Overall, Sam’s procedures went well. When we checked in, there was gal training, the receptionist told her, ”Sam is a frequent flyer here.” He put on the charm for the gal training and she was, of course, taken, ”That smile,” she said. “He just made my day.” Yeah, he does that.
The PTSD unfortunately kicked in way before we saw the purple pj’s. As soon as we walked through the second set of automatic double doors, he knew exactly where we were. Poor buddy, became instantly stressed, but made sure he brought on the charm for a few minutes to show off how, he knew without being told, to step on the scale and then pointed to the place on the wall where he would get measured. He bounced off the scale and stood under the wall chart to be measured. Many familiar faces said, ”Hi Sam!” in the process.
The purple pj’s came into play now. The stress level was pretty high at this point. So thankful for the nurse who thought of and agreed to wait for the Versed to kick in until we put on the dreaded purple pj’s. Later, the anesthesiologist said, ”Just leave him in his diaper!” That’s exactly what we did, even after the Versed kicked in.
Oh boy do I love and hate Versed all in one. It takes Sam’s stress away almost instantaneously, but also makes him really loopy, which can be a little creepy to watch your baby experience.
The MRI results we don’t know yet and the ENT portion went well. Sam’s ENT is a bit new to us. He was very excited to look inside Sam’s airway as he hasn’t yet seen it. He confirmed Sam has a Type II Laryngeal Cleft. Shoot, it’s still there. Sam’s previous ENT is getting close to retirement and moved to Arizona to help start a new program. Although we were very sad to loose him, the transition has gone very well. His new ENT trained closely, and is on a first name basis with the Sam’s doctors in Cincinnati. Bonus.
We felt like a deer in headlights with the GI portion, but for the most part, we got it all sorted out the next day. Unfortunately, they placed a gj-tube in Sam again, which is a more complicated type of feeding tube then Sam’s had for a while. Sam did not need to be dilated and there weren’t any clear anatomical answers for his GI concerns. We will wait for the biopsy results.
Now let’s hold onto our seatbelts, and pray nothing holds us back from getting on that airplane next week! The planning and preparation for traveling with a kid like Sam is insane, but what a privilege. Thanks to our friend who nominated us in 2019, the MN Vikings, and the Best Christmas Ever, we’re spending Christmas on the beach!
Wishing you and your family a very Merry Christmas!
This week Sam will have an endoscopy, sigmoidoscopy, MRI, and ENT will check to see if his trach needs to be upsized (bigger trach tube). I love when we can get lots of docs in on one sedation!
As I mentioned previously, Sam has had some GI (tummy) issues that we are hoping can get figured out, hence the endoscopy and sigmoidoscopy.
The MRI is a precaution for the seizures he’s had to rule out anything serious.
Sam has not been put out in over six months!! It’s the longest he’s ever gone in his life, by far!!! Maybe since it’s been so long his PTSD won’t kick in when he sees the purple surgery p.j.’s. Fingers crossed.
Prayers for no PTST with Sam, all the docs involved, some GI answers, nothing serious on the MRI, the anesthesia team, and a smooth, quick recovery so he can get back to this kind of crazy stuff.
I have been writing this post off and on since July. Where did the summer go?! And now we’ve already been in school a few months?!
Since our last hospital stay WAY back in May, life was overall good for Sam until August hit. He was mostly healthy and doing all the things. And when I say, all the things, I mean ALL the things. That being said, I will update on the not so great stuff and end with the great things we did this past summer.
I think the reason I have been struggling to continue writing this post is because I was so excited to have only good news. I’ll try be a bit brief with the not so great stuff so we can focus on the super fun summer we had with Sam.
We’ve known since Sam was a baby, he “might” need an eye surgery to correct his lazy eyes. Yes, that’s plural for Sam. We have tried patching off and on over the years. His ophthalmologist let us know at his last appointment, Sam will need the eye surgery. We plan to schedule this after Christmas.
One of Sam’s many specialists is immunology. He only has this appointment once a year now. To make a long story short, one of his labs was very off at his last appointment. Both his immunologist and pediatrician thought the off labs might be the “c” word. Thank you Lord, after oncology looked over his labs, they were reassured cancer was not the case. This left everyone scratching their heads on which specialist we should see. It was narrowed down to nephrology. Thankfully, this is already a specialty Sam sees because of his hypertension (high blood) issues.
