update 12/1/21

So we're over 2 weeks post op from her second surgery and things are going alright. She had some drainage around Thanksgiving that had us concerned and a few spots that are still looking possibly open. He had us come in today (12/1) on our regular check up appointment with the possibility of , if it is still open or he thinks the infection wasn't clearing then we would go into surgery this afternoon too clean it out and pull her skin up to try and give her more to get it to close properly. After looking her over he does see what I'm concerned about but it's still hopeful it will close on its own and the infection was looking like it was clearing up. He gave us 2 options and all of us had to be on the same page before we left about our decision. He said we could go into the OR today and clean it up and pull the skin up or we could wait it out another 2 weeks on antibiotics and wait and see what happens and what it looks like after the scabs start to come off. If things aren't closing by then, then we will go into surgery.  We all agreed on waiting.... I'm not putting her through another surgery unless it's absolutely necessary. 

After being home for 44 days she FINALLY gets to go back to school tomorrow.  With her

 being on antibiotics and if she wears her hat the entire time to protect her incision he was comfortable with letting her go back. We will also be taking in a bike helmet for her to wear in PE when they play with balls or anything that might hit her head where she doesn't have bone. Just another added layer of protection. She is so incredibly excited but also nervous to go back! 

This has been a very rough, stressful, and emotional recovery but hopefully we are about on the other side of it. Just a couple more weeks hopefully! 

DISCHARGED!! 11/19/21

 

We are out of here!!! Her  cultures grew a Coagulase-negative Staphylococci, it's a skin staph. It's sensitive to the Cipro that he put her on on last Friday and that's why it took it little bit to grow. They think there was a pocket that it couldn't penetrate and that's why it was still draining so now that he has flushed it the antibiotics should work. He's putting her on augmentin for 2 weeks because the Cipro is controversial in kids and since we have other options it's not worth it to risk. We are so happy to be getting out of here!! 

Day 4 11/18/21

Today has been a good day. She's been her normal sassy, funny, cute little self. We found out this morning that her cultures did start growing. As of right now all we know is it's a gram positive cocci, most likely a type of staph.  The lab was letting it grow more today so that they have a bigger sample to test and then they have to run a sensitivity test on it to see which antibiotic works best on it. So we are still hoping to get out of here tomorrow but depending on how long the tests and everything take it could be Saturday.  But we are so happy that we have answers and know what we are dealing with! 

She got her head wrap taken off today and that turned her attitude totally around, that thing was really making her mad. Now she gets to wear a hat to try and keep it clean, dry, and so it doesn't get irritated. Luckily I found the perfect kind at a sporting goods store here, light weight and breathable.  Her incision is still wet on that one spot and I noticed when I got to do her hair tonight that 2 more spots we're looking a little wet. So we really need those sensitivity tests to come back quick so we can get on the right antibiotics. 

We went and played more Jenga in the playroom, played with the trains and she organized the play kitchen because she just couldn't stand it anymore. 😂 And she got to video chat with one of her best friends. So it has been a really good day!! 

Hopefully tomorrow I'm updating that we're discharged! 

Day 3 11/17/21

Last night and today have been so much better!! She slept from 2pm- 8 am this morning getting 16 hours of sleep!! Just what she needed to get out of that fog. She woke up, ate some breakfast and then went and played in the play room for a couple of hours. In such a better mood and getting back to her normal self. 

As of this morning her cultures haven't grown anything. This is good and bad news. Good that she doesn't have a raging infection but we also don't know what we are dealing with that's causing her drainage and her incision not to heal. Her surgeon comes back to the hospital tomorrow so we will figure out what he's thinking then. They are still watching her cultures through tomorrow so we'll see. 

We're just so happy she has turned a corner and she's counting down the days until we get out of here. Really hope that's Friday or this girl is going to be absolutely heart broken.   

Until then we'll just keep on trying to make the best out of being here. Thanks everyone for your prayers and everything!! 

