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!
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