Everything went well with the procedure yesterday. Sam’s esophagus was dilated (stretched) and this time, the doctor was able to pass the scope farther down. The last time, they were not able to get the scope through. Progress.
Generally, when Sam wakes up from anesthesia, he’s a champ. Not this time. Thankfully, he has been fever free and breathing on his own, but is pretty miserable and lethargic. We are hoping this is a combination of the RSV and being put under. It also doesn’t help he his culture showed he has a tracheitis on top of everything, which is not surprising for Sam.
He seems to be tolerating the Pedialyte we started yesterday. We are holding onto that!
Prayers he will tolerate his formula when we start it today. Prayers he will stop spitting and start swallowing. Prayers he will turn the corner today and we can go home!
Sam isn’t doing great, but he’s been off the oxygen most of the day and has no fever. As long as he behaves himself, they will do the procedure (esophageal dilation) tomorrow!
These kind of things are a balancing act when it comes to medically complex kids. It often comes down to a risk benefit analysis. And there are so many factors involved. We are incredibly blessed with the care team Sam has when we are here. It is evident they care so much about our sweet little boy, want to get him better and back home where he belongs.
The smiles are few and far between, but he did sit up a few times today and even played for a couple of minutes. We’ll take it! So far, it’s looking like everyone is wrong about the getting worse before getting better. They are going to be wrong.
Prayers for an uneventful evening for Sam. Pray he can continue to breath on his own and stay fever free. Prayers for the procedure tomorrow and all who will care for him.
Thank you for all the love and continued support for our family. We are truly blessed.
It was a rough weekend, but he made it. He’s been needing some oxygen support, but we still have room to go up. Nice job, my little warrior.
Now, prayers for his procedure today! Pray for the doctor involved. She knows Sam, but is not his primary GI doctor, which isn’t unusual for Sam when he is having a dilation. Pray for the anesthesiologist and the rest of the team who will care for Sam. Pray for no complications and that we’ll be able to come home today. Pray there is an easy fix and nothing else is going on. Pray for peace and continued strength for all of us.
They were able to schedule Sam’s next procedure with his GI doctor, surgeon, and ENT for November 21st. Unfortunately, his little esophagus is seeming like it won’t wait that long.
After this last hospital stay, Sam’s respiratory doctor agreed it would be a good idea to keep him out of school until his next procedure. I get it. As much as I want Sam in school, I think the risks outweigh the benefits at the moment. We don’t need anything else on top of what’s going on medically.
Sam is really miserable right now, but we are home. His symptoms are indicating he needs another dilation. Hopefully, that’s all it is.
We called the weekend, on call GI doctor. Thankfully, instead of telling us to take him to the emergency room, she got him on the surgery schedule for Monday morning. I cannot tell you how happy I was about that. My heart was really dreading another hospital stay.
For whatever reason when Sam needs a dilation, he doesn’t tolerate his feeds. We are running Pedialyte at the lowest rate possible to hopefully keep him hydrated enough until Monday morning and avoid a hospital stay.
Please pray Sam will tolerate the Pedialyte and be able to stay home until Monday. Pray there is nothing else going on. This poor little boy could really catch a break.
Prayers for our stamina as we are tired. This fall has been hard. Prayers to calm our hearts as questions and concerns are hard to push aside right now.
I’m thankful to believe in a God who loves my little boy even more than I do, and that He will comfort and sustain all of us.
We are home and very happy to be here. What we thought would only be one night, turned into five nights. And of course, as a few of Sam’s doctors mentioned, he threw a curve ball.
Although we know what to expect, you don’t get use to hospital stays. More importantly, Sam is feeling much better. The older Sam gets, the harder it gets to be in the hospital, and all the more excited he gets when we come home.
We are now hoping he can make it two to four weeks for another esophageal dilation. His GI doctor wants Sam’s surgeon to be there, and Sam’s ENT plans to do a bronchoscopy. If you know anything about the medical world, scheduling three doctors at one time for a procedure is not an easy task. Prayers they can land on a time within the next two to three weeks. We do not want to be in the same situation we were in last week.
Thank you, thank you for all your prayers! They were definitely felt and answered.
Sam’s esophagus was barely open (esophageal stricture). This is nothing new for Sam, but it’s been a very long time since he’s needed a dilation. This is the best fixable answer we could ask for. His GI doctor dilated him and wants to dilate again in two to four weeks. Poor buddy.
Praying now he will tolerate Pedialyte. Generally, when Sam is hospitalized, the doctors want him to be successful on his home feeding regimen before we go home. We move very slow to get there. I was able to convince the docs to let him be successful on Pedialyte and let us work on the formula at home. Anything to give us a few less days in the hospital.
Now Sam just needs to turn the corner so we can get the heck out of dodge!
Thank you for all your prayers! Continued prayers Sam will turn the corner, his blood pressure will come down, and that he will not surprise us with anything else.
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 poor kid! We’ve landed ourselves in the hospital again. His pulmonologist said to bring him in if his symptoms didn’t get better. We brought him in on Tuesday morning. You would think by now, I would pack a “just in case” bag, but I really didn’t think we would be staying. Wrong.
On day two, after all the lab work ups, x-rays, and an ultrasound, Sam has two different tracheitis’ and rotavirus. His medical team and I were actually happy for the rotavirus diagnosis and not something more serious. It’s always nice to have an answer and not continue, what feels like, the guessing game.
