Post -Op Day 12. 6/29/24

Braylee has been doing great this week back at home. Her appetite is slowly starting to return and as long as the food is soft  and we can cut it up really small then she is able to eat pretty much anything. 

She has lost so much weight so we're trying our best to put some of that weight back on her. Her sister's have learned to work the system because all they have to do is tell Braylee to ask to go for ice cream, knowing we won't say no to her getting any type of calories right now and so we all get to go for ice cream. If she wants it, she'll get it. 

She is slowly starting to be sassy and get her spunk back again and probably more than before because she knows she can get away with more right now. Even her sisters are taking her pestering them because it means we're getting closer to her being back to her normal self. 

We go see her surgeon on Tuesday the 2nd to remove her staples. Everything so far is looking good with her incision. We just hope it stays this way. 

Thanks everyone for the continued thoughts and prayers. 

DISCHARGED!!! 6/23/24

And we're out of here!! She did throw up again this morning but the doctor was in here for that one, it was mainly mucus and he said that it is all normal. Especially with pertussis. 

We're so excited to get home where the real healing happens!! 

Post-op Day #5. 6/22/24

After sleeping good all night, Braylee woke up and started throwing up and her feeding tube ended up coming with it. So, they had to pull that out and it was very unpleasant for Braylee, but she toughed it out. The doctor was actually happy that she did it, he was also starting to think it was the tube and feeds that were causing irritation. But it is hard for them to make the call on whether to take it out since they really need those nutrients. So the plan for the day was to get her to drink and try and eat. 

She did alright morning and ate a little lunch.  A couple hours after lunch they brought in a pediasure protein drink that they wanted her to drink too. She got about half of that down, reluctantly. She does not like the taste. But, then she threw up again. So my theory is she doesn't tolerate pediasure very well because that's what they were feeding in her tube as well. 

Changed the plan again and we were to focus just on water intake. Doctor told us at 7:30 that he wants her to drink 500 mL by 11:30 PM. Nurse gave us until midnight. Happy to say she got it done!  We had to start giving her the water through the syringe because she just wasn't taking very big sips and was never going to  make it to the cut off time. She complained a few times about having to take another drink but all I would have to say is to"ok well I guess we'll call them in for an IV" she would immediately be motioning for me to give her the water. Just a little push to help her get to that corner we're searching for. 

We skipped one of her Motrin times because her stomach was still upset. We figured it would also be good to know where her pain is at. A couple hours later her mouth started hurting. After some motrin, a Popsicle and  ice packs on her face, her pain was under control. So at least we know she still needs the meds and we aren't giving them for no reason. She kept pushing my hand in and out to give her the Popsicle. I asked her so you just want to hold it? She gave me that "really" look and said no. She's really taking advantage of the situation.  😂

She's looking great and her swelling has decreased so much! We're hoping she can get discharged tomorrow. The doctor was hopeful this morning that we could get out of here this weekend and with her making that water goal I think there's a pretty good chance. If she can then we can get home for her sister's birthday, her Dad got to celebrate his birthday in the hospital today. We both have now spent a birthday in the hospital. 

Post-op Day #4. 6/21/24

Braylee had a good night, only having to get up and go to the bathroom 4 times. She woke up and wanted to try some breakfast. She had a couple spoonfuls of yogurt, spoonful of pudding and tried a few other things but then said she was full. Physical therapy came by and did a little work with her and got her up and moving around.  She took a good nap after and then was pretty awake around 2 pm-ish. Since she was so awake it was time to take a shower. She felt soooo much better after that shower. She stayed awake until around 9:30 so that was the longest stretch of her being awake all week! 

She got a little nauseous this afternoon so we stopped her tube feeds and she will start those back up tonight. She tried to eat some chicken Alfredo that was really soft but it still hurts to chew, even the diced canned peaches were too much. So we ordered her some tomato soup and she was able to get about 10 spoonfuls in. It's progress and that's all we hope for each day is  a little progress. 

