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!!

One Year Later 10/21/22

A year ago today if you would have told me that we would still be dealing with post -op complications, I wouldn't have believed you. But here we are 365 days later and her incision is still slightly open but we're very hopeful with her progress. 

Back in July a fellow Apert Mom messaged me that they started a new steroid cream, called clobetasol. This family  has been dealing with the same incision problems for just about as long as we have.  They had seen huge progress with this so they wanted to pass it along. So I took that to her surgeon and he said it was worth a shot. We saw an immediate improvement about a week in. It took until about a week after this last surgery in October and all of her scabbing is gone!  So, basically what we figured out is her body is having an autoimmune response to the stitches. It's trying to reject the stitches and scabbing up in reaction to that. So now any time she starts to scab a little or when she has future surgeries we just put a little cream on and it will knock it back down. 

While we were in the hospital this last time her plastic surgeon had us consult wound care about her incision not closing back up and see if there was anything more we could try. They mentioned medihoney, which we have tried with no success. So then they suggested we try Venelex cream. This basically stimulates the capillaries and promotes skin growth. We have seen a big difference in the size of the wound. I'm not wanting to jinx ourselves so I'll wait to say certain words until we know for sure. Her surgeon wants us to make a decision on whether it is moving in the right direction or if she'll need surgery to close it back up again before she gets her PICC out at the beginning of November. 

We are so very thankful for our Apert family, it's such a huge life saver to have access to others that are going through the same thing as you and can help give advice. We'd be lost without them! 

Update 10/16/22

 I'll start out by saying that everything is going good with the PICC at home.  Braylee had her 2 week post-op check on 10/13 with Infectious Disease and ENT  and everything is looking great.  She has labs drawn at home by her home nurse every Monday so that we can keep an eye on her numbers to make sure everything is moving in the right direction.  As long as everything is still going good then her last day for antibiotics will be November 2nd and her PICC will be removed shortly after too.  These last 3.5 weeks have gone by faster than I thought they would.   

This past week Braylee got asked to join our home town varsity volleyball team. They did a big slideshow about her that was so sweet and made us all tear up.  She got to sit on the bench and be a part of the team.  Her favorite part was giving high fives to everyone when they checked out of the game and came back to the bench. She smiled so big every time she would get a high five.   Everyone was so sweet and made her feel so very special, even the opposing team brought her a basket and gave her high fives before the game started.  It truly was amazing to watch and made our hearts burst with happiness.  She can't wait to go back and do it all over again this next Friday. 

I've said it before and I'll say it again we really live in the best community ever!!  

Discharged 9/27/22

Holy moly was this a crazy day. They have been trying to get everything coordinated with home health all afternoon so that we could get discharged today. At one point we were going to be good to go after her 6 pm meds and then the next thing I know they are saying that it's going to be the morning because home health couldn't get ahold of the pharmacy to confirm that they will have her meds by tomorrow. We were all pretty down and then I got a call from the Rock Springs IV Center and the fax he got was really confusing so he needed confirmation on the med and he confirmed they will have it tomorrow.  I run down the nurse, who then frantically runs down the discharge planner to get ahold of this guy. Thankfully everyone got everything figured out and we are on our way home!! 

She will be going home with an oral antibiotic and another IV. She will have these for the next 5 weeks. Hopefully they do the trick and keep killing these bugs. 

The UMPS care charity came and brought a ton of build a bears, so Braylee got to go do that this morning while we waited. She chose a monkey and the Incredibles costume. Surprise she named him Flash. And she of course got to go back to the playroom. 

We're so happy to be heading home where the true healing happens!! Thanks everyone for the gifts, texts, and messages. We'd be lost without our tribe!! 

Hospital day #6 9/26/22

Oh another day in the hospital. It's sure getting interesting trying to keep her entertained. She is still loving the playroom so at least we haven't worn her out on that. She did some multiplication today and reading. Along with puzzles, movies, and games. 

So there were 2 more organisms that popped up on her cultures today, bringing us to 9 so far. This morning infectious disease (ID) didn't want to send us home until we got all of the sensitivities back. This afternoon we find out that it could be another 3-7 days to get them all back and that's if no new ones show up. The med team is comfortable sending us home on the antibiotics we have going now since they seem to be covering everything. We'll see if they can talk ID into letting us go home. Otherwise we're going to be here for possibly another week. 😭

We're all exhausted and so ready to be home but we'll do what is best for her. 