We had our appointment with nephrology and did lots of other testing to hopefully rule out chronic kidney disease (CKD). At this appointment, his nephrologist said, either way they would have to treat the way off lab results as they are at “too dangerously of a high level”. Unfortunately, we did recently find out Sam has CKD. The CKD is in the early stage so that is a bonus. We will have to see nephrology more often now so they can keep a close eye on his kidneys.
In the past month, Sam has also had a few seizure like episodes. He saw a neurologist for this and confirmed the episodes were likely seizures. He prescribed Sam a rescue med for if the seizures last more than five minutes. He will have an MRI and EEG done soon to rule anything serious. We are confident and praying there is nothing serious.
Sam will have endoscopy to check on his esophagus and tummy. We will be able to coordinate his MRI with the endoscopy. I try very hard to coordinate sedation procedures/surgeries when I can with this complicated little man! Just call me the CEO of Sam Inc.!
Sam gets poked a lot as is, but the past few months have been more than normal. He was pretty sick for a week in October so this made for even more poking. Thankfully we were able to schedule an appointment rather than having to take him to the emergency room like normal. After all the testing, he ended up being super constipated and had tracheitis. He was pretty miserable for about a week, BUT we stayed out of the hospital!
We will shoot for the Spring to go to Cincinnati again and hopefully get the hole in Sam’s airway fixed. Sam’s pulmonologist suggested we wait till after winter to go. Cincinnati thought that was a good idea too.
Now, let’s move on from the cruddy stuff and into the good stuff! My mama heart was full with the many firsts Sam had this summer.
Fun at Como Zoo.
He was finally cleared by his doctors to go back to school. He started summer school two days a week and loved it.
Sam had only been into a store one time in his life and it was brief. We decided to go big or go home for his first real trip to a store. Yep, the Mall of America. He was mostly in awe of the lights and high ceilings. We went to a dinosaur exhibit next to the mall. Let’s just say the mall was much more interesting.
We celebrated Sam’s fifth birthday! Swimming isn’t the best birthday activity for Sam, but he loves the water so much! If he didn’t have a trach, I’m pretty sure he would be in fish in the water. Some day!
Before Sam was born, we spent A LOT of time at our family cabin. Since he’s been born, we have brought him on a day trip once, there and back. Traveling with a medically complex child is no joke. Being on a lake with a child with a trach, again, no joke. It always feels a little odd when someone asks what would happen if Sam fell in the water and our response is, “He would most likely die.” We were also able to go to a friend’s cabin twice.
Thank you to all of you who have collected pop tabs for us! We didn’t turn them in last year because of Covid, but had a lot to throw in the bin at the Ronald McDonald House Charities. Sam thought it was pretty fun to throw the pop tabs in the big bin. Although, they probably wouldn’t admit it, I think Will and Abby thought so too.
We took a spontaneous trip to Duluth. This was a really big deal for us and we were so glad we did. We had a blast!
Sam’s first day of Kindergarten! No words from this mama for this emotional day.
Another spontaneous thing we did was go to a Gopher Football Game. Sam didn’t like when anyone scored a touchdown. He got pretty scared with all the yelling, but overall had a great time.
He, of course, loved the apple orchard.
Sam’s first time EVER in a grocery store! I wondered what people were thinking when I was overly excited to put him in the cart. It’s funny what we take for granted sometimes. I remember when my other kids were little I was happy to leave them at home when it came to grocery shopping.
We were hoping Sam would be over his sickness before Halloween. He was back to himself the day of Halloween! He has been out on Halloween, but hasn’t been trick-or-treating before, partly because of being immunocompromised and partly because he can’t eat the candy anyway. I thought he would get a kick of people putting something into his bucket. I was wrong. The first house we brought him to, he tried to go inside. He got pretty sad when he realized we couldn’t go inside. This is where it’s okay to laugh. We did. We’ll try again next year! We had one neighbor who had bubbles and something else for Sam knowing he can’t eat the candy. That little gesture made my heart flutter.
We all have stuff, stuff that makes life hard. We can make a choice to see the beauty or focus on the pain. The enemy likes us to focus our time and energy on the pain. I believe when we see His beauty in the pain, our strength gets stronger and our hearts get happier.