Is This For Real?!

A post I wrote in August of 2017…

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’m sorry all your hopes and dreams are over for your child. (Click here)

Is this for real?!

Appalling, right?!

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.

My Life is a Gift
My Life is a Gift

 

Swallow Study Cancelled

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. 

Short Story on the Big Surgery Today

Surgery is done.

We are home.

We’ll find out in four weeks if it worked or not.

Besides a few, quick scary moments, Sam is doing awesome!

We are very tired, and even more, mentally drained.

We can’t thank you enough for your prayers and meals!

That’s the short story. The longer version is coming soon…

Sam Strong!

Faith Over Fear!

Surgery Jitters

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.

Sam Strong!

Faith Over Fear!

 

Sam Update

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 doctor who 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.

Message_1540429133445 Sam Strong!

 

Prayers for Sam

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.

Sam Update

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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We Made It To Two!

On June 30th, we celebrated a little boy who, on many occasions, should not be here today. A little boy who, one of his doctors once said, he was a work of a whole lot of science and a lot of Art too. A little boy who continues to amaze his medical team, therapists, and so many others. A little boy, who despite his constant medical issues, is almost always smiling.

It’s been two years since our little Sam decided to ruffle things up a bit. Never would we have thought this would be our story.

About a year before Sam was born, I followed a CaringBridge for precious twins born way too early. They spent their first four, bumpy months of life in the NICU and ICC at Children’s. I cried so many sad and happy tears for those sweet babies and family as I would read the cry of that mama’s heart. She was fighting for their lives and sometimes, hope was her only option. I would think, “How does she do it? I can’t even imagine.” Not long after those miracle twins went home, I was the mama who’s only choice was to stay strong and have hope.

Today and everyday, we celebrate life. Oh, how precious it is. Each and everyday is a gift. The life of a complex child can be a nonstop feeling of gratitude and fear all in one. Oh, the things I took for granted with my other three kids, I didn’t even realize I was. Now, I’m grateful for things I really had no idea existed. We are grateful for…

…a day of only a few episodes of retching.

…somewhat normal poop.

…no fevers.

…less secretions.

…clear secretions.

…a feeding tube.

…a feeding tube that doesn’t come out.

…a night of less beeping.

…staying out of the hospital.

…stoma sites that stay healthy.

…a tracheostomy.

…homecare nurses.

…doctors.

…pulse oximeters.

…bottom line, LIFE.

As you can probably guess, we’re pretty ecstatic we made it to two! I can’t imagine we won’t have these same feelings each birthday we get to celebrate with Sam.

Every LIFE is a gift. Sometimes, it takes an incredibly close call, or several in Sam’s case, to help us truly understand how precious life is. I am grateful for this gift.

Happy 2nd birthday to our Superman Sam! Thank you for showing me, first hand, how precious life can be.

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Sam’s Procedures

20180604_112918

Well, it was another long day at what feels like our second home sometimes, the hospital. Although, we really didn’t get any answers, we all feel we have a good plan in place.

Sam’s ENT surgeon confirmed Sam still has a Type II Laryngeal Cleft. It’s a little deeper (worse) than he remembered, but that doesn’t mean the cleft isn’t fixable. However, he also made it very clear to us, until Sam’s GI stuff gets figured out, he will continue to stay in the background. He also up-sized Sam’s trach, now that he’s getting to be a big boy. This, and the bronchoscopy, was probably the cause of the more than normal blood he was coughing up after.

As far as his GI stuff is concerned, everyone is still puzzled. They took biopsies of his esophagus, stomach, and small intestines. This is to rule out any underlying issues. Until we hear more about the biopsy results, the plan is to wait and see if the retching gets bad again and then do some other testing. It’s never great to puzzle geniuses, but WHEN they figure out what’s going on, knowing Sam could help other kiddos, makes me happy.

We will hear from Sam’s pediatrician when the MRI results come back. Again, we feel positive the results will be normal.

As you can imagine, or might know, these days are very mentally draining. It starts with being prepared. For how many times I have had to do this, you would think I would remember to buy Pedialyte beforehand. I can’t tell you how many times I have had to drive to the store at nine o’clock at night to get the stinkin’ Pedialyte.

Figuring out Sam’s feeding schedule is the next step in order for him to be NPO, nothing by mouth, before surgery. For Sam, this means nothing by feeding tube, since that’s the only way he eats. Remember, I only taught Kindergarten, so my math skills are sub par. He can only have formula and clear liquids a certain number of hours before surgery. Again, you would think this would be easy for me. Maybe it’s a mental thing, not wanting to see my son sedated and prodded again. Once I have the schedule figured out, it’s setting my alarm for odd hours of the night in order to keep to the NPO schedule.

It’s making sure he has a bath, which is another story for another day. Let’s just say, trying to bathe a toddler with a trach makes for a pretty anxious mama.

That’s really only a piece of how we prepare for surgery. The morning of, is a bit chaotic, but I have to say, we have it down to a science now.

Coming home is a whole other ball game. Thankfully, Sam usually recovers very well. Being mentally drained for me, makes for a couple of extremely exhausting days following a procedure day. Thank you Lord for coffee and home care nurses!

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