Sam will go to surgery again tomorrow (Monday). His GI surgeon and a GI doctor will stretch his esophagus again for the twenti somethingth time. His ENT will look to see if the sutures stayed intact on the bottom part of his Laryngeal Cleft, or the hole in his airway. His ENT has decided only to look and see if the surgery he did last month worked or not. Both Sam’s ENT and GI surgeons are going into this, hoping to formulate a plan based on their findings.
There are SO MANY things I could worry about with Sam. Of course, I travel down that path sometimes, but it gets me nowhere except stressed and fearful. There is SO little we can control. I know we are doing everything in our control, the rest is out of our hands. We choose to let go, and let God. When that truly happens, I can tell you from experience, the stress and fear factor quickly go away.
Pray the surgery done last month on Sam’s airway was successful. Pray for Sam’s surgeons, anesthesiologist, and anyone else caring for him. Pray Sam will recover quickly, his docs will be able to formulate a good plan, and we will get some answers. Pray for the rest of us too. I joke, Sam recovers faster than I do when he has surgery. As you can imagine, surgery days are pretty mentally and emotionally exhausting. As always, thank you for keeping us and our Superman Sam in your prayers.
Well, it’s been a bit since my last post. If you can imagine, life gets a little busy juggling a complex child and three other kids. Not too long ago, someone bought me a journal. The cover reads, “There are no ordinary days.” So true, for all of us, really. Although, if I’m being completely honest, I can think of countless ordinary days before Sam. When I talk about my ordinary days to my close people, they would tell you my days are not so ordinary. I’m okay with that. We usually laugh and I say, “You can’t make this stuff up!” Laughter, for sure, is the best medicine. Thank you to my besties for listening about my not so ordinary days. I couldn’t do this journey without you.
We did end up having to spend Sam’s anniversary in the hospital, but thankfully we did not get admitted. It couldn’t have been more than an hour after I posted my last post, we were instructed to take Sam in. Bummer. He was a pretty sick little guy. Poor buddy. Although, it was the fastest trip to the Children’s ER we’ve ever had. Like any of our ER visits, they did blood work, a trach culture, and x-rays. Round trip, it was only five hours. That’s record time! The nurse in the ER congratulated Sam on his anniversary. We all laughed, agreeing he had to pay a visit to his alma mater for his anniversary. Laughter, the best medicine.
Okay, so how many of you Googled that one? Pseudomonas? It is the type of infection or type of tracheitis Sam had growing on his trach culture. It’s not the first time Sam’s had it. It’s a scary one and we do everything on our part to keep it away from Sam, but unfortunately there’s only so much we can do. It’s not something us normal people have to worry about. You’d have to have an artificial airway, like Sam, or an open burn wound, or be in a hospital hooked up to a bunch of stuff. Thankfully, we were able to treat it this time and once we knew what it was, we were able to treat it quickly.
I’d like to say things have been going really well for Sam since then. Let’s just say, we’ve had an eventful February. Sam’s has some GI stuff going on. Pray we can get it figured out and get him back on track, or at least back on “his” track.
There’s no doubt, this kid keeps all of us on our toes!
Why is getting sick such a big deal for the complex child? Why does the fear of getting a simple cold bring slight panic into the hearts of families and caretakers of a complex child? When Sam gets sick, he gets so much more sick than a healthy child. A little cold makes for several more added nebulizers throughout the day, which is on top of the daily nebulizers he already takes. A cold can easily turn into pneumonia. A cold can quickly turn into another hospital stay. Don’t even get me started on the flu. Ugh. That opens a whole different can of scary worms in our world.
Why do doctors want their complex patients basically quarantined at home especially during cold and flu season? They are well aware of the repercussions.
Why do the little germs, we barely gave a second thought about with my three other kids, seem SO MUCH BIGGER to us now? In a sense, they are much bigger for Sam, not literally, but figuratively. When my other kids got/get sick we might go to the clinic. Sam skips the clinic or urgent care and goes straight to the hospital. There are no in between spots for him.
Around the holidays, why are there more complex kiddos in the hospital? We get more brave during the holidays. We want to feel like a normal family.
Although it looks like I’m a complete freak in my writing. I am actually able to keep my anxious thoughts fairly under control. There is so little we can control. We can’t control what happens to us, but we can control how we respond. We do what we can and follow our doctors orders. I trust in a God who’s purpose is only good, and I believe in a God who wants me to give Him all my worries and concerns. I try my darndest to do just that.
