Thursday, May 18, 2017

Post dental surgery


First off, I wanted to take the time to simply say thank you. Thank you to the person that is reading this. Thank you for being part of our journey and wanting to be here! I could never adequately express how grateful I am to be able to share our story and hopefully make some sort of impact in your life and in those that you choose to share our story with. It's been a bumpy ride these last few months, in terms of Nate's overall health, but we are always thankful that crazy thing in his head remains stable.

As in the previous post, Nate was able to recover from his tonsil surgery quite quickly. If you know someone that has an issue with their tonsils and qualifies for a tonsillotomy versus a tonsillectomy, go with the tonsillotomy! The entire process is much easier than the tonsillectomy.

Nate had his pre-op visit on May 3 prior to the dental surgery he was scheduled for. Everything checked out this time and he was good to go. Of course, in pure Nate fashion, he started to not feel well on May 7, and vomits three times throughout the afternoon into the evening. All I could do is shake my head...this kid just can't get a break. He handled himself well throughout the ordeal and was fine by Monday. Of course, I start to think does he have a stomach bug, is his head bothering him, what else could it be? I wish I could just simply think it's a virus that he picked up, but nope, my brain doesn't operate that way, nor does his diagnosis allow me to do that. One of the downsides to having a child with a brain tumor and hydrocephalus.

Nate and I had to head into Boston on Monday for his 6 month follow up with his neuro-opthamologist. I love her. She is so good with him! His eyes are perfect, as is his optic nerve. She is allowing him to move to yearly appointments which is music to my ears!

Yesterday, May 17 was his dental surgery. The week leading up to the surgery were stressful, due to our insurance company denying coverage for the medical portion of the surgery. Long story short, our previous insurance company had already approved it, but our insurance switched on April 1. It approved his tonsil surgery, but denied the dental one. They are saying that our benefits do not cover anesthesia for dental restoration. The appeal has been made and now we wait. Either way, he was getting the surgery, whether we have to pay for it, or they do. Thankfully, we are in a position where we can handle it. I'm frustrated with the entire process, but the surgery is over and done with. My kid finally can be pain-free and hopefully, start eating a normal (whatever that is!) diet.

I was definitely nervous going into this surgery because he's always had everything done at Boston Children's Hospital and this would be an entirely new process for him. Everyone that dealt with him, from the woman at registration, to each nurse, to the anesthesiologist, down to the dentist, was absolutely fabulous! I couldn't have asked for a better experience for Nate. My many thanks go out to Berkshire Pediatric Dentistry and the Crane Center. The entire surgery took just under 2 hours. Thankfully, she was able to save all of his affected teeth. She was able to fill 5 teeth and only have to cap 2 of them. I was so happy that he woke up in good spirits afterwards and was his normal silly self by the afternoon. He is simply amazing.


I can only hope that today is the start of a long stretch of good health (and good sleep!) for him.

Since we are still in the middle of Brain Tumor Awareness month, I wanted to give an update. We are just under the $60,000 mark which makes my heart swell. If you are not affected by being in the brain tumor world, consider yourself lucky. I will always advocate and fight for those that are affected. This diagnosis has changed me in more ways than I can count and I will do everything in my power to help those that have it more difficult than Nate has had it as his situation can change in an instant. If you haven't already, please consider making a donation to Team Nate the Great

Also, there is another opportunity this month to help us help others. My lovely friend, Robin, has offered her commission up to anyone that makes a purchase from our event at Stella & Dot. If you click the link, make a purchase, a portion of your purchase will go straight to Team Nate the Great. Not only are you buying something cute for yourself (or someone else!), you are helping the pediatric brain tumor community. What's better than that????


And lastly, I have bracelets that say Team Nate the Great on them. If you are interested in having one, please send me a message, and I will mail one out to you!





Wednesday, May 3, 2017

Post-surgery, pre-surgery, Brain Tumor Awareness month

April seemed to completely fly by. I honestly feel like I blinked and it was May. Nathan had his tonsillotomy on April 20th. A tonsillotomy is where the tonsils are only partially removed and the last layer of tissue is left in the throat. Nathan needed his tonsils out (his adenoids have been removed twice already) due to obstructive sleep apnea. This was the best hospital experience for him thus far. He was calm and ready for the procedure. It sounds funny to say that since he's only 5, but I estimate that he's been under anesthesia about 15 times. If you've been following his journey, doctors haven't been his favorite people so to have an experience like the one we did, it's a step in the right direction since he'll never be fully removed from having to go. I can't ever say enough about Boston Children's Hospital and their staff. From the moment you check in until the time you wheel out, everyone is there to make the time you have to spend there as comfortable as it can be. It's priceless.
winning at Wheel of Fortune in pre-op
loving the clowns singing a "Nate the Great" song


in recovery, post-surgery
just needs Mama's hair


all done & ready to go home (he needed the ice pack for a split lip)
in the car, on the way home...thumbs up!


sleeping soundly the night of surgery
His recovery was somewhat seamless. He ate dinner the night of surgery. He had 4 "white eggs" (hard-boiled eggs), a bowl of chocolate ice cream, and a Popsicle. Not too bad for a kid who surgery in the morning! Friday and Saturday were also good days for him...he was able to play, eat soft foods, and be seemingly pain-free. On Sunday morning, he woke up and immediately threw up. As his mom, I don't think I'll ever get used to him throwing up. My thoughts usually go for "what's wrong with his head?" but I just attributed it to the trauma his throat had been through and the crap he was probably swallowing as his throat healed. He chose to spend the morning/afternoon on the couch (which is unlike him!) so I knew he wasn't feeling well. He perked up as the day went on and started feeling better by the time he went to bed.
taking a snooze on the couch
wanted to get some sun...lol













He took two days off of school and went back on Wednesday, April 26...clearly not too difficult of a recovery! :)  The kid is amazing!

Today, he had his pre-op appointment for the dental surgery that's coming in 2 weeks. It went as well as it could; of course he has fluid in his left ear. I'm hoping it doesn't turn into anything further, but if it does, it does. Can't really do anything to stop it, right? I can't wait until this part is over. I just want him to be able to chew and swallow like a normal kid. Maybe then, he can start to try more foods AND more importantly, sleep.  Yes, sleep!!! Speaking of that...April was rough! He slept "through" the night 5 times. And that means until 5:00. I don't know how he makes it through the day like he does. He's 0/3 in May too. Ughhhhhh! I'll sleep when he's a teenager, I guess.

I am also on a fundraising/awareness push for the month of May, which is Brain Tumor Awareness month. I am hoping to be able to get to at least $60,000 by the end of the month. I've had 3 people donate so far and am so very appreciative!! If you'd like to donate or share his fundraising page, please go to Team Nate the Great.
If you'd like a Team Nate the Great bracelet to be able to spread awareness, please send me a message and I'll mail one out!

A friend left this quote on Nate's fundraising page and I wanted to share it here.

"Whenever you find yourself doubting how far you can go, just remember how far you have come. Remember everything you have faced, all the battles you have won, and all the fears you have overcome."