He’s being treated for the tracheitis’ and they want to rest his tummy for a few days with IV fluids. He’s still miserable, but I am confident it won’t last too long. Hopefully, we can bust this joint in the next day or two. Hospital stays do not get easier the more you have.
On a side note, his dilation went well last week. He did need to be dilated, BUT his surgeon said we could start planning Cincinnati!!!
Thanks for praying for our sweet little boy and the rest of our family.
April was not so fun in this house, but thankfully we have all recovered. Most importantly to us, Sam is okay and we kept him out of the hospital.
It started with me not feeling too great. I already tested negative for Covid earlier in the week because we knew we had been exposed. When I started feeling cruddy, I tested again. Negative. Whew.
I had several rough days. Thank you Lord for home care nursing! On a normal day with Sam, we are incredibly thankful for our home care nurses. When he gets sick, even more grateful. Add me getting sick on top of all that. Home care nurses. No words.
Sam tested negative too, but then started getting sick a few days after I was feeling cruddy. Oh shoot. He was really sick for a good six days. He was on oxygen for four days and all the home therapies we could do that aren’t legal in most homes. We did get very close to having to bring him to the hospital, but we were able to keep him home. Again, home care nurses. Priceless.
About a week later, after I had started feeling better, I couldn’t smell or taste anything. Wait a minute!?!? I went and tested again. As I suspected…positive for Covid. What?! Those of you who have experienced these symptoms of Covid can understand how annoying it is! I’m happy to say it didn’t last too long.
Sam’s pulmonologist sent a nurse to the house to test Sam. Positive. Bummer. There was a lot of praying on my part, that he would be okay and we would be able to keep him out of the hospital.
Sean tested positive. The next day he started feeling cruddy. He was all excited to be able to get some things done around the house, but he was down for the count for almost ten days.
Will and Abby both tested negative, but had to do distance learning until their quarantine was up. Have I ever mentioned how much I love distance learning? Oh yeah, cause I don’t, not even a little. Because Abby ended up testing positive, she was able to go back to school a few days before Will. I’ve stopped trying to make sense of all the Covid rules.
During all this hoopla, I found out my grandma passed away. She was ninety-five, went peacefully, and although she was dealt a hard hand of cards in life, she lived a good life. Her legacy? She loved Jesus, taught us to pray, read our Bible, and have a relationship with Jesus.
Towards the end of her life, she could barely speak. I know she recognized us when my sister and I saw her for the first time in a long time. She clearly said two of my four children’s names. It wasn’t by chance she squeezed the two names out I have fought for on my knees in prayer countless times the past four plus years. I believe it was her heart that said those two names that day.
We didn’t get to go to her funeral, but this is where technology is a blessing. Thank you to my brother-in-law who held his phone up the entire funeral service so I could “be there”.
While Sam was sick, he was scheduled to have an upper endoscopy to check on his esophagus. As we suspected, surgery needed to be rescheduled.
To recap, Sam’s last dilation was in January. His surgeon told us, when Sam can go for six months without a dilation, he’ll give us the “a-okay” to go to Cincinnati.
Tomorrow, Sam will have his rescheduled procedure. It’s been almost exactly four months since Sam’s last dilation. We are hoping and praying, he will not need to be dilated.
I suppose no news is good news, right? For the most part, yes.
Sam’s dilation went very well. His esophagus was very narrow, but not as narrow as the last time he got dilated. Good news!
Again, we wait. If symptoms begin, we call surgery and they get Sam on the schedule. Generally, his symptoms consist of retching (throwing up), which start to become more frequent and violent as time goes on. Eventually, he’s not able to control his secretions, so he spits a lot too. Basically, he still creates secretions (spit), but if his esophagus is narrow enough or closed, there is no other place for the secretions to go except out his mouth. This makes for a very nauseous little boy. Poor guy.
After Sam’s dilation, his surgeon discussed WHEN Sam is able to go three months without a dilation, then he’ll plan to get Sam on the schedule to look at his esophagus. If things look good and open, we wait again. When Sam can go for at least six months without a dilation then his surgeon will feel good about us planning another trip to Cincinnati to hopefully get his airway fixed.
Sam also had a granuloma cauterized or how I like to make it more visual for you, the extra skin on the hole in his throat, sizzled off by a fire pen. This went well too. Although, it was a lot to look at after. For the next week or so, we cleaned gross puss and what looked like black soot around his trach site. Yuck and again, poor guy! Thankfully, it all healed very nicely.
The day after Sam’s dilation he seemed like he was recovering well. When he woke up the next morning, things went south very quickly. He ended up with a tracheitis. He had a couple of very rough days. We were able to catch this right away and treat the nasty, airway bacterial infection. Along with our hard work and the antibiotic nebs, like magic, Sam was back to his lively self in no time. Thank you for home care nurses!
Except for the spitting. No, not another thing, little buddy. His demeanor was back to his norm, but he wouldn’t swallow his secretions. Per Surgery we should bring him in to be evaluated in the next couple of days, unless things got worse, which for Sam means going to the ED (Emergency Department). Not the dreaded ED.Besides him not swallowing his secretions, he seems totally fine. Sometimes I wish they had another place for complex kids to go in these situations.
The next day, after talking with Sam’s Pulmonologist, she too thought he should be evaluated. Bummer.
We had planned to take him in early the next morning, knowing the less busy times of the ED. Sam had different plans. Good plans! When he woke up, the spitting had stopped!!! Thank you Lord!!!
Sam has been back to his spunky self, continuing to teach us what life is all about.