10/2/23

Well, on the way to school this morning Braylee started to complain that her head felt weird. So we got to school and I looked and the top of her forehead on her hairline was swollen and very tender to the touch. She said she didn't have a headache, didn't hit her head on anything.  I sent her in to show the nurse so she could see if it got any bigger within the hour. I just ended up going back into town to reassess her and determined she needed to be taken for imaging to be on the safe side. She wanted to stay at school until I talked to her surgeon and got everything packed. I sent her surgeon pictures and he agreed that she needed to be seen. We headed out and in the drive Braylee remembered she did hit her head the day before. We decided to keep going because the swelling was so significant just to be in the safe side. We arrived in SLC around 3 pm. Her swelling had increased a little since this morning. She ended up getting blood work drawn and a CT. 

 Everything came back good on her blood work and the CT showed that it is a hematoma and all of her sinuses looked great. We're so relieved and only Braylee would have a big hematoma from hitting her head. We need to keep a close eye on it and make sure it goes down but we get to go home!! Never been so happy for a hematoma!! Always keeping us on our toes! 

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!!

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. 

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. 

DISCHARGED!! 4/19/23

We are out of here!! We still don't have a surgery date but they will be calling here in the next couple days to schedule that. 

She of course started to grow another organism on her culture and ID has never heard of it. So of course she grows the interesting things.  It is related to ones they know so her oral antibiotic should cover it too. If they find that that changes then they'll let us know. 

We're so happy to be heading home and really start to heal!! 

Hospital day #4. 4/18/23

Well another day in the hospital has come and gone. Her CRP levels went down to a 4, so we're getting there. We consulted with her neurosurgeon this morning and he'll be at surgery of they need him but he doesn't think he'll be needed. 

ENT came by tonight and it is sounding like surgery won't be this week. We'll get discharged hopefully sometime soon and then come back when the infection has cooled off some more.

 ID is waiting for the sensitivities to come back on the cultures so we can see which antibiotics will work the best. We're hoping they'll let us leave tomorrow but it could be Thursday before we get out of here. We'll find that out in the morning. 

She went down for a brain MRI today just to double check that no infection has made it's way into her brain. No one has told us the results from that so we're going to go with no news is good news. 

We went to the school they have here at the hospital and got her a 4th grade workbook so she got to do some math today, she wasn't the happiest about having to do schoolwork. Along with all of her usual activities. 

Thank you everyone who has sent gifts and money for meals. We can really feel the love and support and greatly appreciate it. We have the best village!

Hospital Day #3. 4/17/23

Well another big day with a lot of information and a lot to unpack. 

I'll start off by saying she didn't have surgery or get a PICC today. Her CRP levels came down to 6.7 so they are trending in the right direction. Her swelling and redness were better this morning but have increased during the day. 

During rounds ENT said that they consulted with one of the ENT's over at The University of Utah hospital that specializes in sinus reconstruction.  He thinks the best approach is to go in and modify her sinus structure and open it up more so that things will be able to drain and she hopefully won't ever get this again. This is a much bigger surgery than we anticipated but if it will fix it in the long run it will be worth it. He wants to let the infection cool down some more before he operates so it will be sometime this week, maybe around Wednesday. This surgery is out of Primary Children's wheel house so the surgeon from the U will be doing it. They will be consulting the neurosurgeon we trust just in case he thinks he needs to be present at surgery. We have kept her plastic surgeon in the loop (he doesn't have privileges here) and he has some questions for the neurosurgeon, so tomorrow we'll get those answered. 

She will hopefully be able to move to oral antibiotics tomorrow but that could all change if new organisms grow. Also, ENT thinks there's a chance we don't have the full picture of the infection because we haven't gotten a culture of the abscess in her forehead. So there's a chance the antibiotic plan could change after surgery. 

She did great most of the day, not needing any meds but after playing pretty hard at the playroom today she had a bad headache and wasn't feeling very good. We got her some ibuprofen and 30 minutes later she was her happy, bubbly little self. 

Tomorrow will be just another day in the hospital, playing Xbox, painting, watching movies, and anything else we can do to keep her comfortable and entertained. 

Hospital Day #2. 4/16/23

She has had a pretty good day, still some headaches off and on but they are still manageable with ibuprofen and Tylenol. 

First thing we found out this morning was that her CRP which is how they measure inflammation in the body had made a huge jump up to 8.6. The normal range is between 0 and 0.7, yesterday she was at a 5.6. With these results and the fact that her swelling has increased they decided to put her on the OR schedule for tomorrow 4/17. They could cancel, if by some miracle her numbers and swelling drastically change. Their plan is to go in and do the exact procedure they did back in September and go through her nose. It is still up in the air on whether she is getting a PICC or not. Infectious disease is hoping we can just go home on oral antibiotics, just depends on what her cultures grow.  Another factor is she is already onto her 3rd IV and if she keeps blowing them, then a PICC would be a better option. We can always pull it before we leave if we don't need it but putting one in can also lead to more scar tissue and harder access down the road since she is a very high risk for this to happen again. So many decisions that need to be made. We still don't have a for sure start time for surgery yet since she is an add on but we're hoping she'll go before 4 so that they can do the surgery and place the PICC if she needs it. If they can't get it coordinated for both and she does need to get the PICC she will have to go under anesthesia 2 times tomorrow, which is not ideal. So cross your fingers and toes that everything lines out perfectly. A little bit of luck thrown our way would be great. 

