DISCHARGED!! 4/19/23

We are out of here!! We still don't have a surgery date but they will be calling here in the next couple days to schedule that. 

She of course started to grow another organism on her culture and ID has never heard of it. So of course she grows the interesting things.  It is related to ones they know so her oral antibiotic should cover it too. If they find that that changes then they'll let us know. 

We're so happy to be heading home and really start to heal!! 

Hospital day #4. 4/18/23

Well another day in the hospital has come and gone. Her CRP levels went down to a 4, so we're getting there. We consulted with her neurosurgeon this morning and he'll be at surgery of they need him but he doesn't think he'll be needed. 

ENT came by tonight and it is sounding like surgery won't be this week. We'll get discharged hopefully sometime soon and then come back when the infection has cooled off some more.

 ID is waiting for the sensitivities to come back on the cultures so we can see which antibiotics will work the best. We're hoping they'll let us leave tomorrow but it could be Thursday before we get out of here. We'll find that out in the morning. 

She went down for a brain MRI today just to double check that no infection has made it's way into her brain. No one has told us the results from that so we're going to go with no news is good news. 

We went to the school they have here at the hospital and got her a 4th grade workbook so she got to do some math today, she wasn't the happiest about having to do schoolwork. Along with all of her usual activities. 

Thank you everyone who has sent gifts and money for meals. We can really feel the love and support and greatly appreciate it. We have the best village!

Hospital Day #3. 4/17/23

Well another big day with a lot of information and a lot to unpack. 

I'll start off by saying she didn't have surgery or get a PICC today. Her CRP levels came down to 6.7 so they are trending in the right direction. Her swelling and redness were better this morning but have increased during the day. 

During rounds ENT said that they consulted with one of the ENT's over at The University of Utah hospital that specializes in sinus reconstruction.  He thinks the best approach is to go in and modify her sinus structure and open it up more so that things will be able to drain and she hopefully won't ever get this again. This is a much bigger surgery than we anticipated but if it will fix it in the long run it will be worth it. He wants to let the infection cool down some more before he operates so it will be sometime this week, maybe around Wednesday. This surgery is out of Primary Children's wheel house so the surgeon from the U will be doing it. They will be consulting the neurosurgeon we trust just in case he thinks he needs to be present at surgery. We have kept her plastic surgeon in the loop (he doesn't have privileges here) and he has some questions for the neurosurgeon, so tomorrow we'll get those answered. 

She will hopefully be able to move to oral antibiotics tomorrow but that could all change if new organisms grow. Also, ENT thinks there's a chance we don't have the full picture of the infection because we haven't gotten a culture of the abscess in her forehead. So there's a chance the antibiotic plan could change after surgery. 

She did great most of the day, not needing any meds but after playing pretty hard at the playroom today she had a bad headache and wasn't feeling very good. We got her some ibuprofen and 30 minutes later she was her happy, bubbly little self. 

Tomorrow will be just another day in the hospital, playing Xbox, painting, watching movies, and anything else we can do to keep her comfortable and entertained. 

Hospital Day #2. 4/16/23

She has had a pretty good day, still some headaches off and on but they are still manageable with ibuprofen and Tylenol. 

First thing we found out this morning was that her CRP which is how they measure inflammation in the body had made a huge jump up to 8.6. The normal range is between 0 and 0.7, yesterday she was at a 5.6. With these results and the fact that her swelling has increased they decided to put her on the OR schedule for tomorrow 4/17. They could cancel, if by some miracle her numbers and swelling drastically change. Their plan is to go in and do the exact procedure they did back in September and go through her nose. It is still up in the air on whether she is getting a PICC or not. Infectious disease is hoping we can just go home on oral antibiotics, just depends on what her cultures grow.  Another factor is she is already onto her 3rd IV and if she keeps blowing them, then a PICC would be a better option. We can always pull it before we leave if we don't need it but putting one in can also lead to more scar tissue and harder access down the road since she is a very high risk for this to happen again. So many decisions that need to be made. We still don't have a for sure start time for surgery yet since she is an add on but we're hoping she'll go before 4 so that they can do the surgery and place the PICC if she needs it. If they can't get it coordinated for both and she does need to get the PICC she will have to go under anesthesia 2 times tomorrow, which is not ideal. So cross your fingers and toes that everything lines out perfectly. A little bit of luck thrown our way would be great. 

