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! 

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. 

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. 

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.

Someone messed up 5/9/23

We have had a very long 2 days of check ups. We started yesterday with an appointment with her ENT. Everything looked stable from his standpoint and we are just waiting for a surgery date. He thought things were in motion with the ENT surgeon but was going to touch base and make sure everything was still a go and to get her on the schedule. 

 

Today, she started off the day early with her opthlamologist. Everything looks good but it is time to get glasses. She is not happy at all about this. But we were able to find a place in network that sells the tomato glasses which a lot of Apert families use because they will fit our kids unique facial structure. She picked out a blue and purple frame, so hopefully she will be a little happier about it when she gets them and realizes that she can see better with them. 

 The second appointment was with her dentist and she got a cleaning. Glad to report she has no cavities! YAY something going right in our lives! She does have permanent teeth coming in under some primary molars. We hope that they shift and go into the spot we made by pulling some teeth about a year back, but nothing we can really do about it if it doesn't.

 Her third was with pulmonology. Everything looks good with her but she will need a sleep study/titation study to make sure she is on the correct level for her cpap. They are booked out through September of course so that will be a little bit, unless we can fit into a cancellation. 

 The fourth and final appointment was a follow up with ID. She examined her and we talked about everything. She then mentioned that we're on augmentin through May 13, and I said wait a minute...WHAT? Come to find out they wanted her on 4 weeks of augmentin but someone, somewhere, somehow messed up and only prescribed her 10 days worth. SO NO WONDER HER INFECTION IS FLARING BACK UP!!!! I was not very happy...she's been in the ER twice in the last 10 days, how could they have not noticed this?! Someone really dropped the ball and it could have been really bad for Braylee. This kind of infection is not something that you mess around with. They refilled her prescription and she will be on augmentin for the next 3 weeks. Hopefully this does the trick and gets her to surgery. We stll have no answers to her muscle pain but we just have to keep a close eye on it and hope it resolves itself. She goes back in 2 weeks for a check up and labs will be done next week if she isn't improving or getting worse but we can wait until we go back down if she is improving. 

 A lot to unpack tonight but the pit in my stomach has subsided for now. Per usual my mom gut was spot on, even though sometimes I would take it if it was wrong. Just another reminder that following your gut is always best.

Update 5/3/23

We had Braylee in the ER in SLC today. For about 8 days now she has had these weird muscle pains that started in her right leg and are now on her left leg, calves, back, neck and arms too. We came in on Friday 4/28/23 and she had labs and X-rays and everything looked good. Fast forward to Monday night 5/1 and I was doing my usual assessment and feeling her forehead. She started complaining that it hurt to touch in the area where her Potts Puffy Tumor was. She hasn't complained about pain there since before she got discharged. I called ID  yesterday and they wanted us to bring her back in for an assessment and labs again. We've been in the ER for 7 hours and all they did was run one set of labs.🤦 Might be the longest we've ever been in the ER. The results are still within normal range. No significant sign of an infection. So they are sending us home.  My gut is telling me that there is something else going on but I guess we're just going to have to wait and see if she gets any swelling or headaches. And we still have no answers on her muscle pain. We'll come back for her scheduled check up on the 9th and go from there. Super frustrating but glad to be going home.