Tuesday, July 25, 2023

Happy 11th Birthday and an update! 7-25-2023

First I'll start off with a very Happy Birthday to our girl! She turned 11 on July 23rd. She always wants to go camping on her birthday but this year we had the opportunity to go up to an amazing cabin in Colorado and she decided she would rather do that. We spent it with some of our favorite people. She figured out how to open up a can of pop and it was a huge milestone and so very exciting that she was all about opening up everyone's drinks all weekend after that. Just proof that persistance and never giving up are well worth it and so rewarding! It was a great weekend and none of us wanted to leave. 

 She had her second post-op appointment on the 19th and everything turned out great!!! She rocked it as usual, even doing her numbing spray all by herself and sat there while he scoped up her nose. It looked so amazing with no build up in her nostrils or frontal sinus. He was so amazed at how well it looked and wished his adult patients would look that good post-op. She can go down to one nasal rinse a day with her budesodine (steroid) and she was given the ALL CLEAR to be a normal kid!! She is so excited to go kayaking and get to enjoy the lake. She will go back in November for one last scope and if everything is still looking great then she will be released and not have to go back!! We are so very happy to get to enjoy the rest of the summer with no restrictions!!

Thursday, July 13, 2023

Update 7/13/23

Sorry for the late update, it's been super busy around here. We went for her post-op appointment on June 29th. During this appointment he wanted to scope her and look in her nose to make sure everything still looked clean, wet, and there was no build up. I had talked to Braylee the night before about this and I promised her ice cream if she would sit still and allow him to scope her in the office so we didn't have to go to the OR. She agreed and did an amazing job of course. During the scope everything looked great but there was still some mesh that needed to dissolve and the steroid stent that he put in was still there too. Those typically take around a month to dissolve so she still had time. There was a little bit that he wanted to suction out to get a better look but her nasal passage is just so small that he couldn't comfortably fit both the scope and suction. So he decided that since everything looked good so far, we were going to give her a couple more weeks and continue with the nasal rinses and he added in a steroid prescription to be added into her nasal rinse water. We go back on the 19th and he will scope her again and if everything looks good she will be good to go for another couple months. If there is build up  he wants to get out then she will need to be taken back into the OR so that she will be asleep and he can clean her out without making her super uncomfortable. That would be scheduled for another day so that he can get an OR at Primary Childrens, where they are more equipped than the University of Utah Hopsital to handle her small airway.  As promised she got her ice cream but the only place open at 9 a.m is McDonald's so that's what she got😂. 

It's finally starting to turn summer here in Pinedale so fingers crossed that everything looks great on the 19th and she'll be able to finally enjoy the lake and some kayaking. We did give her her birthday present a month early so that she can do something fun while she recovers. It's been a huge hit. 

Saturday, June 10, 2023

DISCHARGED!!! 6/10/23

We are out of here! She did great over night! So happy to only stay 1 night! Now to get home and heal up! 

Friday, June 9, 2023

Successful surgery! 6/9/23

Surgery is done and everything went great!  He only went up the right side and was able to access behind her septum to get to the left side also and he made one big hole that will all drain out her right side. There was quite a bit of thick mucous and infection still up there but he got it all clean and should be good to go.  Because of her big septum deviation on her left side he didn't want to mess with that unless he had to go up that way so that she can have a successful deviation surgery later on. She's still back in the OR waking up so we'll get to see her in around 20-30 minutes. 

Thanks for all the juju, prayers, and good vibes. Keep them coming and hopefully we can head home tomorrow! 

Surgery #16 underway 6/9/23

She is back in surgery. It is scheduled to take around 4 hours. Please pray for our girl and her doctors. It never gets easier. 

Thursday, June 8, 2023

Surgery #16 tomorrow

Well, tomorrow is the day that we're finally going to hopefully get this taken care of. She has to be at the hospital at 7:45 a.m. she will be staying overnight at least.  He will be going up through her nose and making the opening to her frontal sinus bigger, how big we just don't know.  The length of stay and recovery will all depend on what he has to do.   She will also have to go back into the OR around 2 weeks post-op so that he can clean it out again and make sure everything is still staying clean and healthy. 

We sadly called off our trip to Minneapolis for the Children's Craniofacial Association Retreat which is the weekend of the 23rd. There is just to much up in the air for us to safely make that trip. We will miss everyone terribly and hope to make it again next year. 

Today she's enjoying the arcade and wants shrimp for dinner. She gets pretty much anything  she wants today. 🙂

As usual we will do our best to keep everyone updated tomorrow. 

Thursday, May 18, 2023

Surgery #16 scheduled

Well, we finally have a surgery date for June 9, 2023. In this surgery they plan on going up through her nose and making the hole into her frontal sinus bigger in hopes that everything will be able to drain out when she gets a cold or anything. Right now we think that the hole is just too small and the mucous is so thick that nothing is able to drain and so it just collects up there and eventually turns into a big infection. We really hope that this surgery is the solution and we won't have to go into the next step which is a pretty big surgery. Sucks that we will be starting her summer off with surgery again, but we hope that it's a short recovery.
 We go back on May 23rd for a check up with ID and she has an appointment to meet and talk with the surgeon that day too. She is still the same as she was a week ago with her tenderness in her forehead and the pain in her muscles. I even started marking the area on her forehead to see if it got smaller or bigger. It did get bigger but has stopped and has just been the same for a little while now. We still  don't know what is going on with her muscles, I'm just hoping it is an inflammatory response from her body battling this infection and once we get it all cleared up the muscle pains will go away. But only time will tell on that. 
 She is still being a little rockstar and tonight she did her nasal rinse all by herself!!! 
 There are still 10 days left of school so we are still going hard with all of the end of the year activites.