She got to go play in the play room today, played Xbox a ton in her room, painted a little bit, and watched some shows. Tomorrow is going to be a lot of distracting her from her hunger. Could be a long day. Just keep in keeping on. Just one day closer to going home, whenever that is. 

Hospital day #1 4/15/23

Well today was a day of just hurry up and wait. We found out pretty early on that she wasn't going to be going into surgery. The infection mostly from last time has eroded away her bone on her forehead that sits in the front of the sinus cavity and also the bone that sits between the sinus cavity and her brain. It would be really risky to try and go in and clean it out now because it could push the infection into her brain. We are giving the antibiotics 48 hours to do their job then she'll get another CT and then they will reevaluate the plan. We talked about putting in a PICC so they started to put that plan in motion but infectious disease needs her blood cultures to come back clean of infection for 48 hours so we have to wait until Monday or Tuesday and hopefully nothing grows on that. Then infectious disease (ID) mentioned they might need a biopsy so they can nail down what bacteria(s) we're dealing with. The ENT and ID talked it over and decided to just try a culture from her nasal cavity. At this point it's already 1 pm and ENT finally came down to do the culture and let her know that she could finally eat and drink. She had to order food before the procedure, the poor girl was so hungry. They gave her some happy juice (versed) and went in her nose with a scope at the bedside, it was really tight because her nasal cavity is small and blocked by bone in some places. They got a swab and we are crossing our fingers that it was good enough to get good cultures off of. 

She is on 3 very big antibiotics; flagyl, ceftriaxione, and vancomycin. Vancomycin is very hard on veins and will just "eat" them away. This causes IV 's to blow and you need to start a new one. Her IV lasted a whopping 23 hours before she needed a new one. She handled it like a champ and hopefully this one will last longer. 

Her face has continued to swell a little throughout the day so we're keeping a close eye on that. Hopefully that will start to go down tomorrow. 

A funny little story after she got cultured. As she was eating her hot dog she's so super happy to be eating and add in the happy juice she was on cloud nine!  As she's eating she holds her hot dog in the air and yells "I LOVE HOT DOG". Just living her best hospital life at that moment. 🤣 we got a few chuckles out of her happy juice. 

Admitted 4/14/23

Well I kept telling people that I needed to make a post because she's been doing great... but here I am posting when she has been admitted to the hospital. 

Braylee had a cold around 2.5 weeks ago and her nose has just continued to run. She complained of a headache a couple times earlier this week but didn't want anything for the pain. She woke up this morning and was in a lot of pain, yelling at her sister to be quiet because her head hurt. And if you know Braylee you know that is completely out of character. I had already been on high alert watching her forehead so I asked her where it hurt and she pointed to the spot. Instantly triggering my PTSD from last time. I push back her bangs and see swelling and redness, I softly press on it and she gasps and jumps back. Called her pediatrician and got her in to be seen. He evaluates her and agreed with me that it was presenting just like last time with the Potts Puffy Tumor that she got her PICC for back in September. He told me just to get to SLC so we headed home to get Jeff and pack a bag. We got to the ER here at Primary Children's at about 7:30. She had labs drawn and a CT with contrast and it was officially confirmed that she has a Potts Puffy Tumor again. 😩

Her ENT isn't on call tonight so talking with the on call ENT we are going to start her on 2 of the big antibiotics she was on before. He is consulting with her ENT and the on call surgeon to see what is the best plan moving forward. We'll know more in the morning. 

I guess the universe just decided that 3 months of quiet was enough. So here we go again, we'll power through and do what we have to do. Thank you everyone for the prayers! Keep them coming!