This trip this year was a long one! Eden and I were in Cincinnati from the 9th-19th because of the way her appointments and post surgery follow up went. Because the trip was longer, we decided to try out a new hotel with a small kitchen so we could settle in and make more meals in, rather than going out a lot. This also allowed us to stay put for the first few days after surgery so she could rest and not move around too much. We really liked the new place, and it was in a quieter location which was nice. Having the kitchen and not eating out every meal for ten days was a must, so I'm glad we found it.
Before all the medical stuff began though, we had time Monday morning to do a few things before our appointments began that afternoon. We hit up some of our traditional favorites - First Watch for breakfast and then a little shopping at the outlets!
This "Bucky Knows Lucky" weird sign is still hanging! I think this is going on year 3 now. It's such a weird picture, and we laugh about it every year.
Eden got some cute new Converse at the outlet store. She looks great!
That afternoon the medical journey began back at Cincinnati Children's Hospital. She had appointments with the pulmonologist to do all the lung tests - she hates these. Fortunately though, everything from the pulmonologist side looks good with her lungs and breathing there. Then we did clinic visits with ENT and the plastic surgery department to go over the procedures to be done the following day.
ENT: her sleep study done before coming out to Cincinnati shows increased work of breathing and more obstruction during sleep than last year. The change isn't major, but the fact that it's gotten worse since last year is obviously not good news. So they will be checking her airway when she's under anesthesia and see what they can and if there's anything they can laser out or remove.
Plastics: This year we are also starting our journey with plastic surgery. When Eden was 18 months old and had her first airway reconstruction surgery, they had to take a rib graft for the cartilage for her airway. As she has grown and hit puberty, the scar from that rib graft is causing some growth problems for her breast on that side. So the plan during anesthesia this trip is to go in and release the tension of that scar, and then take some fat cells from her legs and possibly her abdomen and put them into her left breast to try to help with symmetry.
One thing we have learned through her journey, in so many examples, is that you do something to fix one area that seems to have a chain reaction to something else, which gives us more to work on. It's sad and discouraging, and frustrating and angering all at once. I hate that she has to experience all these things, and the impact they have on her ability to live life like she wants to. For example, she was really enjoying her ballet class, but she has to quit because her recovery from this surgery requires very little moving and twisting, or lifting for six weeks. Sucks. I'm sorry Eden. I wish I could take all of this from you!
That night we got back to the hotel and had a surprise delivery from the Petersons in Tennessee! Thank you Julie for your thoughtfulness and love. Being in Cincinnati and removed from life while dealing with these medical things can feel really sad and lonely, so thank you for showing us that we are not forgotten!
She was so excited to get a cute new koala to be her surgery buddy with Doug the sloth that they sent us on a previous trip. Doug has traveled with us ever since! We also got some fun little activities and things to do while we are at the hotel during recovery time. Thank you Julie!
The next morning we checked in early and she was taken off to surgery! She now has to get her IVs before going in to the OR and this continues to be the worst part. Even with ultrasound machine, they always have to try a few times. Her poor veins are shot.
After I hugged her and kissed her goodbye on that operating table and walked out, I took up my usual spot in the corner of the waiting room, a spot I can hopefully hide from eye contact from any other worried parents in that room. I'm always in a very weak mental space here, so I'm glad I'm alone, but the thought of that also makes me so sad. Why does being alone in my fear and worry feel like it's the way it should be? I guess it feels like that's the only way to feel safe to deal with it however I need to. I hate this place, and I hate it more for her than I do for me, and that's a lot of emotion to hold. It's so much pain over the years, and it just seems to build into deeper layers every time I walk away from her on that operating room table.
Surgery lasted a little over an hour, and everything went smoothly. I was able to come reconnect with her, even before she had woken up from anesthesia. She looked so beautiful and peaceful. After waiting anxiously in the waiting room, and then meeting with both teams of doctors while she was in post op, I was chaos of emotions on the inside, but I just wanted to hold her and comfort her and deal with reality later. I guess one thing all this experience has taught me is that I have figured out a way of separating my emotions, and putting a pause on those so I can put my energy into the action of comforting her, and being solid for her. The processing would have to wait.
So here's the reality of what we are looking at now after visiting with the teams of doctors post surgery:
Plastics: the surgery went well, though they weren't able to harvest as many fat cells as they had hoped. If you know Eden, you know this girl doesn't have a lot of fat on her body to take. They were able to release the scar, and transfer about 30ccs of fat cells from her thighs though, so we should be able to see some results from that. It's always unsure how many of the cells transferred will die and how many will live and grow in the new space. This is just the beginning of this road though, and may need to be done a few more times before she will have symmetry and a more natural look. Obviously this is sad news knowing the pain and recovery, and forced "down time" that comes every time she has to do this surgery.
ENT: based on looking at her airway under anesthesia, there really wasn't any more tissue he can take at this point. The obstruction to her airway is coming from a spot near her vocal cords that he said is like a broken curtain rod so her cartilage is all loose and hanging down into her airway. This is a problem he has been watching, but has been trying to maximize the space in every other way first in previous visits. It seems inevitable at this point though that in order to get better, this has to be dealt with. The surgery to fix this would be complicated, but he was hesitant to say yet what that might look like until he got more information. So he added some additional imaging and testing for us to do before we go home to get some good CT images of her airway so he can figure out exactly what kind of surgery will need to be done to fix this. This was a huge blow and brings a lot of fear for me, and a deep pain for her and this reality of her life. I had so many questions, but until we get more information, there's not a lot we can talk about yet.