I am also incredibly thankful for a family and friends who are understanding of Sam and his complexities. I’ve started to meet people who live in our world and many can’t say the same. Our family and friends stay away when they are feeling under the weather and sanitize and/or wash their hands before they touch Sam. Again, there’s only so much we can control. It’s important for Sam to be around his family and friends. I know we all cherish these few and far between times. Sam loves to be around people. He’s become a little show off and loves when everyone has their eyes on him.
We made it through the holidays without Sam getting sick, which is just short of a miracle with how brave we were. We spent Christmas with family, and we had lots of family staying at our house from out of town. I’m pretty sure they would tell you I did a good job at keeping my anxious thoughts under control. Those of you who know me, know I am far from a Nervous Nelly, but man, Sam has really made this Nelly character come out in me once in a while. I’m human, right?! Sam is healthy right now and has been for over a month. That’s what we choose to keep our thoughts on. And he’s going to stay that way!
Yes, Sam has Down Syndrome. It always throws me a little off guard when people think it is a thing for us. I don’t know, maybe, if it was Sam’s only diagnosis, it would have been. It is not Sam’s only diagnosis. Sam is what the medical world calls a medically complex child. When your child fights for their life, a diagnosis like Down Syndrome is not what you think about. When your child is in a medically induced coma for 34 days, you don’t care about Down Syndrome. When you spend months in the hospital, Down Syndrome is no big deal. When your child has multiple surgeries, Down Syndrome is not a concern. When you bring your very medically complex child home for the first time, you are not thinking about Down Syndrome. When your child is put under one to two times a month to get his esophagus stretched, Down Syndrome is not important. When you make weekly, sometimes more, trips to the hospital, it’s still not a thing. Yes, maybe it was initially, for a split second, but I don’t really remember that part very much at all. I just wanted and still want my baby alive and healthy. When you have a medically complex child, that is your focus one hundred percent of the time. Down the road, when hospital stays, surgeries, the fear of Sam getting a cold, etc. are a thing of the past, I’m guessing then, Down Syndrome might be a thing for us, but maybe not, I don’t know. Until then, and always, he is just just our baby who needs to be loved and kept as healthy as possible.
If you are someone who thought Down Syndrome was a thing for us and you feel bad about it, please don’t! It has weighed on my heart, and I want people to be aware. It makes sense to me. Down Syndrome is something more people can relate to. Not many people have heard of Long Gap Esophageal Atresia and even less have heard of a Type II Laryngeal Cleft. When you have a medically complex child, Down Syndrome is not your focus. This doesn’t mean we want to pretend Sam does not have Down Syndrome, quite the contrary. This also doesn’t mean people can’t ask questions or can’t talk about it with us. It’s only a glimpse into the heart of a mama with a medically complex child, who’s sharing how Down Syndrome is not on her radar right now.
A new, sweet friend of mine, recently posted a blog related to a mission she is not only trying to, but is beginning to make waves in a sadly still biased world. In order for you to understand my feelings, you have to take a minute and read her post first…
I honestly do not remember much about Sam’s Down Syndrome diagnosis. After reading Carissa’s post, I drilled Sean with many questions, about what he remembers, while also trying to piece together what I remember.
What Sean remembers…
…when the ambulance came to take him and Sam, not long after Sam was born, the Nurse Practitioner from Children’s told him not to worry and that this baby would be the light of his life. She told him about her daughter who had Down Syndrome and how she was the joy of her life and so many others.
Message…Sam’s life is a gift.
What I remember…
…a neonatologist from Children’s calling me at Mercy Hospital the day after Sam was born. He told me what, at the time, they thought was wrong with Sam. He also said, “All the nurses are telling me he has Down Syndrome. I don’t see it, but the nurses are always right. We will do the blood test and we will see.”
Message…Sam may have Down Syndrome, which is neither good, nor bad, just fact.
What we both remember…
…after Sam’s dramatic first time appearance into the real world, someone asking if we knew he had Down Syndrome.
Message…Sam may have a diagnosis the family is not aware of. Again, neither good, nor bad, just fact.
…when we first received Sam’s blood work confirming his diagnosis of Down Syndrome. Although, neither of us needed blood work to confirm it. This was really hard for both of us to remember. We think we pieced together the neonatologist who delivered the news. That’s about all we can remember. I can tell you, I know, this same neonatologist views Sam’s life as a gift, as she chose to feature him on the MN Neonatal Foundation’s (Click here) website.
Message…Sam’s life is a gift.