Day 2 11/16/21

Well last night was an interesting way to start the stay. Her oxygen dipped down into the 70's while she was sleeping (seems to be her thing after anesthesia now) so we hooked her CPAP up to oxygen and it went up and stayed up. Then her blood pressure dropped dramatically. We tried a couple different things but it just stayed low so the doctor order a bolus and in the meantime the Doctor was thinking hard and fast to figure out what to do to get it up, finally after about 30 minutes the bolus brought things up a little, at least into the "safer" zone. Little by little it came up and finally stayed up the rest of the night. We were finally able to get to bed at 1 a.m.

Today has been slow, which is good. She is still in an anesthesia fog. Doesn't want to eat or drink and just blankly watches her cartoons on the TV. 

She fell asleep around 2 this afternoon and has been sleeping soundly ever since. Kind of expecting her to just sleep through the rest of the night and hopefully this will get her out of her fog and she'll be happier tomorrow. 

Meanwhile Jeff and I just sit here and try not to go stir crazy. We ended up buying a Google cast to hook up to the hospital TV so that we can watch Netflix and Disney+ and everything and not have to watch the same Nickelodeon and Disney shows over and over 😂. Saving our sanity a little. 

Hopefully we'll be able to get out of here Friday. Depending on what her cultures show on Thursday we will be going home either with a PICC line to administer IV antibiotics at home or on oral antibiotics. We so hope for the oral. 

Thank you to everyone who has offered to help and/or sent her gifts or brought us food. It means a lot to us. 

Surgery Complete

Surgery is complete and everything went good. He said it didn't look bad in there and he flushed it out really well. He did wrap her up this time just because her skin is so very thin he wants to give it 48 hours to heal and not let anything irritate it. Thank you everyone for your prayers. 

Surgery #11 underway 11/15/21

She just went back. They anticipate it to take around an hour. Best case scenario we will be here  until Friday, at least......all depends on what the cultures show in 48 hours. Please pray for our girl and her doctors. 

A Curveball 11/15/21

So Braylee has been on an antibiotic for 6 days now and he even started her on another one on Friday, hoping it would help. But since she is still draining out of her incision her surgeon wants us to come down to Orem, UT to Timpanogos hospital to be directly admitted and he will take her into the OR at 5 pm to wash it out. We will be in the hospital for several days so she can get IV antibiotics. This is so not what we wanted but we're getting it taken care of before it turns into a really bad infection. Prayers for a successful wash out and that this isn't in her bone. She's pretty nervous about going into the OR again so soon but she's being so brave and strong. 

A little bump in the road 11/9/21

So we have hit a little bump in the road to recovery. We have been keeping an eye on 2 spots on her incision. One of them has been draining for a little over a week now but it hasn't ever really looked like pus and the other just didn't look like it was healing right.  We have been keeping her surgeon in the loop on everything and up until yesterday we thought everything was going ok. But yesterday part of her incision looked like it was separating. Her surgeon said to keep a close eye on it and if it got any bigger then we were to bring her in the next day. Well, yep it got bigger. So I sent more pictures to her surgeon this morning and he told us to come in. I had already packed our bags the day before just in case. We loaded up and headed to Salt Lake City. We arrived about 1:30 this afternoon and he looked it over and thought he could stitch it back together in his surgical suite there in the office. They put some topical numbing cream on her to hopefully help when they had to put the needle in for the local anesthesia. I got to go back with them to help keep her calm and still.  

She did feel the needle in some areas but she was so strong and brave about it. Now here's where things took a little more of a turn. Once he got her all cleaned up and assessed further the first side was bigger than he originally thought so he got that stitched back together with about 10 stitches. He moved to the other side, cleaned it out and immediately said "oh I don't like this at all"...."I'm not sure I will be able to get this closed, now is the time to say a few prayers".  So here I am thinking that we will be heading to Orem for her to go into surgery. He could see a little of her skull but we are very lucky that it wasn't the bone that they grafted  during surgery. If it had been the bone graft it would have been very bad since that "dead" bone wouldn't do well with being exposed and more prone for infection. Luckily after 5 stitches for this tiny maybe 1/8- 1/4 of an inch  hole he was able to get it closed. She still isn't out of the woods yet since this was all most likely caused by her skin being very thin because it got stretched from moving her forehead forward so much. We are just hoping and praying these stitches hold and there's no infection. He did start her on antibiotics just to be on the safe side. If it opens up again she will most likely be going back into surgery for a skin graft since that will be the only way to get it to close completely. Doing this would be a very long recovery. So fingers crossed we don't have to go there. 

