The emotions attached to the first day of school were extra overwhelming this year. My daughter started high school, my middle son is now a sophomore in high school, and Sam started first grade. My babies are growing up way too fast.
Six years ago, I planned to come home from the hospital to get my other three kids off to their first day of school. I didn’t make it home from the hospital very often and was excited to see them off on their first day.
During the middle of the night, Sam went into cardiac arrest for a second time. Needless to say, when my baby died in the middle of the night, for me, leaving was not an option. There are many times this past six years I wish I could be in two different places at a time. Or three. Or four.
It slightly haunts me sometimes when I think of the nurse who told me at one point during Sam’s seven month hospital stay, “Jamie, you need to go home, Sam will not remember this, but your other kids will.” She was right and it was said out love.
I have also had several nurses tell me, “Sam would not be here today if it wasn’t for me being by his side all the time.” Talk about having to wrestle with what the best thing to do is. I still struggle with this every one in a while, but it’s neither here, nor there. I cannot change the past. We did what we thought was best for our kids at the time. That is all we can do.
It was an emotional day, but most of my tears were happy ones.
We’re back to that resilience thing I wrote about quite some time ago. Click here to read how I feel about resilience. I know it could be SO much worse, and once in a while when things are harder, my thoughts go to, “but God”, don’t we have enough on our plate? Why does it seem when life throws you a curve ball, more keep coming?
If you have more than one child, my guess is you love each of them equally, and you likely express your love differently based on their needs. Each of our kids are special and unique. No one else in the world can offer what he or she can. I believe this with all of my heart. We do our very best to give each of our children what we think they need from us emotionally, socially, physically, mentally, academically, etc. You get the point. We do our best to raise virtuous adults.
Sometimes circumstances and/or nature gets in the way.
We do very best, and that is all we have. At times, our very best, doesn’t seem or feel like enough, and during a trauma there is only so much we can do, even if we want to give more, circumstances can stop us. We carry the weight of our children’s bad choices on our shoulders whether they are six or twenty-one.
Sometimes, no matter what we do or say, I believe nature will take over nurture and our children can take a destructive path. It comes to a point where we have to set boundaries, and they have to figure it out on their own.
For parents and loved ones, watching the destruction, makes for heartbreak, anger, pain, frustration, sadness, despair, etc. It’s a road no parent foresees for their child. We can try all the things the experts say to do, but those things don’t always work. It’s a road you think can’t happen to you, because you are good parents.
We fight for all of our children. We love each of them equally and want them to have happy, successful lives. They grow up and make decisions of their own. How we set our boundaries doesn’t mean we love them any less. We can set boundaries and love our kids at the same time. Boundaries are an important part to healthy mental health and love for our children.
I have to admit, most of us in this family have handled adversity like rock stars. Daily, I hope, pray, and believe, someday I can tell this part of our story. It WILL BE a story that ends with restoration, meaning better than it was before.
We fight for all of our children and sometimes that means letting go of what we cannot fix or change. At the end of the day, there is very little we have control over and we have to rely on hope. Hope that the old will be made new. Hope that faith will prevail over our fears. Hope that restoration will come.
We went into Sam’s procedure with high hopes and low expectations. After what happened in Cincinnati, the odds of the surgery working were not in Sam’s favor. Here’s my analogy. Let’s say you get five sutures (stitches) in your airway. Within minutes of waking up after surgery, you start throwing up every fifteen minutes. The pressure from throwing up is most likely going break open all of the fresh sutures that were just placed. It makes sense that everyone had very low expectations, that few, if any sutures would stick.
When Sam’s ENT came to talk to us before the procedure, he told us he spoke with the ENT who did the surgery in Cincinnati and heard what happened. I told him, my hope and dream is that at least two sutures stuck. High hopes, low expectations. He responded, ”We’ll see.”
We’re getting close to seventy times I’ve had to watch my little boy get put under sedation. At this point, we have a pretty solid routine. We see all the staff who need to meet with Sam and I before surgery, they get vitals, we go over ALL his meds and records with the nurse for the umpteenth time, I make sure the right labs will be drawn so Sam doesn’t have to get poked more, sign all the paperwork, make sure Sam gets Versed, keep snuggling my poor, very stressed out little boy, and then give him one last kiss before they roll him back to the OR. I take a deep breath, say a short prayer, and the nurse (or Sean, depending on who’s with me) and I walk to the cafeteria to get something to eat.
We go back to the waiting room, eat, and depending the the procedure, wait. This time, I look at Sam’s nurse and start praying. Let’s note, I am not always good about praying before meals. “Lord, bless our food and I pray two of the sutures will stick. It would be really great if three of them stick. And if your having a really good day, please make all five of them stick.” Sam’s nurse responded, “Amen.” We started eating our food.
I think I forgot Sam’s previous procedures usually have two to three doctors doing something or a surgery that takes longer, because I had only two bites and Sam’s doctor came into the room. He said, “Well…two of the sutures stuck. And actually, three of the sutures stuck. And actually, all five sutures are still in tact.” Instant tears from me and Sam’s nurse. I had the same feeling in my heart, mind, and soul on the day the doctors told me they were able to attach Sam’s esophagus. Pure shock. An absolute true miracle. Thank you Jesus. Sam’s ENT had already called the ENT in Cincinnati to let him know, and his response was, “Wow.” Enough said.
Sam always has to throw a curve ball somehow. We were cleared to leave at about 12:30pm. This would have been record timing for a procedure with Sam. We started packing things up and the nurse came into the room. “Sorry, I can’t let you leave, his potassium is 8.3.” What does that mean?! Apparently, that is heart attack level. If I’m being honest, I had zero worry. Sam. They checked it again right away. It did go down to 7.4, but that is still very high. Lab came to draw blood from his other arm. Even after being put under, it still took three of us to hold him still. Poor buddy. The nurse laughed at me when I put the call light on to show her the new results on my phone. “4.1”, I told her, “We can leave, right!?” “Yes, let’s get you guys out of here!”, she said.
We have been waiting for this since Sam was two months old. He had the surgery done twice here and it failed, likely because of his retching.
We really needed a big win. Thank you Lord.
This is the first MAJOR step in being able to remove Sam’s trach (breathing tube). LIFE CHANGING. Sam still has A LOT to overcome, but this surgery is a HUGE win. He will have a swallow study and see his GI (gastroenterology), ENT, and pulmonology. And then hopefully, he can start feeding therapy!!!!!!
Thank you for your continued prayers. I truly believe they have brought Sam to where he is today.
FAITH OVER FEAR
Psalm 27:14 says, “Wait on the Lord; Be of good courage, And He shall strengthen your heart; Wait, I say, on the Lord!” I find so much peace in this. When I wait on Him, it’s not a waste of time. It might be incredibly hard, but it’s not a waste of time. The more I wait on Him and not me or others, the more He seems strengthen my heart.
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.
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.
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.
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!
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 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.