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.