma heart. Sam was more interested in trying to pull leaves off trees, and snatching my sunglasses off my face to throw in the ostrich cages. And, of course, his nose (filter for his trach) went flying too. So, if you go to the Cincinnati Zoo anytime soon and see the ostriches wearing sunglasses...
Okay, this gorilla is pretty cool.
My dad is way cooler than that hippo behind me.
For those of you who don't know sign language, Sam is signing "Daddy". He was telling us the lion was a daddy lion.
Our hotel didn't have a bathtub so we had to improvise. Sam thought taking a bath in the kitchen sink was great. It was a lot less stressful for Sean and I too, because Sam LOVES the water. If he was able, I think he would have his head under the water all the time. He has no idea what would happed if he completely submerged himself in water. He is very brave around water and is constantly trying to put in head under, which makes bath time and water in general, pretty stressful for us. My heart skips a beat when I think of Sam without a trach and the day he can completely submerge himself in water. I think he will be a fish. Oh happy day.
Cleaning my feeding tube.
When we knew we had to cancel our flight home because Sam was misbehaving, I instantly started looking for one way flights. It was not looking good.
We found out on a Wednesday evening, Sam would be discharged the next morning. The soonest flight out I could find was on Friday morning at $835 a piece! Not happening. The flights for the following week weren’t much better and we did not want to be stuck in Cincinnati any longer. Will and Abby were perfectly fine at home with my niece holding down the fort. I think they would have been happy if we were gone longer.
We decided to keep the rental car and drive home. We quickly packed Sean's things at Ronald McDonald House (RMH) after Sam discharged, but couldn't pass up the free toy from RMH for Sam. Of all the toys, he picked the doctor set.
Sean and I had to play a little Tetris to make everything fit in the SUV, but we did it. We were definitely homesick.
Sam does not travel lightly. And there were still six boxes waiting at the hotel for him!
Two days later, we made it home. Sam did surprisingly well with two full days of driving in a car. Sean and I were exhausted and very happy to be home. Sam was happy to see his siblings.
It has been almost six weeks since Sam's surgery. We wait one more week to find out if the surgery worked or not. When I asked the doctor in Cincinnati if he thought it was a zero percent chance the surgery worked because of what happened, his response was, “The only person who knows that, is not in the room right now. We just have to wait and see.” Hmmmmm. Faith over fear, Jamie.
Sam’s ENT trained under the ENT who did the surgery in Cincinnati. Thankfully, we don’t have to travel back to Cincinnati for Sam’s bronchoscopy to get the news. Our expectations are low and our hopes are high for the news. It’s yet another sedation for Sam. Prayers everything goes smoothly next Friday.
Like my friend said, ”I figure no news is good news.” Yes, since we’ve been home, Sam has been doing great. We’re still moving slowly on his feedings, but he started at twenty-four hours a day six weeks ago, and is now down to eleven hours a day! And barely any retching! Progress!
He has had zero signs of intussusception. We’ve all questioned if the intussusception was happening longer than we think. It’s a hard thing to catch because they can only see it on ultrasound or x-ray when it’s happening. It’s likely the other feeding tube (j-tube) is what was causing it, which then makes its less likely to happen again. Continued prayers Sam will not get intussusception again.
And BIG Happy Birthday to my sweet boy today!!!!! We've kept you alive for six years now! Everyday we get with you is a blessing we didn’t think we would get from day one. I’m incredibly thankful we live where we do, knowing in many other places, you would not have made it past the first day. Keep doing what you do best, by making other hearts a little bigger.
Faith Over Fear!
Sam Strong!
Looking Up
As of right now, Sam will not need surgery. Thank you Lord!
The surgeons were pretty convinced yesterday morning Sam would need surgery based off the six ultrasounds he had throughout the night on Sunday. As they came and pressed on his tummy throughout the day yesterday and rested his belly, they became less convinced Sam would need surgery.
Today we started some Pedialyte at a very slow rate in his g-tube. Those of you who know Sam, you read right, I said his g-tube, not his j-tube. After the misery of the getting the j-tube inserted in radiology (not surgery here), surgery pulled his j-tube that evening possibly thinking it was instigating the intussusception. For a few reasons, this could be a disaster or a blessing in disguise.
One reason is the j-tube has often kept us out of the hospital when he gets sick and is not tolerating Pedialyte or formula in his g-tube (stomach). Another reason is that he is currently dependent on his j-tube for half of his daily feedings. The blessing would be, he will tolerate ALL his feedings in his g-tube and not need the j-tube. We would absolutely love only a g-tube.
The surgeon and nurse laughed at me in the middle of the night when the j-tube was pulled and the g-tube was put in when I said, ”Oh it’s so beautiful.” If you know anything about feeding tubes, you can understand my excitement. If you know Sam medically, you can understand my apprehension. It’s going to be a blessing in disguise.
The best news is Sam woke up this morning clearly feeling much better. He’s sitting up and even giving quite a few smiles. He hasn’t made any sounds yet, but I don’t think we’re far from that.
A night and day difference from yesterday!
The hotel we were staying at did not have anymore availability, but we were able to get a room at the Ronald McDonald House here and we able to cancel our flight with no fees.
I’d be lying if I told this is easy, but you know me, I like to stay focussed on the perks. It’s much better for the soul. I also believe we are in the best place possible. Cincinnati Children’s is internationally known for caring for kids with airway and esophageal disorders. It doesn’t take long having a kid like Sam to see that.
Pray Sam will tolerate his feeds, the intussusception has fixed itself, it will not recur, and for NO MORE SURPRISES!
Thank you for walking alongside us in this journey, the continued prayers, and the encouragement. They both go a long way.
Sam Strong!
Faith Over Fear!
Another Complication
Sam has intussusception again. I don’t have the energy to go into details of his day yesterday, but if you could guess, it wasn’t great.
We had some hope during the day yesterday we wouldn’t have to change our flight, but by the evening, we knew we would be staying longer. Hopefully not too much longer.
We’ll find out soon if he’ll need surgery or not.
I’m not really sure what to ask prayer for. Whatever will make Sam feel better the quickest and get us home the soonest. And so much more.
Sam Strong!
Faith Over Fear!
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!
Admitted Again
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!
Sam Strong!
Faith Over Fear!