She did so great throughout the whole procedure, I mean are we really surprised??!! The girl is a badass!! 

On a good note you wouldn't know she's going through all of this because she is just her happy, funny, normal amazing self. 

We are back home and hoping everything goes smooth the rest of the week and she can hopefully go back to school on Monday, with a lot of restrictions of course. The poor girl misses her friends so much!! 

We are just going to keep on trucking along and try to get this sweet girl 100%. Thanks for all of the prayers and happy thoughts. 

HEADS UP ....I have added the photos of her separated incision and when she was all stitched back up so if you don't like that kind stuff don't scroll past here. 😉

Discharged 10/25/21

You know that corner we were looking for.... well we finally found it!!! She woke up ready to take on the day today!! Ate some breakfast, drank a bunch, went for some walks and didn't throw up!!! Doctor said as long as we were comfortable we could leave today! She still had a tiny bit of swelling but that should subside real soon and we'll get to really see her new look. 

We're staying in the hotel for 1 more night just to be on the safe side since we live so far away and she didn't get discharged until 3 this afternoon. 

We're so happy that we finally got out of there!! She's going to heal so much better not in the hospital without everyone bothering her!! 

Thanks everyone!! 

Day 4 10/24/21

So she woke up acting so much better today. Wanting some chocolate milk, so she got chocolate pediasure so she could get some nutrients too. Her hemoglobin levels this morning were better, so she didn't need another blood transfusion. They still aren't normal but they are at least heading in the right direction. Her nausea is better but still not gone. She got her IV in her foot out today so she could go for some little walks. She's still really weak so she isn't going far. Hopefully tomorrow. 

Her swelling has really decreased today, it is pretty crazy how fast it has started to go down. She's still sleeping a lot, which isn't a bad thing since sleeping helps you heal. We just have to make sure to give her some fluids every hour. 

Unfortunately I think we will be here until at least Tuesday now, hoping to turn that corner tomorrow. But we will take it at her pace and listen to what her body needs to heal. 

Thank you everyone for all of the prayers and happy thoughts. Keep them coming. 

Day 3 10/23/21

Well we've hit a little bump in the road.  She spiked a fever around 2 in the morning, which is expected with this type of surgery, but her blood pressure was pretty low and her oxygen kept dropping into the 60's and 70's (you don't want anything under 90). So we gave her some oxygen and that brought it up. Her blood pressure still wasn't great but we just kept an eye on it.  Her swelling has increased (as expected) but her eyes haven't completely swollen shut, so she is still able to see when she is awake. We'll take it!!   She's still throwing up and can't keep anything down even with zofran on board. 

The doctor ordered a blood draw this morning and those came back with her levels being low. So she needed a blood transfusion. The doctor was really busy today so we didn't get that started until 6 pm. We're hoping this helps her turn the corner and she starts to feel better. 

Thankfully throughout all of this her pain has been good to handle. She has only had morphine twice today and that was only because she couldn't keep the Motrin and Tylenol down. We have switched to the pill form instead of liquid and that seems to be the trick to keeping them down. 

She still amazes us with her strength!! 

Out of the PICU!! 10/22/21

Braylee had a semi rough night. Her pain was totally controlled so that was good but she was throwing up all afternoon and up until 3 a.m. We finally got back to sleep around 4 this morning and she and I slept good until about 8:45... Minus their hourly checks. Her nausea is finally subsided... Knock on wood. Her swelling is still very minimal, everyone is so surprised at how little swelling she has. We hope this continues throughout today. Otherwise we are just trucking along, trying to stay on top of pain and keep her swelling down. 