So back to post op: She woke up enough to get her off CPAP, but she was still so sleepy and couldn't quite shake the anesthesia. She would wake up enough to say she was freezing, and then doze back off, and this happened for about an hour, coming in and out of consciousness. She was SO sleepy this time.
Finally she was able to stay awake, but she just couldn't get warm! We had to keep wrapping her in warm blankets to keep her comfortable. At this point she was starting to feel the pain from surgery. It was all starting to settle in.
After a few hours, we were able to get discharged. We were both looking forward to getting back to the hotel and resting. Poor baby, she was sore all over. FOrtunatley, they didn't end up having
After that good cry though, it was good to get back to recovery and being present with Eden. She is blessed with a body that heals, and a spirit that never stops fighting. This girl has grit, and is not afraid of discomfort, and I admire her so much for that.
Over the next few days we really didn't leave the hotel. She slept, did crafts, and watched "Anne with an E" her new favorite show. I made meals, and read, and worked on the blog. It was slow and quiet healing time for us both.
By about day 4 we were both ready to get out and move a bit. She had a big research paper due at school when we got back, so we decided a good low key activity would be to visit the library to find some sources for her paper.
This first library branch we went to was an old historic home built in 1895 that had been turned into a library branch. It still had so much of the historic structures inside, with beautiful carved wood and stained glass windows. It was absolutely gorgeous! They didn't have any of the books we needed there, but it was beautiful to walk through.
Then we went on to the bigger public library downtown and found plenty of sources to work with. The library had these "quiet pods" where she could work on her paper. It was a great way to get out and feel accomplished!
She was still really sore on her legs, so we didn't get out or move around much, but we were at the point of needing to do a little something every day. We made another stop for brunch at our favorite place, First Watch.
I accidentally dropped the iPad directly onto my second toe. It definitely broke my toe. It turned completely purple, and wouldn't fit well into my shoe. It looks just a little swollen, but it felt huge and painful inside my shoe. Crazy!
We had dinner out at a crazy loud Mexican restaurant by our hotel. The food was delicious, but that place was just a huge loud party. We would watch them deliver these huge, frosty drinks with sparklers burning from them. That was like dinner and a show, though we couldn't really even talk to each other it was so loud.
We found a ceramics painting shop and painted some ceramics to bring home. At this point we were running out of ideas of things to do that didn't require us to move around too much! Fortunately, we only had one day left.
Final full day in Cincinnati was another day of appointments at the hospital. But first, our third breakfast at First Watch. :)
Then we went back to ENT clinic for an airway scope. She is such a champ getting that camera put through her nose and down into her airway. During this scope he was able to show me more of the problem area of her airway and what it was doing when she was awake and talking and breathing. At this time he shared some potential ideas for surgery which would include having to open back up her airway from her neck, and try to tether back the "broken curtain" area. Then he would need to place a stint during healing which could possibly mean she would have to get a trach again. The idea is that it would be temporary, but we know the complications that arise and that things don't end up being temporary sometimes. I think he could see the panic in my eyes and said he wants to try to come up with a plan that wouldn't include that option, but he needed more information first, and more time to work on it. Of course I had a million questions and thoughts running through my mind about how we would manage all of this. I hate it all so much, but I'm grateful for my ability to be level headed and "action oriented" in the moments in front of the doctors when it matters to be her advocate.
In order to make a better plan, he wanted to get more in depth imaging of her airway so our next appointment was a CT scan of her head and neck. They did several different images as she spoke, swallowed, and moved, etc.
Our ENT doc said he would study all the images and videos, meet with a team of ENTs to get opinions, and we would set up a zoom call in one month to discuss options and what he recommended. I felt like my time earlier in the week in the laundry room gave me the space to feel and process all the emotions and fears, and the "worst case scenario" ideas. I need that in order to feel like I can handle what will come. I hate that we are going home with so many big unanswered questions, and that we have to wait a month to get any information, but there's nothing else we can do right now. It's been a long ten days, and we are so ready to go home. She has done well with all of this, and is so good about trying to stay positive. I love you deeply Eden, and I'm here for you 100%.
Update: we had our zoom meeting with the doctor in early May. From the CT images he can see the placement of a bone in her neck is lower than normal and putting a lot of pressure on the airway from the outside. This could be contributing to that "broken curtain" area that looks like it is sagging into her airway. It's hard to say how much is the tissue and damaged cartilage, and how much is from the pressure pushing in from this bone. He said a potential surgery idea is to go in and move that bone and see if/how that relieves any pressure in the airway. He was very frank and honest to say that he has never done a surgery like this, and isn't 100% convinced it would give us the results we would need. At this point the question became her quality of life right now and how important it was to act immediately, versus the ability to wait. We all decided that for now, nothing needs to be done and she is still in a safe spot where her airway isn't impeding her life so much that it's worth the risk of doing this surgery. We know from last year to this year that things are slowly getting worse, but she is comfortable, she is content using the CPAP to sleep, and she is able to do her music and so many things that she enjoys. Her quality of life right now isn't suffering, and her airway isn't in a dangerous or risky spot, so it's just not worth experimenting with this surgery right now. We will table all of this, continue to monitor her, and follow up again next spring at our next visit to Cincinnati. I feel content knowing this is the best plan for now, but also hate knowing that something big is coming. We will deal with that when it comes though. We are grateful for our girl, her grit and willingness to fight, and for all of her amazing healing! Love you Eden.
This first picture is a 3D image looking down into her airway. You can see how it is a long thin oval, instead of a more round tubelike shape. The second image is a shot from outside her head. The white rectangle shape near the mouse arrow is the bone that they think may be pushing in the area of the airway to the right of it that is a very small passage. It's hard to know at this point how much that bone really is affecting it.
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