DISCHARGED!! 11/19/21

 

We are out of here!!! Her  cultures grew a Coagulase-negative Staphylococci, it's a skin staph. It's sensitive to the Cipro that he put her on on last Friday and that's why it took it little bit to grow. They think there was a pocket that it couldn't penetrate and that's why it was still draining so now that he has flushed it the antibiotics should work. He's putting her on augmentin for 2 weeks because the Cipro is controversial in kids and since we have other options it's not worth it to risk. We are so happy to be getting out of here!! 

Day 4 11/18/21

Today has been a good day. She's been her normal sassy, funny, cute little self. We found out this morning that her cultures did start growing. As of right now all we know is it's a gram positive cocci, most likely a type of staph.  The lab was letting it grow more today so that they have a bigger sample to test and then they have to run a sensitivity test on it to see which antibiotic works best on it. So we are still hoping to get out of here tomorrow but depending on how long the tests and everything take it could be Saturday.  But we are so happy that we have answers and know what we are dealing with! 

She got her head wrap taken off today and that turned her attitude totally around, that thing was really making her mad. Now she gets to wear a hat to try and keep it clean, dry, and so it doesn't get irritated. Luckily I found the perfect kind at a sporting goods store here, light weight and breathable.  Her incision is still wet on that one spot and I noticed when I got to do her hair tonight that 2 more spots we're looking a little wet. So we really need those sensitivity tests to come back quick so we can get on the right antibiotics. 

We went and played more Jenga in the playroom, played with the trains and she organized the play kitchen because she just couldn't stand it anymore. 😂 And she got to video chat with one of her best friends. So it has been a really good day!! 

Hopefully tomorrow I'm updating that we're discharged! 

Day 3 11/17/21

Last night and today have been so much better!! She slept from 2pm- 8 am this morning getting 16 hours of sleep!! Just what she needed to get out of that fog. She woke up, ate some breakfast and then went and played in the play room for a couple of hours. In such a better mood and getting back to her normal self. 

As of this morning her cultures haven't grown anything. This is good and bad news. Good that she doesn't have a raging infection but we also don't know what we are dealing with that's causing her drainage and her incision not to heal. Her surgeon comes back to the hospital tomorrow so we will figure out what he's thinking then. They are still watching her cultures through tomorrow so we'll see. 

We're just so happy she has turned a corner and she's counting down the days until we get out of here. Really hope that's Friday or this girl is going to be absolutely heart broken.   

Until then we'll just keep on trying to make the best out of being here. Thanks everyone for your prayers and everything!! 

Day 2 11/16/21

Well last night was an interesting way to start the stay. Her oxygen dipped down into the 70's while she was sleeping (seems to be her thing after anesthesia now) so we hooked her CPAP up to oxygen and it went up and stayed up. Then her blood pressure dropped dramatically. We tried a couple different things but it just stayed low so the doctor order a bolus and in the meantime the Doctor was thinking hard and fast to figure out what to do to get it up, finally after about 30 minutes the bolus brought things up a little, at least into the "safer" zone. Little by little it came up and finally stayed up the rest of the night. We were finally able to get to bed at 1 a.m.

Today has been slow, which is good. She is still in an anesthesia fog. Doesn't want to eat or drink and just blankly watches her cartoons on the TV. 

She fell asleep around 2 this afternoon and has been sleeping soundly ever since. Kind of expecting her to just sleep through the rest of the night and hopefully this will get her out of her fog and she'll be happier tomorrow. 

Meanwhile Jeff and I just sit here and try not to go stir crazy. We ended up buying a Google cast to hook up to the hospital TV so that we can watch Netflix and Disney+ and everything and not have to watch the same Nickelodeon and Disney shows over and over 😂. Saving our sanity a little. 

Hopefully we'll be able to get out of here Friday. Depending on what her cultures show on Thursday we will be going home either with a PICC line to administer IV antibiotics at home or on oral antibiotics. We so hope for the oral. 

Thank you to everyone who has offered to help and/or sent her gifts or brought us food. It means a lot to us. 

Surgery Complete

Surgery is complete and everything went good. He said it didn't look bad in there and he flushed it out really well. He did wrap her up this time just because her skin is so very thin he wants to give it 48 hours to heal and not let anything irritate it. Thank you everyone for your prayers. 

Surgery #11 underway 11/15/21

She just went back. They anticipate it to take around an hour. Best case scenario we will be here  until Friday, at least......all depends on what the cultures show in 48 hours. Please pray for our girl and her doctors. 

A Curveball 11/15/21

So Braylee has been on an antibiotic for 6 days now and he even started her on another one on Friday, hoping it would help. But since she is still draining out of her incision her surgeon wants us to come down to Orem, UT to Timpanogos hospital to be directly admitted and he will take her into the OR at 5 pm to wash it out. We will be in the hospital for several days so she can get IV antibiotics. This is so not what we wanted but we're getting it taken care of before it turns into a really bad infection. Prayers for a successful wash out and that this isn't in her bone. She's pretty nervous about going into the OR again so soon but she's being so brave and strong. 

A little bump in the road 11/9/21

So we have hit a little bump in the road to recovery. We have been keeping an eye on 2 spots on her incision. One of them has been draining for a little over a week now but it hasn't ever really looked like pus and the other just didn't look like it was healing right.  We have been keeping her surgeon in the loop on everything and up until yesterday we thought everything was going ok. But yesterday part of her incision looked like it was separating. Her surgeon said to keep a close eye on it and if it got any bigger then we were to bring her in the next day. Well, yep it got bigger. So I sent more pictures to her surgeon this morning and he told us to come in. I had already packed our bags the day before just in case. We loaded up and headed to Salt Lake City. We arrived about 1:30 this afternoon and he looked it over and thought he could stitch it back together in his surgical suite there in the office. They put some topical numbing cream on her to hopefully help when they had to put the needle in for the local anesthesia. I got to go back with them to help keep her calm and still.  

She did feel the needle in some areas but she was so strong and brave about it. Now here's where things took a little more of a turn. Once he got her all cleaned up and assessed further the first side was bigger than he originally thought so he got that stitched back together with about 10 stitches. He moved to the other side, cleaned it out and immediately said "oh I don't like this at all"...."I'm not sure I will be able to get this closed, now is the time to say a few prayers".  So here I am thinking that we will be heading to Orem for her to go into surgery. He could see a little of her skull but we are very lucky that it wasn't the bone that they grafted  during surgery. If it had been the bone graft it would have been very bad since that "dead" bone wouldn't do well with being exposed and more prone for infection. Luckily after 5 stitches for this tiny maybe 1/8- 1/4 of an inch  hole he was able to get it closed. She still isn't out of the woods yet since this was all most likely caused by her skin being very thin because it got stretched from moving her forehead forward so much. We are just hoping and praying these stitches hold and there's no infection. He did start her on antibiotics just to be on the safe side. If it opens up again she will most likely be going back into surgery for a skin graft since that will be the only way to get it to close completely. Doing this would be a very long recovery. So fingers crossed we don't have to go there. 

She did so great throughout the whole procedure, I mean are we really surprised??!! The girl is a badass!! 

On a good note you wouldn't know she's going through all of this because she is just her happy, funny, normal amazing self. 

We are back home and hoping everything goes smooth the rest of the week and she can hopefully go back to school on Monday, with a lot of restrictions of course. The poor girl misses her friends so much!! 

We are just going to keep on trucking along and try to get this sweet girl 100%. Thanks for all of the prayers and happy thoughts. 

HEADS UP ....I have added the photos of her separated incision and when she was all stitched back up so if you don't like that kind stuff don't scroll past here. 😉