PICC 9/25/22 Day #5

Braylee is out of the OR and back in her room, getting ready to mow down on a taco!  The PICC line placement went smoothly.  No more blown IV's and having to get new ones!! Hooray!! 

We found out this morning that is not just 4 organisms that have grown on her cultures. Turns out there were 4 organisms that came from the swab in her left nostril and 3 more came from her right. Infectious disease is very surprised with how many they have found. So now we really don't know when we're getting out of here. We're hoping for Tuesday but it all depends if more organisms pop up on her cultures and when we can get the sensitivity tests back on them. 

Just some more hurry up and wait. We went to the playroom again, did some puzzles, and watched shows to pass the time today. 

She was up and ready to do more puzzles an hour and a half after her procedure! Complete rockstar!! 

Update day #4 9/24/22

  

So big bummer but Braylee won't be getting her PICC today. Infectious disease wants to wait the full 48 hours before we insert.  So we're going for tomorrow so that she doesn't have to be NPO all day and not eat. We'd rather be safer than sorry. So we're here until tomorrow afternoon or Monday. 

Her cultures are growing 4 different types of bacteria 3 of which are rare. So they are having to do a sensitivity test on the cultures to see which antibiotics are the best to beat all of them. Of course we can't do anything simple. 🤦

The UMF biker chapter from all of the surrounding states came and held their annual rally at the hospital today. They raise a TON of money for the hospital to provide toys, Halloween outfits, and hospital supplies. It was so awesome to witness. Braylee got to do the drawing for their $1,000 gift card raffle and she got a cool nerf gun! Bonus she got to be outside for awhile!! 

We'll just make the most of these days and keep on keeping on! 

Hospital day 3 9/23/22

Today was a pretty good day. She went for some walks, played in the play room, played the Xbox, and watched some movies

 

She blew her IV so she had to get a new one along with some more blood culture but, she powered through it all and did great. 

As of right now the plan is for her to go back to the OR in the morning to get her PICC line placed. There's a few variables that could delay this,  which are whether another surgery bumps her back or if the infectious disease team decides they want a full 48 hours of her blood cultures coming back negative. The 48 hours is up at 3:40 tomorrow afternoon. If we have to wait then the PICC will most likely be moved to Sunday.  We're still waiting on the cultures to come back too. Once we get the PICC and cultures then all we need is the education for us to go home with it and to feel comfortable with caring for it. So hopefully we can bust out of here by Sunday at least. Below is a picture of where the PICC goes. 

Fingers crossed we can get the PICC tomorrow and one step closer to going home! Thanks everyone for the support and continued thoughts and prayers!! 

Hospital day 2 9/22/22

Braylee woke up this morning ready to rock and roll. Immediately asking to play Xbox and if she could go home today. Sadly only one of those requests could be filled. She told me that she really wished we could go home since it is my (Mom) birthday. Not exactly how I wanted to spend it but I will take her getting better and getting back to herself as my present. 

Her head is feeling and looking so much better! Her nose is a little tender from the procedure but nothing she can't handle.  She is on 3 very big IV antibiotics. Just trying to cover all of the bases until the cultures come back. Which they had started growing stuff already this morning but it was still too early to tell which bacteria it is. So hopefully we'll find out tomorrow and we'll be able to get rid of at least 1 antibiotic. The infectious disease team came by this morning and informed us that she will be going home with a PICC line so that we can administer the IV antibiotics at home and not have to stay in the hospital for the next 4-6 weeks. I'm hoping they can get that PICC line placed tomorrow and then there will just be training us parents to use it and waiting for the cultures to grow and hopefully be getting out of here.  We're so happy that we will get to go home sometime in the near future! 🤞🤞

She went for a good walk earlier and got to go play in the play room this afternoon. 

Thanks everyone for all of the thoughts and prayers! She's not totally out of the woods but she's at least heading in that direction. 

Successful surgery

Surgery went great and he was able to get through her sinuses on her left nostril so she doesn't have an incision!! Best case scenario we'll get to get out of here on Friday or Saturday. He took cultures so it all depends on what that grows and if we need to do IV antibiotics for the next 4-6 weeks because of the infection on her bone. Time will tell. Thanks everyone for the thoughts and prayers!! Now on to healing! 

Surgery #14 underway 9/21/22

She just went back into surgery. Because her left sinus is basically blocked by bone her ENT will be making a small incision above her left eyebrow, flushing out the infection and placing a draining tube that will stay for a couple days to make sure we get all of the infection out. They will also try and open up her sinuses more on both sides, if they can access it through her nose.  Still up in the air on how long we will be in the hospital, all depends on what they find. They anticipate it to take 1.5-3 hours all depends on what they end up doing. Please pray for our baby girl and her doctors. She's the bravest girl we know! 

