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!!