Blog

Pseudomonas

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!

Sam’s been walking since November and I’ve been meaning to post a video since then. Here it finally is! Click here to see Sam walk!

Sam strong!

Sam Update

Sam continues to keep all of us on our toes, but he’s had a really good, very healthy, last couple of months.

We did have one trip to the Children’s ER in November, but that’s only because we don’t have any other place to go. Sam decided to eat the heck out of a purple colored pencil, yes folks, a colored pencil. You don’t eat food, but you’ll gnaw on a colored pencil?! My thoughts exactly. I had no idea he was even chewing on anything. He was standing in front of the TV, watching who knows what. He coughed. Like normal, I went to suction him. Oh boy!!! Purple colored pencil everywhere! And then the scary part. Purple was literally spilling out of his trach. Not good folks! I had to suction him a good ten to fifteen times before his secretions were clear again. Kinda gross, I know. There were actually small specks of purple colored pencil in the suction tubing. Oh great. My first thought, aspiration pneumonia. After we finally suctioned all of the purple out, Mr. Superman went about his normal mischievous behavior acting as if nothing had even happened.

I went to bed mentally preparing myself it could be a long night. Nope. He slept great and showed no signs of aspiration pneumonia. Whew. It wasn’t until his speech pathologist at feeding clinic reminded us of the three day a week antibiotic Sam is on, which has been a God send for Sam this past year, that it dawned on us. Oh yeah, it’s highly likely the antibiotic kicked anything that may have tried to brew. Thank goodness. Aspiration pneumonia is not pretty.

The next day, I wasn’t worried at all. One thing I’ve learned about aspiration pneumonia is it comes on very quickly. Sam’s doctor still wanted him to be observed and x-rays done to be safe; hence, a very long, eight hour trip to the Children’s ER. It felt a little silly to me, but I can’t complain about an overly cautious doctor, right?! No, we are incredibly thankful for this doctor who has saved Sam’s life more than once.

Feeding therapy…

We’ve been going to feeding clinic for a couple of months now. This is a new, scary, and fun thing for us because it’s the first therapy we’ve been able to do outside our house. For the past two years, all the therapies have come to us, which has been and still is, awesome. Although there’s something about taking your baby, yes, I know he’s a toddler now, just let me have my moment, out in public. Sam is so darn friendly, waving at every person who walks by him. I feel like I have to say hi to people for him since he doesn’t have a voice. Most the time he’s just waving and no one sees him. Once they do, they can’t resist his sweet smile and the big, “Hello, I’m Sam.”, wave. Okay, okay, onto feeding clinic.

Although, he has a long way to go, he has made a lot of progress. In the past, even when Sam would touch different foods, he would instantly gag. Up until a couple of months ago, if food even came near his mouth, he would gag and end up needing lots of suctioning. Now, he rarely gags. In order for Sam to even be able to do a swallow study, he has to be able to drink an entire med cup (like the cup you get when you buy children’s ibuprofen or Tylenol) of a thickened liquid. Let’s just say, although he’s come a long way, he’s not even close to that. He’ll get there!

Because of the aspiration episode, Sam’s ENT has decided to do an endoscopy instead of waiting until he is able to do a swallow study. It’s kind of a bummer because it’s another sedation for Sam, but it will give us a concrete answer if the last surgery worked or not. It will tell us if the hole in Sam’s airway has been repaired.

Two years ago today, we brought Sam home with us for the very first time after living in the hospital for seven months. The word that comes to mind from two years ago…terrifying. I remember thinking… There’s no code blue button at home. There’s no button to push where thirty something people will immediately rush into Sam’s room and save his life. His life is now in our hands. I am not a doctor. I am not a nurse. I am just a mama, but we’ve got this. When Sam was seven months old, developmentally he was like a newborn. He couldn’t lift his head on his own and only moved his arms legs. Most didn’t think Sam would make it out of that hospital. Not only did he make it home, he’s thriving! He is now walking! He’s actually been walking since the end of November, but I realized I never posted this super exciting milestone. A milestone two years ago, that was not promising.

That was a bit long winded!

I guess I shouldn’t have bragged how healthy Sam has been. I’ve been working on this post the past few weeks or so, excited to publish it on his anniversary. And now, I’m sitting here, sleep deprived, with a very sick little boy, hoping and praying we don’t have to spend his anniversary in the hospital.

 

The Holidays and the Complex Child

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!

Sam

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

 

Help Please!

I’ve got this. I can do it myself. I am strong. To me, the first two thoughts are lies society tells us. We seem to have it all together if we can manage our home, family, work, and everything else in our lives, when we can do it all by ourselves and keep smiling. Can we really manage everything and be happy at the same time? I know I can’t. I don’t think that’s the way we were made. So many of us, including myself sometimes, believe that’s how we’re suppose to live life. What if we didn’t hesitate to ask for an extra hand when things get tough or life throws us a curve ball? I can tell you, from experience, being able to ask for help has gotten me through an awful lot.

I’ve asked for help A LOT the last few years. At first, it was really hard. It felt weird and I was always worried I was burdening others. It’s still not always easy, but I’ve slowly realized, people genuinely want to help. What’s the worst someone can do? Say no, right?

I don’t have this. I can’t do it by myself, but I am strong. Those are the words that have lead me to where I am today.  I don’t know why some of us carry a heavier burden than others, but when you do, remember, asking for help is okay. Don’t listen to the lies society tells you. Listen to the wise words of Charlie Brown. “Asking for help isn’t weak. It’s a great example of how to take care of yourself.”