Not once did any medical personnel make us feel Sam’s diagnosis of Down Syndrome was a hopeless or bad thing. Some of what we remember was neither good, nor bad, just fact. Never did we feel we had to convince anyone Sam’s life is a gift.
I’m sorry all your hopes and dreams are over for your child. What if we would have heard these same words during Sam’s often hopeless looking situation? Would we have the same feelings as we did when I wrote about Sam having Down Syndrome so long ago? I think so, but they probably would have been stronger and/or more intense. Would it have made our already hard journey feel heavier? I believe so. If we felt we had to prove Sam’s life is a gift, would Down Syndrome have more of a focus for us? I don’t know, but maybe. I can’t imagine going through what we have with Sam, while also feeling like we had to convince people Sam’s life is a gift. My heart hurts just thinking about it.
I am so thankful we had the experience we did, but my heart aches for those who will receive a message that says their child’s life is not a gift. Can you imagine how you would feel if someone made you think your child’s life was not worth living?
It’s 2…0…1…8! The fact that Down Syndrome is still presented in a bias and hopeless way, boggles my mind. I have yet to meet a family who loves their child less because of his/her diagnosis. If anything, that child has taught them to love deeper and more passionately than they ever have before.
I tear up when I think of how many lives have already been touched by Sam. And he’s only two! All of my hopes and dreams are not over for my child. They are just beginning. Every tiny hurdle he makes is a hope and dream we have for him that has been fulfilled. In all reality, he has already surpassed any hope and dream we ever had for him. He brings so much joy into our life and so many others. One smile from Sam and your heart is full. Our Sam has inspired me to do things I never imagined I would. All of our hearts are bigger because of him.
Well, I guess I was right to wonder how a swallow study is done on a kid who doesn’t eat or drink anything by mouth. My question lead speech, the specialty who performs a swallow study in combination with radiology, to talk with Sam’s ENT. They decided we have to do feeding therapy before they perform the swallow study. Bummer, but it’s okay.
Yesterday was not a good day in our house. Let’s just say, the cancelling of the swallow study was not the only, nor the worst, of our bad news for the day. When it rains it, it pours, BUT there will be a rainbow. And, like I have said in the past, it could be so much worse.
Again, don’t just keep Sam in your prayers. Each time you pray for our Superman Sam, pray for the hearts of me, Sean, Will, Abby, and Ryan. My kids lives have been turned upside down over the past two years, and to say all of this hasn’t affected them, would be silly. Someday, I will write about the other half of our story, but for now, I can only ask for prayers.
Thank you for continuing to follow Sam’s story. I’m so thankful to the nurse at Children’s who encouraged me, so long ago, to start a CaringBridge site. You have no idea how much therapy I get from writing and reading previous posts and comments. I find myself going back and reading things I would have never remembered had I not journaled Sam’s story. Sometimes, if I’m having a bad day, I read past comments and my heart smiles again. Thank you for your encouraging words. They go a long way and are not forgotten.
After over thirty times of sending my sweet little boy off to surgery, I am still nervous to do it again. Tomorrow at 1:30PM, they will attempt to close the hole in Sam’s airway (trachea). We’ve now waited for two years to do this surgery. As with any surgery, there are risks involved, but some have many more, like the one one Sam will be having tomorrow. A tracheotomy has many more risks. The surgery is what is best for Sam in the long run. Of the two surgeons performing the surgery, the main surgeon has only done this particular surgery ten times and this will be a first time for the other surgeon. That being said, there are a few more jitters in my heart today.
You can worry or trust God, but you can’t do both. I heard this on the radio the other day. I am choosing to trust.
Pray the surgery goes well. Pray for the surgeons hands and all the other medical staff who will be involved. Pray Sam doesn’t throw any curve balls, as he’s unfortunately famous for. Pray for a smooth and quick recovery. Pray for our hearts to trust God and not worry.
We’ve had a few good days! Thank you Lord! And thank you for the prayers. This little boy sure knows how to keep all of us on our toes! I thought for sure his surgeon would cancel surgery, but, thankfully, I was wrong. As of now, surgery is still scheduled for Monday! I say that, with a bit of fear and excitement all in one.
It’s been a long week around here. Sam getting sick is no comparison to my other kids getting sick. We don’t know what we would do without our home care nurses. Thank you so much to all of you. It’s because of you we get to keep Sam at home.
Also, another shout out to his care team. They are the best. As you can imagine, Sam has a pretty big care team. Depending on what’s going on with him, we call the appropriate specialty. Often, we call a few different specialties, because there are so many things going on. Each different specialty works together with the other. Communication between Sam’s care team is one, in my opinion, of the many reasons Sam is still here today.
