DISCHARGED!! 11/23/22

Good news,  we're finally getting out of here!! Dr. Schmelzer came around 3 p.m and he ended up putting 5 staples in to close it up. He didn't want to suture it afraid that there was still some swelling that could make those pop and he also didn't want to wait a few days for the swelling to go down afraid that he would lose all of the skin that he brought up to close it. So this was the next best option. He's 90% sure he got it closed, it was really hard to see with the blood and everything since we were just bedside.  They gave her some Ativan to help calm her nerves but that didn't really help so then they gave her some morphine but that didn't really help her calm down either. It took about 2 hours to get back to her normal self and she doesn't remember a thing. So that is good! So glad we'll be home for Thanksgiving tomorrow. Hopefully when we change her head wrap on Friday everything is looking good and we'll have a good report to report back to him on Monday.  Thanks for the support. Our tribe is amazing as always!! 

A little setback 11/22/22

Well, sadly we are going to be in the hospital at least another night. 

Things were looking so good for us to go home today. She was feeling good, eating, and drinking. Then we took her head wrap off to change the dressing and I noticed that the trouble spot was opening back up a little. I immediately sent pictures to her surgeon, Dr. Schmelzer. He was busy with patients up in his office in SLC all day so then he called a fellow surgeon that is down here that we all trust and he came and checked it out for him. He recommended we wait a couple days until the swelling goes down and then we can put a stitch or 2 back in to close it up. He let Dr. Schmelzer know and so now Schmelzer will  come down in the morning and check it out and decide what we want to do. 

We (including Schmelzer) are all heart broken and just super frustrated. Braylee is not happy and super sad to be staying another night and I really hope it's an easy fix. I don't know if we can handle telling her she's going back into the OR again right now. 

It's just not fair. Send some happy thoughts and prayers her way. We need to catch a break somewhere. 

Picture warning ⚠️⚠️....

Pictured below are pictures of her incision. First from the OR yesterday that Dr. Schmelzer took and it looked perfect and then today. 

Surgery complete 11/21/22

She is out of the OR and up in her room for the night. Everything went great, her surgeon showed us pictures and it looks really good.  He wrapped her head to put some pressure on it to hopefully keep it from swelling too much and keep the drainage under control.  She'll wear this for 12-36 hours most likely more towards 36. We'll stick to our post-op plan that we all discussed and hopefully this will be the last surgery for awhile!! The hospital pediatric unit is completely full of RSV and flu patients so they have a whole different unit set up for all of the surgical pediatric patients. Which I'm super happy to try and keep her away from those germs! She'll hopefully be able to go home tomorrow around lunchtime. Thank you everyone for your thoughts and prayers! 

Surgery #15 underway

Braylee was just taken back into surgery. The procedure will take around 2 hours. Just never gets easier seeing her wheeled away. Please pray for our baby girl and her doctors. 

Surgery #15 scheduled

Well this is not the post I was hoping to write. Unfortunately Braylee will be heading back into the OR on November 21. There is still a very very small part that isn't closing. Her skin is so tight and thin he can't just squeeze it together and suture it up. So he needs to open her back up and pull skin up from the back and rotate it over that spot in order to get the skin he needs. He will be putting in permanent stitches and we'll take them out 12-14 days post op and then start her clobetasol cream to keep her autoimmune response from opening it back up. We'll start it earlier if we see her head starting to scab up and react. We're heart broken that she needs another surgery but it just can't be open any longer. It's just not fair and this sweet girl needs to catch a break. 

PICC is out!! 11/3/22

Man oh man did that 6 weeks go by fast!! We got the all clear yesterday to pull her PICC, so all her labs have stayed consistent and in the right range these last couple of weeks  So today we luckily just had to go up to our local clinic to get it pulled. She did awesome of course. 

We had started to notice that the area where she had 2 stitches in to hold the PICC in place was starting to look a little red and scabby. We're assuming it's her autoimmune reaction to the stitches just like her head. So now we can start to put the clobetasol on it to help it heal. Kind of crazy but I'm glad that we know how to help it. 

I talked with her plastic surgeon about her head yesterday and we still aren't quite sure if it's closing correctly but we'll go visit her plastic surgeon next week and see what he thinks. We were suppose to kind of have an idea if she needed to go back into surgery before we pulled the PICC but, it was getting old and getting hard to get the blood draw back which is how you tell if there's a blood clot in the line. So we thought it was best to go ahead and pull the PICC instead of risking her getting a blood clot.  There's going to be a few decisions we need to make if he thinks it's not progressing in the right direction. 

We'll keep putting one foot in front of the other and celebrate one victory tonight!!