She was moved to the Pediatric floor around 1:00 this afternoon. Hooray!! 

Successful surgery 10/21/21

Let's start out by saying we ABSOLUTELY LOVE this hospital and it's staff!! They are so caring, nice and just all around amazing. 

Braylee did great during surgery. Her surgeon is really pleased on how things went. He showed us pictures of mid surgery and let me tell you, seeing your child's brain and inside of the skull is very tough thing to do but it was also very informing, especially when you are a visual person. So what he ended up doing was more of a cranial vault advancement. So they basically cut the front part of her skull off in one big piece and then placed it on top of her brow, moving the forehead forward. Doing this he didn't have enough bone to fill in that gap on the top of the back of her head, so she has a gap going across her whole head now. He anticipates this to fill in but if it doesn't he will fix that when he does the mid-face. Important thing is he moved her forehead forward and got all of her holes filled with her bone so that he can safely attach the Halo device for her mid-face surgery. He also put some bone on the top of her nose to help fill that out more. She did have some indents on her dura (the membrane covering her brain) so this means she had some pressure on her brain, that none of the CT's that we had done showed. Something that I was kind of afraid of after hearing multiple stories of kids having pressure but showing no signs and not showing up on a CT. They only found it during surgery. So there is that, but she should have plenty of room in there for her brain, for now. 

She is in the pediatric ICU tonight and will hopefully get moved to the pediatric floor tomorrow.  She has only woke up for a couple minutes and then gone back to sleep. Hoping she can just keep on sleeping through the night. She will most likely swell more tonight and tomorrow and then it will start to decline. 

The change is huge!! It's really hard to put into words.... From the brow down she still looks like the same ole Braylee but when you add in her new forehead, it puts a little twist on it. 

Getting all of the Braylee's Battalion shirt pictures today has really brightened our day!! Can't wait to show her all of them!! 

Thank you for all of the prayers and happy thoughts. Keep them going as she's still not totally out of the woods until we see what her swelling does but she's definitely moving in the right direction. 

Surgery #10 underway

They took her back about 7:35. They anticipate it to take about 6 hours. Please pray for our baby girl and her doctors. They are doing more of a cranial vault advancement than an FOA hoping this will lead to less surgeries in her future  She was so brave going back. 

Surgery #10 tomorrow 10/21/21

Surgery#10 is tomorrow 10/21/21. Start time is scheduled for 8 a.m.  They will be doing a frontal orbital advancement (bringing her forehead forward) and filling in holes on her skull (pictured below). These need to be filled in so the halo device that she needs for her future mid-face surgery has a place to put the screws to hold in place. Still a very risky surgery since they will have to cut parts of her skull and put it back together like a puzzle with plates and screws.

 Luckily they won't shave her head this time, I just have to part her hair on her old cranial scar and braid it to keep her hair out of the way. They will shave along the scar.  We've made it down to Orem,UT since we changed surgeons she will be having surgery at Timpanogos Regional Hospital. She rocked her blood work this afternoon and no COVID test is needed so she's ready to rock and roll in the morning!! I'll update as I can. Keep those prayers and happy thoughts coming!! 

Unexpected hospital stay 8/10/2021

Well this girl has sure put us through the ringer the last 24 hours. 

I'll start from the beginning of the incident. So on Saturday the 7th while we were out camping, Braylee went on a small bike ride with her sister Maddee and friends and ended up wrecking coming down a hill. She has a pretty good abrasion on her side, her knee and elbow are all banged up, and she said her head hurt but otherwise visually she looked ok. We get her back to the camper and get her cleaned up and she's complaining of everything hurting along with her head. Her helmet only had a little scratch on it so we decided to give her some meds and monitor her for any other signs of a head injury.  She slowly started to get better that day only being sore.  On Sunday morning she wakes up feeling great and ready to play. She went tubing and had a blast. Monday she did great too. 

