Naked Neck Club Update
Celebrating the Naked Neck Club!
Things are going fantastic so far. Sam is rockin' the Naked Neck Club. The hole (stoma) in his neck is still fairly open, which means he is still breathing out of his neck, so we are not out of the woods yet, but it has shrunk a lot. Still can't wait for the day that bathtime is not terrifying for us. We are still doing trach cares, but they are taking WAY less time than we are accustomed to. Not suctioning him is definitely hard to get used to, but I don't think any of us miss it. All good things!
One of the things we have noticed the most is Sam's voice is a little louder and the things he tries to say are a bit more pronounced. He is definitely experimenting more with his voice and it's a beautiful thing.
Next week, we will see his ENT and he will determine if Sam's stoma (hole) in his neck needs to be stitched. At this point, it is very likely. This isn't surprising for how long Sam had his trach.
As mentioned, Sam's spinal MRI showed some things that need further investigation. One of the things they were looking for, but thankfully did not find, was a tethered chord. He will have a colonoscopy, endoscopy, and barium enema to further investigate. This could be some answers to questions we have had for a very long time. Only hoping and praying the answers are easily fixable.
This guy doesn't seem to catch a break, but he sure handles it all like a champ. If only we could all look at life like he does on a daily basis.
Dyeing Easter Eggs
The Easter Bunny really has to get creative when you have a kiddo who doesn't eat anything by mouth. : )
Someone was into finding Easter eggs for the first time!
I've got my plates!
One of Sam's home care nurses who has been with Sam since he came home from the hospital as a baby, had her 1st baby. What a special moment.
Happy Easter!
Home
Only spending one night in a hospital feels a little weird, but man does it feel good. We got home with a naked neck early this afternoon. I cannot stop running my hands over his bare neck!!!
Sam had a fantastic night. He decided to make his already exhausted mama more tired and stayed up WAY past his bedtime, but I wasn’t surprised. His oxygen was 100% for most of the evening. It did get lower throughout the night, but nothing that concerned me or the medical staff.
Sleeping good!
Doing his nebulizer treatments is a new thing for us. He thought it was pretty funny to have the mask over his nose and mouth and not over his neck. He did such a great job. I was so proud of him!
Not suctioning his trach site is another new, but great normal. He’s doing a great job of clearing his own secretions. Sam has always had a good, strong cough, and we are thankful for that.
Sam’s MRI did show something that will need to be addressed, but it was not our focus for this hospital stay. The good news about it is that it gave answers to something that we’ve been looking for a LONG time. Prayers for Sam’s doctor’s and our discernment on this.
Prayers for our first night being at home. Sean and I are a little leery because we are not used to things going smoothly, but that doesn’t mean they can’t! We are SO ready for this new chapter!
Thank you so much for your continued support. It warms our hearts to read your messages and we feel all the love so much.
Faith Over Fear
Sam Strong
I can’t eat the doughnut, but I can lick it!
Waiting for Dad to come get us!
This is so weird!
Naked Neck Club
Naked Neck Club?!?!
The day started out as a normal day in our house getting ready for a surgery/procedure for Sam. It’s routine for us. It always feels a little different when Sean is coming. If Sean takes off work to come instead of a nurse, that means the surgery/procedure is a much bigger deal to us.
Ready to be part of the Naked Neck Club!
Are we ready for this?!
Sam’s PTSD kicked in as soon as we entered the hospital doors. He continually shakes his head, waves his little pointer finger in the air and says, “Uh, uh!” As you probably guessed that means, no. He does a somewhat fake cry, grabs my legs, and burrows his head into my stomach. He lifts his head, points to his arm, grimaces, and says, “Oke.” That means poke. Poor, sweet boy knows exactly what’s coming. The only thing I can do is hug him and tell him, I’m sorry.
“Poke” No!
I have watched my son roll away to surgery over 70 times in his short life. Watching your child roll away to an operating room does not get easier the more you do it. If anything, for me, it gets harder. I miss the days that he doesn’t remember what’s about to happen.
BUT, today was going to be a good day! And so far, it has been!!!
About an hour after he rolled away, his ENT came to give us the great news that his airway looked good!!! He told us he would meet us in the PICU when Sam was done with his MRI and WE would get the honors of taking out his trach! Taking out a trach is not a big deal to us. We do trach changes every two weeks and sometimes more when it comes out accidentally or purposely. Naughty Sam. It’s the leaving it out part that is completely new. Gulp.
We waited about another hour before the MRI was done. The nurse came and got us from the surgery waiting room and we went up with Sam to the PICU.
He’s always a little groggy after a procedure, but it doesn’t take long for him to perk up. We got situated in our room and waited for his ENT.
“Are you ready?”, he asked when walked into the room. Everything feels a little blurry after that.
No trach!!!!!!
It’s been about eight hours since Sam joined the Naked Neck Club and he is doing great. If he does well overnight, we will go home tomorrow. That feels like scariest and most exciting thing.
It generally takes about two weeks for the hole to fully close. There’s a 50/50 chance it won’t close on its own. In this case, they will stitch it shut. Because Sam’s had his trach for as long as he has, it’s more likely they will have to stitch it.
This has been the weirdest experience I have ever been through. It's so surreal. I don’t even know what my emotions are.
Please pray Sam has a good night and even more for the next couple of weeks while we live at home without a safe airway. You’ve got this buddy!
Naked Neck Club
Sam Strong
Faith OVER Fear