They'll stop her tube feeds again in the morning and hopefully she'll have a great appetite for breakfast and we can look at hopefully getting the feeding tube out sometime soon. 

Her swelling has decreased so much and she's looking great!! We saw a small glimpse of her spunky/sassy self. Which was so great to see after these long trying days, a little light was good for our hearts. 

Baby steps, but she's getting there. We're just here to follow her lead. 

Post-op Day #3. 6/20/24

Well we got thrown a little bit of a curveball last night. They ran a respiratory panel on Braylee last night and turns out she has adenovirus and pertussis (whooping cough). She's vaccinated but apparently with these new super bugs that doesn't matter anymore. They started her on a z-pack antibiotic and the whole family gets to join. So not only is she recovering from a major surgery, she has to heal from this too. It's just not fair. She's doing good, doesn't really have the "whoop cough" so hopefully the antibiotics knock it down quickly. 

Her surgeon came bright and early and said she's looking great and just focus on getting nutrients in her. Sadly, she threw up again today so we had to stop feeds again. The dietician came and formulated a plan. She is now on a formula where the protein is already partially broken down so it won't take her body as long to get the nutrients from it. So if she gets sick she should have gotten most of the nutrients. About 45 minutes into the feed her stomach started to get upset again so we slowed it down and she lasted about another hour before we had to stop and take about an hour break. They decided to start giving her zofran (anti nausea meds) so it will hopefully help her stomach settle and keep her feeds down. 

I've been kind wondering if her stomach just doesn't tolerate the formula in general since this is her first time with a feeding tube and we've never had her stomach have this many problems post-op. Could just be wishful thinking that it is that easy of a fix. 

We moved her to taking all of her medicine by pills and she's doing fantastic with that. 

Her surgeon came back this afternoon and we asked about her eating orally and he said if she is feeling up for it then do it. She was able to eat about ⅓ of a gogurt. A huge step towards getting out of here!!  We also asked if she's allowed to suck because we had for some reason thought that she wasn't supposed to. He said yeah sucking won't hurt her but I don't know if she can. Well, we have been stopping her sucking as we gave her water through her syringe. So, it's no problem for her at all! This is going to help her drinking immensely! Usually the mouth piece that they use for this surgery is so big and bulky and takes up their entire mouth, they can't suck or eat very well. This custom made mouth piece is amazing! 

She has kept everything down the rest of the day and we hope that she continues that throughout the night. She played the Nintendo switch for a couple minutes today but she got worn out very quickly, but hey it's the most normalcy we've gotten out of her in 4 days so we'll take it. 

We still aren't sure when she'll get discharged. She just needs to find that one corner to turn and she'll find it, we just have to be patient. 

Post-op Day #2. 6/19/24

All of her vitals stabilized overnight so that was reassuring that the blood transfusion worked. She was able to get her catheter and ART line out this morning. Her lungs were beginning to get a little crackly so we needed to get her up and moving so she doesn't end up with pneumonia. She cracks everyone up because when she goes for a walk around the unit it is at a speed walk. It actually becomes hard to keep up with her with her IV poles, making sure she's supported, and keeping the lines up so she doesn't trip herself. She just books it right along! If she's going to be forced to walk it's going to be the fastest walk ever so she can go lay back down. She also still has an IV in her foot, but she doesn't care about that she's focused on finishing. 

She started her tube feedings at about 9:45 this morning with some pediasure, the PICU doctor wanted to wait until her vitals stabilized before we added another thing to her plate. Well after one of her walks this afternoon she threw up twice and so we had to stop the feedings and wait 2 hours and then start back at square one with the amount and speed it was given. So far she seems to be tolerating the pediasure right now but only time will tell. It's a little setback but it wasn't surprising that it happened. The doctors had warned us it could. 

She had slept basically the whole day unless we had her up walking. She is no longer PICU status so that is a great milestone. 

