When Bad News Almost Feels Like Good News

When bad news means fixable answers to questions you’ve been pondering, about your child’s health, sadly, it almost feels like good news.

I have to start by saying, we didn’t even get asked for Sam’s name when checked in at the surgery desk. I don’t think that was the first time. Many of the staff in surgery are on a first name basis with Sam. It is the most lousy and endearing feeling all in one.

Today was not so great, but it could be much worse. Sam’s ENT told us, “Most kids go one, two, and maybe three, but Sam goes one, two, three, four, five, six, seven, eight, nine, ten…”

In order for me not to write a book, I can tell you…

…Sam’s last surgery did not work. They did part of the surgery, but the rest will not get done until all the GI (tummy) stuff gets figured out.

…his esophagus needed to be dilated, AGAIN.

…they couldn’t check to see if his nissen surgery came unwrapped, which would be for the fourth time, because they weren’t able to pass the scope through. They will likely do other testing to check on this.

…we will wait to see what the biopsies tell us.

…Sam will likely get a more complicated feeding tube placed when they dilate his esophagus, AGAIN in four to six weeks.

Although there was quite a bit of heavy news, everything is fixable and that is the good news. The other good news is we were able to find answers to the elcalated retching and aspiration episodes. What’s another surgery when you’ve had more than thirty and you’re not even three years old yet?! I’m close to forty and I haven’t even had one people!

Even more good news, Sam recovered amazingly, once again. He makes anesthesia look easy. He makes surgery look easy. He makes hard stuff look easy, period. Maybe he really is Superman. He’s our Superman, that’s for sure.

“Dear brothers and sisters, when troubles of any kind come your way, consider it an opportunity for great joy.” James 1:2

The Appointment

I called Sam’s ENT to find out when we were going to schedule his bronchoscopy, the test they decided to do instead of the swallow study, to find out if his last surgery worked or not. I figured since I had already talked to Sam’s ENT previously, he would just say to go ahead and schedule the bronchoscopy. I was wrong. He wanted to see us in the clinic first. What?! Usually, during cold and flu season, Sam’s docs try to keep us out of their offices. You see, I’ve known this doctor for over two years now. He doesn’t give bad news over the phone. What bad news could he give us though? It didn’t make sense to me. My mind was racing on why he wanted us to come to the clinic.

I didn’t make up too much in my head. Here’s where my thoughts went. They would do a bronchcoscopy and if the surgery didn’t work, Sam’s ENT would send us to Cincinnati. I’m sure you’re wondering why in the world I would think that. A little history…

When Sam was first diagnosed with a Type II Laryngeal Cleft, the day after he had his third code, his ENT told us if Sam was a Type III or IV, he wouldn’t touch him and would send us to Cincinnati, the pediatric airway hospital of the world. We now know Sam’s cleft is a severe Type II, very close to Type III. They range from a I to a IV, a type IV being the worst case scenario. Kids with a Type IV don’t generally make it. If any of that makes sense, that’s why I made up he might send us to Cincinnati, which if I thought a lot about it, felt very overwhelming. I couldn’t think of any other bad news he might give us. I wasn’t even sure he was gong to give us bad news. I was only assuming.

I know they say, never assume, but I have to say, in this situation, I’m glad I did.

We waited about a month from the time we scheduled the appointment to the day of. Like Dr. Sues says, the Waiting Place is “a most useless place”. For the most part, I was able to stay out of the Waiting Place.

Appointment day…

We learned, Sam’s ENT did have us come in because he was going to deliver, what he thought, was bad news. He told us they would do another bronchcoscopy to see if Sam’s surgery worked. If it didn’t work, they would do the surgery again. Whew. I told him what I had made up in my head. He laughed and said he could send us there if we wanted. Nope! I know, without a doubt, our ENT has Sam’s best interest in mind, and if he did not feel qualified, he wouldn’t have done the surgery. I’ve been told by more than one person, and it’s evident, he holds a special place in his heart for Sam. Every time we see him, he reminds me how sick Sam was. He is always amazed at how well Sam is doing now.

His other bad news was that it will be highly unlikely Sam will be decanulated this year because of all of his aspirating episodes. In other words, it’s not likely Sam will get his trach out until next year. Also, not a big shocker for us. We had already suspected that was going to be the case, knowing he has been aspirating a lot. Again, I’m glad I assumed, better yet, mentally prepared myself for this appointment.

In the meantime, like I mentioned in my previous post, Sam has been having some new GI (tummy) issues. Next Monday, Sam will have a bronchcoscopy with two ENT surgeons with the possibility of surgery, and now they have also added an upper endoscopy with a GI doctor, to hopefully be able to answer questions on Sam’s GI stuff.

Pray for Sam on Monday. The older he gets, the more aware he becomes. He will be put under for the thirty somethingth time and that doesn’t mean it gets easier for him or us. Pray the last surgery worked and they will not have to do it again. Pray we will get easy, fixable answers to his GI issues.

This kid sure likes to keep a lot of really smart, highly educated people, and his family guessing. He might be adding some gray hairs, but he is definitely worth it.

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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 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.

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!

 

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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