Surgery details
Faith was in good spirits going into surgery on Tuesday - she got some Versed right before they took her back, which helped her relax quite a bit and she recorded a cute video of her talking and telling everyone how much she loves you all and appreciates the support. She wanted to do that because she won't be able to speak for the next 6 weeks or so.
Outside of the Ronald McDonald House
the morning of surgery
After taking some Versed
She came out of surgery around 6pm - and looked really good (swelling typically kicks in around 24-48 hours later, so we can actually see some of the results right away before she swells up). Dr. Gordon decided to do the LeFort 1 - he cut her upper mandible between the nose and teeth and shortened it a bit and then plated it in place. He also did a little bit of rhinoplasty turning her nose up a tiny bit which apparently is the ideal nose! He said she may need some further work on her nose in a future surgery, but it should look better just from what he did this time.
He also did the lower jaw distraction, cutting her jaw in the two places I showed on the drawing in yesterday's post. And he attached the RED (Rigid Extraction Device) to her head and it is attached to her lower jaw for us to turn the pins 2X a day for next 4 weeks - that will grow her lower jaw 2mm a day X 28 days is almost 6cm - it's an awful lot and it will look really overboard until he removes the hardware and then the bone retracts back a bit (he describes it as imagine stretching a piece of gum and then letting go). By over-distracting, it gives him some extra bone to help add when it retracts.
Faith had a pretty uneventful first night, she woke up in pain of course, but once they got her pain meds adjusted she was able to sleep. I'll never understand how she sleeps on her side with the RED device on her head - it looks incredibly uncomfortable. The halo is held in place with 5 bolts on each side - they have flat ends and basically are pressing against her scalp, they don't go into the skin.
I did get up and suction her trach out about every hour throughout the night, she has a lot of bloody drainage and is coughing a lot of it up. It's always an interesting balance with the nurses about whether they want me helping or not, but most of them welcome mom or dad doing what they are comfortable doing to keep their kiddos happy.
Post Op - Day 1
Faith had a very good day. Her day nurse, Chelsea, was great, although Faith got pretty upset with her at one point because she took out Faith's foley catheter and one of her 3 IVs - Faith's most hated event of every surgery. Faith even has a tape "allergy" in her charts because she gets so upset about having tape removed. Chelsea told her she would be quick, but I think that upset Faith more, so she said she would go slow, but then she didn't. Later in the day Faith wrote a sentence on her notepad to Chelsea saying "it hurt because you didn't use any wipes first and just ripped the tape off!" It was kind of funny that Faith didn't hold back any punches, just told her what she thought. Faith was pretty annoyed with both Chelsea and me by the time we were done cleaning her up and doing all that - she just wanted us both to stop and leave her alone!
She managed to get out of bed many times to go to the bathroom and to go into the hallway to play fetch with Millie, one of two therapy dogs that are "employees" of the hospital and come to work everyday to help motivate and sooth kids as they are recovering. After their playtime, Millie got to jump on Faith's bed and just lay with her for a little bit - Faith was very happy about her time with Millie.
Dr. Gordon came to visit Faith late in the afternoon on Day 1 and had me do her first pin turning. Faith said no at first, but then she let me do it - he told her she probably wouldn't feel it and it seemed like she didn't. We will be turning her pins 1mm 2X a day - which isn't too bad and it is pulling the cut bones apart so new bone can grow in the gap, so it really shouldn't be too bad. We will be distracting for about 4 weeks. To start with, we will be distracting both sides the same amount, but at some point Dr. Gordon indicated we might start trying to drive her shorter side further to the other side by distracting it more - I'm just guessing that means we might continue to turn that pin 2X a day and only turn the other one 1X a day.
Faith spent a little time on her phone yesterday and got some fun things from the child life team (fidget spinners and pop-it's), spent the afternoon with Fred (while I went back to the Ronald McDonald house to shower, nap and just have some downtime) and she especially enjoyed having Anthony hanging out with her and being able to sign with him to communicate. The three of us hung out watching the Colorado Avalanche play game 4 of the Stanley cup finals. Faith fell asleep before the game ended, but Anthony and I were excited to see them win game 3 out of 4 against Tampa Bay Lightning - tomorrow night is game 5 and we are excited to watch it! Fred is bumming a little bit, because he could actually be working the game tomorrow night and be able to watch it in person, but he's here (which is where he wants to be).
Post Op Day 2
Faith had another good night last night - slept much more with less interruptions than the first night. Her trach secretions have mostly cleared up and are not too bloody now. She also let the nurses do a little mouth cleaning yesterday and wanted to suction her mouth out herself late last night.
The plan for today is to get her transitioned from all her IV meds to everything going through her G-tube, get her up and walking around some more and get all the medical supplies we need to care for her at home. She got her first g-tube feeding this morning and it went well. They will be increasing the quantity with each feeding and if she tolerates those well we should be on track for discharge tomorrow.
Our hope is to drive to my parent's house in Virginia tomorrow, about an 8 hour drive not including stops - but I'm concerned we won't be able to get started till late in the day and so trying to see if it would make more sense to stay one more night at the Ronald McDonald house or to plan to drive about half of it tomorrow night, stay at a hotel and then drive the rest of it Saturday. It's a lot of driving and I'm not sure how Faith will be feeling with it all.
This is the first surgery we've travelled for since Fred and I split up in 2018. We are very fortunate to have figured out how to co-parent together and continue spending time together as a family. This trip has gone very smoothly so far. We are sharing a room at the Ronald McDonald House - luckily with 2 Queen beds and a separate living room space. I've been staying at the hospital over night and he comes to relieve me in the mornings - this is really the same routine we've always done, but I see him being so much more comfortable with it now than in years past. I'm so happy to be able to work together so well to give Faith the support she needs!! 😊💜
Well that's about it for now - I'll aim to provide another update in the next day or two! Thank you so much for all the wonderful support, we are truly grateful.