We turned the halo 3 times today and she's handling that great. 

She's doing great and we hope she continues to hit milestones and get closer to discharge. 

Post-op Day #1 6/18/24

It has been a day. 

Last night after she got settled into the PICU they did an X-ray to make sure her feeding tube was still in the right place. Turns out it was coiled up and not down in her stomach, so they called her surgeon and he said to try readjusting in the morning. She slept great all night, it was probably the calmest 1st night we've ever had. 

We got woke up this morning by the doctor doing rounds and he immediately wanted to try readjusting her feeding tube. It didn't work, so he called her surgeon and he was going to try to readjust it when he came later that day. 

They took labs and her levels were quite a bit below normal, this was expected especially with the amount of blood she lost during surgery. Just something we have to keep an eye on. 

Her blood pressure was starting to get low and her MAP (which is the average arterial pressure through one blood pressure cycle) was also getting low. Braylee had been having some pain even with 2 pain meds taken everytime she could. So they decided to add precedex which is a constant drip into her IV. This seemed to get on top of her pain. 

Her blood pressure and MAP still remained low.  They ran labs again this afternoon and her levels dropped even more so, with this information and her blood pressure it was decided that she needed a blood transfusion. She is currently getting 2 units of blood, this should help her feel so much better and give her more energy. 

Her swelling isn't as much as I was expecting. Only her left eye is swollen shut mainly because she likes to sleep on her left side so, all of the blood is draining to that side. Swelling will peak tomorrow. 

Her surgeon got here around 6:45 PM. We talked everything over and I told him she had been asking for water and sprite all day. He immediately went and got a syringe to give her some water. She's swollen and just worn out it was hard for her to swallow even just a little bit. So we'll keep trying. He then moved onto replacing her feeding tube. The feeding tube was up her left nostril which is the side that is pretty much blocked by bone and hard to do anything with. He's hopeful with this surgery it will open up more and he thought it had opened a little just from surgery anyways. So he puts the new tube up her nose and takes the X-ray to check placement. We all look at the X-ray and there's no tube anywhere, so then we take one of her head, it's still not very evident where it went but I saw a part of it that looked like it was going up, I pointed it out and said that it's in her frontal sinus, he looked at it and says huh, well her frontal sinus is really big. So he pulls it and puts it back in, same thing, it goes to her frontal sinus. So this time he pulls it and pulls the nasal trumpet from her right side to put the tube in that side and it finally goes down to her stomach. Poor girl, I can't even imagine how that felt to have that up there. Just..

So... Bad! 

She will start to get a little food through her feeding tube tonight and hopefully her stomach will handle it. We need to get some nutrients in her to help promote healing. He did one turn on her distraction tonight. Each turn is .5 mm and we have to move her out around 3cm. We will get the schedule for turns tomorrow and start to dive into that. We hope that we can remove her catheter and ART lines tomorrow and take her on a wagon ride to get her up and moving a little. 

She is still in the PICU and will hopefully get out tomorrow. 

It has been a very long bumpy day but hopefully we have all the bumps worked out and it can be smooth sailing from here on out. Thank you everyone for the thoughts, prayers and gift cards for meals and coffee! Our tribe is just the best! 

                       photo from last night

Surgery Complete 6/17/24

She's done and everything went great. He closed her up with staples so we hopefully won't have to work about her opening back up again. She's heading up to the pediatric ICU. We'll get to see her soon. Thank you for all the thoughts and prayers, she still needs them but it's so wonderful to see she's loved by so many. 

In surgery 6/17/24

She just headed back. They anticipate it to take around 5 hours. She got her dental appliance put in at the orthodontist this morning and they were able to use the 3D scan we had done of her mouth to make her a customized one.  It's so small and not bulky like the appliances usually are so this will greatly improve her eating and everything post op. Her surgeon was really excited about it. Please pray, send happy thoughts, good juju whatever you have to our girl and her surgeon.