Tag: GIRD

When Bad News Almost Feels Like Good News

Published on by Jamie Grant6 Comments

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

Published on by Jamie Grant6 Comments

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

Published on by Jamie Grant5 Comments

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!

The Holidays and the Complex Child

Published on by Jamie Grant6 Comments

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

The Long Story on the Big Surgery

Published on by Jamie Grant12 Comments

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.