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. 

The Long Story on the Big Surgery

I have to admit, on the inside, I was a complete wreck the few weeks leading up to the surgery. My head was telling my heart things that were not pretty. Although, they were all justifiable, I was worrying, which I means, in my opinion, I wasn’t trusting God. When your surgeon tells you, many times, over a two year period, if the surgery doesn’t go well, we won’t take our son home with us, as in he will not make it, you can probably imagine, what was going through my head.

My husband would tell you he was pretty much a punching bag the last few days before surgery. He’s right. I can only say thank you to him for letting me. Ya know the whole Yin and Yang thing? Well, l can tell you, after twenty years. It’s for real, at least with us, it is. Corny, I know, but I couldn’t do this journey as well as I have without him by my side.

The day of surgery was, of course busy, but quiet. Sam’s nurse even commented on how unusually quiet Sean and I were that morning. We had Sam’s normal six bags to leave the house and this time, my suitcase packed. His normal bags, just to leave the house, include oxygen, an emergency bag (the size of a large diaper bag), feeding backpack, suction machine, pulse oximeter, and of course, a regular diaper bag. Although you would find many things in Sam’s regular diaper bag you would not in a typical toddlers diaper bag. Sam had his nebs, meds, a bath, trach and g-tube (feeding tube) cares done. On the outside, we were all ready to go.

Our nurse helped us pack Sam in the van and we were off, me driving and Sean in the back. Someone always has to be with Sam in the back, in case he needs to be suctioned or any other nursing duties need to be done. When we arrived at the hospital, Sean and I realized neither of us said a word to each other the entire drive, which is not normal for us. Later, Sean told me he was planning Sam’s funeral in his head. My thoughts weren’t very far off from his. My stomach was in knots. When we finally got to the hospital, we found our normal handicap spot and sat there silently for what felt like an hour, but was probably only a few minutes. As we started unpacking the van, Sean suggested going home. I said, okay, with a smile. I think we were both a bit serious, but knew we couldn’t.

We unpacked all of Sam’s things, strategically placed them in their special spots on the stroller, and again, quietly walked across the skyway to the Welcome Desk at Children’s, like we have so many times.

Sam was more than ready. Per the anesthesiologist who saw him this time, you would think he would not be this happy here, especially considering how many times he has had to go through this. He’s a trooper alright.

We said goodbye to Sam for the thirty somethingth time and went to our usual private family waiting room in the surgery waiting area. Eat. Pray. Wait. Pray. Wait. Pray. Wait. Pray. Wait…

Thankfully, there was a GI surgeon to check Sam out before the surgery to make sure he didn’t need another dilation, which would have cancelled the surgery, again. Sean would tell you he was kind of hoping that’s what would have happened. When GI was done, as they always do, he came and showed us the results. I’ve seen A LOT of pictures of Sam’s esophagus, and for the first time in Sam’s life, it looked beautiful!

As soon as the GI surgeon walked out of the room, Sean and I just looked at each other with fear in our eyes. I told him, “He’s (Sam) got this.” And again, we waited. Pray. Wait. Pray. Wait. Pray. Wait. Pray. Wait…

About two and a half hours later, which really isn’t too long in our world of surgery waiting time, Sam’s ENT surgeon walked into the room with a big smile on his face, two hands in the air, both his pointer and middle fingers crossed. Whew. I’ve been told he’s not a surgeon to be nervous or at least show any nervousness. He was definitely nervous that day. In the two years, we’ve know him, I’ve only seen him nervous once. He was very happy, but told us not to thank him yet, and “knocked on wood” several times. He looked at me with sincere relief, reminding me of what could have happened, and I know, a weight was lifted off his shoulders.

The reason Sam’s ENT didn’t want us to thank him yet is because we won’t know until November 27th if the surgery worked or not. Basically they sewed the hole in Sam’s airway shut and the sutures can easily break open, especially when Sam refluxes, which is something he does quite a bit.

They will do a swallow study to make sure the food only goes down his esophagus and not into his lungs. I’m not sure how they do a swallow study on a kid who’s never eaten anything by mouth. No one else seems to know the answer to that question either, but they scheduled the appointment so someone must know the answer. We’ll see. I like to burn those bridges when we get there. There’s no sense in worrying about something I have no control over. Yes, I’m eating my words right now. ; )

We will go into the appointment with high hopes, low expectations. As some of you might recall, I wrote about this on Sam’s CaringBridge back in August of 2017. My thoughts haven’t changed…

High hopes, but low expectations, leaves less room for disappointment. Some might disagree, but I believe life is easier this way and there leaves little room for premeditated resentment. William Shakespeare once wrote, “Expectation is the root of all heartache”. I think he was pretty spot on. In life, there is very little we can control. I want my kids to see I choose happiness over hopelessness and faith over fear in every situation we face. I want them to see how attitude can change everything, even when things don’t go the way we think they should.

I hope you have a Happy Thanksgiving! I know my list of things to be thankful for is pretty long, life being my number one, right now. One of Sam’s nurses shared with me something her wise mother, in my opinion, encouraged her to do every day, ever since she was a little girl. She told her, no matter what she’s going through, each day, find three things to be thankful for. Life isn’t perfect, we are not perfect, but I’ve found gratitude can sure make the road quite a bit smoother.