On Tuesday she woke up with a black eye and I had asked her if she hit it on something and she said no. A couple hours go by and it finally dawns on me that it was from her bike wreck. We look at it closer and she has a dark yellow bruise across her right side of her forehead and down her nose. This sets off alarms for us so I ended up taking her to her pediatrician in Jackson and he sends us for a CT of her head.

 We decide to waste some time around town until the results come in. We get some ice cream and then right as I ordered her dinner at Wendy's her pediatrician calls and says that she has a small skull fracture above her right eyebrow and there are some air bubbles under her skull that are a little alarming so he tells us to head to Salt Lake City and to have her be NPO (nothing by mouth) incase they need to take her into surgery. She was not a happy girl about not getting to eat. So we drive back to Pinedale to pick up Jeff and then head to SLC. We finally arrived here at 11pm last night. 

They get us right back  and then it was a hurry up and wait on neurosurgery. Finally around 1 a.m. we hear from neurosurgery that she doesn't need surgery but she needs to be admitted and monitored the rest of the night. We finally get moved to a room at 3 a.m, and she's asleep finally by 3:15..... talk about a very long night. She slept most of the morning only waking up to talk to the doctors making rounds. It was determined that the air bubbles under and on top of her skull will go away fairly quickly, her skull fracture will heal fast being as it's not displaced and they have diagnosed her with a mild TBI (traumatic brain injury) aka a mild concussion. She had been discharged from the hospital!!! 

She will be on concussion protocol for most likely the next 3 months but we will check in with the concussion rehab specialist in 4-6 weeks and go from there. We aren't sure if her surgery in October is still a go but her plastic surgeon has been updated on everything and will be reviewing her scans and get in contact with us. We are so very glad she had her helmet on, the outcome would have been WAY worse if she didn't!! We're so ready to get home and we just hope and pray that she continues to improve and doesn't decline. Always keeping us on our toes!! 

Happy 9th Birthday and surgery #10 scheduled

Nine years old, I can't believe it has gone this fast! She is seriously one of the funniest kids you'll ever meet, makes us laugh every day.  Still hard to believe that this journey started 9 years ago.  It has been one of the most tiring, emotional, frustrating, and yet amazing journeys we've ever had.  But totally worth it to see her thrive and live life to the fullest! She still loves dinosaurs, Elsa, fishing, snowmobiling, and everything about her tablet.  

This past year she has started participating in Special Olympics.  She did swimming in the spring and her swimming has improved so much! She had a virtual state swim meet back in May and she rocked it!  We just found out that she ended up getting a fourth place,2 third place, and a second place in all of her events!!  We are just so proud!  She had so much fun and can't wait to pick it back up.  This summer she has started golfing and cycling.  She is a little obsessed with golf at the moment.  Nothing slows her down and even though she can't do things the way other kids do, she still figures it out and has a blast.  

On to the not so fun stuff.  Braylee will be having her 10th surgery on October 21, 2021.  She will be having a frontal orbital advancement (FOA) and filling in the holes in her skull.  We couldn't do her midface advancement this summer because she has holes  in her skull where the screws need to go to attach the halo device to her head.  The FOA will be bringing her forehead out to give her brain room and to also fix the indent that she has.  We could have had these fixed years ago if we had been with her new surgeon then but we are with him now and moving in the right direction.  This is a still a very risky surgery being that they have to take part of  her skull off, break it and piece it back together like a puzzle with plates and screws just like when she was 6 months old.  She will be in the hospital for 3-4 days following and then home bound for another week.  Surprisingly her surgeon said she could be ready to go back to school 10 days after surgery barring everything goes as planned.  We of course will take that one day at a time after surgery and make sure she is 100% before sending her back.

We will be selling shirts this time around  that everyone can wear on surgery day to help boost her spirits.  I will post a link when it comes time for those.  

Until then we will keep living life, enjoying the rest of our summer and trying not to worry about the things coming in the near future.