She got to go play in the play room today, played Xbox a ton in her room, painted a little bit, and watched some shows. Tomorrow is going to be a lot of distracting her from her hunger. Could be a long day. Just keep in keeping on. Just one day closer to going home, whenever that is. 

Hospital day #1 4/15/23

Well today was a day of just hurry up and wait. We found out pretty early on that she wasn't going to be going into surgery. The infection mostly from last time has eroded away her bone on her forehead that sits in the front of the sinus cavity and also the bone that sits between the sinus cavity and her brain. It would be really risky to try and go in and clean it out now because it could push the infection into her brain. We are giving the antibiotics 48 hours to do their job then she'll get another CT and then they will reevaluate the plan. We talked about putting in a PICC so they started to put that plan in motion but infectious disease needs her blood cultures to come back clean of infection for 48 hours so we have to wait until Monday or Tuesday and hopefully nothing grows on that. Then infectious disease (ID) mentioned they might need a biopsy so they can nail down what bacteria(s) we're dealing with. The ENT and ID talked it over and decided to just try a culture from her nasal cavity. At this point it's already 1 pm and ENT finally came down to do the culture and let her know that she could finally eat and drink. She had to order food before the procedure, the poor girl was so hungry. They gave her some happy juice (versed) and went in her nose with a scope at the bedside, it was really tight because her nasal cavity is small and blocked by bone in some places. They got a swab and we are crossing our fingers that it was good enough to get good cultures off of. 

She is on 3 very big antibiotics; flagyl, ceftriaxione, and vancomycin. Vancomycin is very hard on veins and will just "eat" them away. This causes IV 's to blow and you need to start a new one. Her IV lasted a whopping 23 hours before she needed a new one. She handled it like a champ and hopefully this one will last longer. 

Her face has continued to swell a little throughout the day so we're keeping a close eye on that. Hopefully that will start to go down tomorrow. 

A funny little story after she got cultured. As she was eating her hot dog she's so super happy to be eating and add in the happy juice she was on cloud nine!  As she's eating she holds her hot dog in the air and yells "I LOVE HOT DOG". Just living her best hospital life at that moment. 🤣 we got a few chuckles out of her happy juice. 

Admitted 4/14/23

Well I kept telling people that I needed to make a post because she's been doing great... but here I am posting when she has been admitted to the hospital. 

Braylee had a cold around 2.5 weeks ago and her nose has just continued to run. She complained of a headache a couple times earlier this week but didn't want anything for the pain. She woke up this morning and was in a lot of pain, yelling at her sister to be quiet because her head hurt. And if you know Braylee you know that is completely out of character. I had already been on high alert watching her forehead so I asked her where it hurt and she pointed to the spot. Instantly triggering my PTSD from last time. I push back her bangs and see swelling and redness, I softly press on it and she gasps and jumps back. Called her pediatrician and got her in to be seen. He evaluates her and agreed with me that it was presenting just like last time with the Potts Puffy Tumor that she got her PICC for back in September. He told me just to get to SLC so we headed home to get Jeff and pack a bag. We got to the ER here at Primary Children's at about 7:30. She had labs drawn and a CT with contrast and it was officially confirmed that she has a Potts Puffy Tumor again. 😩

Her ENT isn't on call tonight so talking with the on call ENT we are going to start her on 2 of the big antibiotics she was on before. He is consulting with her ENT and the on call surgeon to see what is the best plan moving forward. We'll know more in the morning. 

I guess the universe just decided that 3 months of quiet was enough. So here we go again, we'll power through and do what we have to do. Thank you everyone for the prayers! Keep them coming! 

1 year 2 months 22 days and 5 surgeries 1/12/23

Finally after 1 year 2 months, 22 days and 5 surgeries Braylee's incision is closed!!! We have been waiting to update until all of her scabs fell off. Tonight was the night that it finally happened. I will be honest I wasn't expecting to be closed. The scab on her trouble spot fell off a little over a month ago and that was closed but there was another spot down her incision that we could see just a little bit of and it looked partly open. We let it be and I rotated her clobetesol and venelex ointments to try and see if that would help. Thankfully it did!!! She can officially stop wearing her hats but I don't think she will for at least a little while. Her hair is still short on top and lets be honest that's been her life for the last 427 days, it's her style now. Totally up to her for when she is comfortable enough to take it off. We are going to just sit back and enjoy this next amazing step and 2023 is starting off GREAT!!!