Remember the doctorwho had the bad reviews? He is the main surgeon who will be doing Sam’s upcoming surgery. When we called his care team to let him know what had been going on with Sam, they told me a few times, he wouldn’t get back to me until the next day, as he was going to be in surgery all day. Makes sense. Guess what? He might have been in surgery all day, but he called me personally that evening. Any of you who are in the medical world or have had surgery, know, surgeons often go through their nurses. They don’t generally call their patients personally. Every time, we have had concern with Sam, he calls me personally. Yet another reason, I get a bit fired up when I see the bad “Google” reviews on him. : )
We had to cancel a lot of appointments for Sam this week, but we didn’t end up having to cancel his haircut. We are so fortunate to find someone who will come to our house to cut his hair.
Well, Sam has officially come down with something. He’s been fighting something for a few weeks, but seemed to be doing it on his own, for the most part. I guess not. We are only nine days away from surgery. Unless he gets better quickly, they will likely cancel surgery. Please pray he can fight this off without going to the hospital. Thankfully he’s not on oxygen, but we are bordering having to start.
I recalled a post I wrote almost exactly a year ago. I changed a few things, but the feelings haven’t changed much…
Unfortunately, fear creeps in pretty quickly with Sam when he gets a fever. When my other three kids were little and they spiked a fever, fear wasn’t even a thought for me. Usually with a little TLC and some ibuprofen, or maybe a quick trip to the clinic to get them on an antibiotic, they were fine eventually. Sam is a whole other story.
It’s not just a fever for Sam. It’s even closer monitoring than we already do. It’s keeping an extra close eye on his sats and heart rate. It’s adding several more nebulizer treatments throughout the day. It’s canceling plans, again. It’s doing everything we can to keep him out of the hospital, but doing that can be scary too. It’s hoping whatever doctors are on call know Sam and his story. Thankfully, most of them do. It’s double checking the oxygen tank and Ambu bag. It’s not wanting his nurse to leave at 7:00. It’s staying up most of the night on high alert. It’s praying earnestly for God to heal whatever is going on with Sam and to calm my nerves. It’s praying God will help us remember all we learned during our Tracheostomy and Infant CPR class so long ago in the hospital, in case things go south. It’s so much more, but overall, it’s faith over fear.
I recently realized I hadn’t given an update on all Sam’s procedures done at the beginning of June. No news is good news, right?! Pretty much…
As we suspected, Sam’s MRI was mostly normal. We have nothing to worry about. His pediatrician was a little worried about his head size only being in the less than one percentile. I wasn’t worried, his head fits his tiny body. The MRI only proved that.
All of Sam’s biopsies came back negative. Yay! They did find some gastric tissue in his esophagus, but that isn’t anything they are worried about. It most likely happened at the anastomosis, or in layman’s terms, when they connected his esophagus to his stomach way back when.
Both Sam’s GI surgeon and GI doctor were stumped on what was going on with him. It didn’t seem right dilating Sam would solve the retching issues for a little while. His GI doctor suggested Sam might have Cyclic Vomiting Syndrome as it seemed to be the only thing that would make sense at this point. It still doesn’t make sense why dilating his esophagus would seem to solve the problem the last few times, but for whatever reason it did. Bottom line, his GI surgeon knew that didn’t sit right with him so he consulted Sam’s GI doctor. Everyone is doing what they can, when they can. Trust me, I know they lose sleep over Sam.
After the day of unsolved mysteries, they decided to do two things. They started him on a new med that would treat the Cyclic Vomiting Syndrome, and also put in an order to do testing while he’s having the obnoxious episodes of retching. We are way past the time he would have terrible days of non-stop retching so the new med seems to have solved the problem. This time, like so many others, goes to show what happens when doctors collaborate. We are so blessed to have the care team Sam has.
Sam has been doing awesome. Now, knock on wood. His GI surgeon and ENT surgeon talked and decided they are very happy Sam is doing so well, but they would both like to see him do really well for two to four months before we talk about scheduling his next big surgery. That means Sam has to stay healthy along with very little retching episodes until the end of August. So far, so good.
We’ve never gone longer than a month without something going wrong with Sam. It’s been over two months since Sam’s had any issues! It’s kind of a weird feeling. There’s a part of me sitting on edge waiting for the next thing. And the other part is rejoicing and hoping/praying this will continue. Pray it does!
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