Admitted 9/20/22

Well I was hoping the next blog I did would be a happy one. I'll start off by saying her incision did open back up but it is healing now and really close to closed. Slowly but it is getting there little by little. More on that in another blog, sometime. 

About 19 days ago Braylee was complaining her head hurt and when I took her cap off you could immediately see the swelling on her forehead. I took her into the pediatrician office (we didn't get to see her primary that knows her so well) and we started treating her for a sinus infection. She got on a 10 day dosage of amoxicillin. She got better, all of her swelling went away and she looked great. Well the night of the 19th she started complaining of her head hurting again and sure enough, her forehead was swollen, again. Took her back to her primary pediatrician, he voiced concerns of how much swelling there was. He was afraid she could have a bone infection. So he sent us for an MRI. Results from the MRI conclude that she has a very serious sinus infection that has caused an abscess on her forehead and the infection was starting to get in between her skull and her dura (the thin layer that covers the brain). So we got back home and started to pack for the hospital. We got her about 9:30 last night. 

She has been admitted to Primary Children's Hospital in Salt Lake City. She needs IV antibiotics and she will be going into surgery sometime this morning to clean out the infection. We will be here for awhile since the infection is in her bone. We'll know more after surgery today. 

7 long months later! 6/29/22

Let me start off saying that after 7 months the trouble spot is FINALLY closed and looking great!! This is the best it has looked since October!!  HALLELUJAH!!! 

Now I'll back track. So as soon as we see Braylee up on the pediatric floor after her surgery, she had 2 egg sized lumps on her head. When feeling them they felt like they had fluid in them. We asked the doctor on the floor if this was ok and he assured us yes, it'll eventually go down. Now this doctor we have only dealt with 2 times in all of our time at that hospital so we didn't know him very well. Well fast forward about 4 days and the fluid, which was blood started to drain out of the trouble spot. Her surgeon told us to wrap her head and it will help everything go down. On her one week post op he walks into the room and immediately asks why her spot is all wet and crusted. Come to find out the pediatric doctor had never told him it was that much fluid. If he had then her surgeon would have immediately come up and drained it with a needle. He was very upset they didn't call him. Now we are all very nervous about what the trouble spot is going to look like once it dries up and we can finally take a look. We kept in constant contact about it's progress. About another week goes by and we are on our way down to Dallas, TX for the Children's Craniofacial Association Retreat and we noticed the brand new incision on the back of her head looked like it's separating. I immediately sent pictures and he assured us that we were still ok to continue on our trip and it didn't look very concerning to him. Then finally on the trip her trouble spot stops draining. We made a plan with him to come see him when we got back so that he can clean it up and we can look underneath the scabs. So last night she took a shower and I assessed her incision and it still looked angry. We get to the appointment today and he walks in with all of his supplies. He starts to gently scrub and try and get the scabs to come off but the big spot just wouldn't budge. So he finally said well guess I'm digging in to see because I've been losing a lot of sleep over this and I just need to know... yep Me too... Me too. So he cuts the scab off and voila it's a closed incision!!! Now that we had that out of the way we started talking about our other concerns and he starts looking and yep she is starting to have a reaction to the stitches. She has a very small strip down from the trouble spot that should close on its own because it's healthy and so close together. Moved onto the back and sure enough same thing but this one is very angry. He checked it out really good and there's no infection, it all looks healthy it's just a little pissed off. So we are giving these spots around 10 days to do their thing and heal. If need be he will throw a couple stitches in, just a different type and it should all be good. So  as usual it's been one heck of a rollercoaster but after today we all feel a little relief and can maybe see the light at the end of the tunnel. Phew, sorry l rambled on, that was a lot of information😂. 

As I mentioned before we got to attend the annual CCA retreat. Here we meet people some with Apert and others with different syndromes or craniofacial differences who are going through some of the same struggles, surgeries, and emotions that we do every single day. It's so great to be able to talk and have someone who can relate and possibly give you advice. We made so many amazing friends!! The girls were super sad to say goodbye. It is always an amazing experience and we can't wait to go back next year! 

I'm going to post pictures below so if you don't like blood or anything then don't scroll any farther. 

3 days post op

6/28/22

6/28/22

all cleaned up and closed!!!