It's time to stop delaying - I shouldn't put it off any longer. Not writing about the information isn't going to make it go away. So without further delay, here are the medical updates that have recently "rocked the boat".
Last week we took another trip out to Denver to take Eden to the Aerodigestive Clinic and we came home with both good news and bad news. The good news, we finally got some answers to many of the questions we've been asking for the last year. The bad news, the answers we got weren't what we were hoping to hear.
Unfortunately, despite our prayers for a miracle, Eden's airway problem is not something she is going to outgrow. The trach will come out, which is what we have been hoping for, but before this can happen she will have to undergo at least two major airway surgeries to rebuild a completely new airway.
Eden has been formally diagnosed with stage 3, acquired subglottic stenosis which is scar tissue and narrowing of the airway due to trama from being on the ventilator. This is an idea of what her airway looks like:
Stage 3 subglottic stenosis means her airway is greater than 90% occluded, which didn't come as a surprise to us because it has been clear to us that without her trach she cannot breath at all. This is also the reason why she has never been able to tolerate a speaker valve on her trach because the narrowing in her airway didn't allow any exhalation. Unfortunately it's not just a swelling issue caused by reflux as we had hoped.
In addition to subglottic stenosis, she also has tracheomalacia which means that her tiny airway is extremely soft and collapses on itself when she tries to inhale or exhale without the trach. This too was caused because of the ET tube in her throat when she was on the ventilator. I’m not exactly sure how yet, but the plan is to fix this problem during the second airway surgery.
As of today we are waiting to hear back from the doctors about an official plan and timeline, but after the procedure we were able to at least get a pretty good idea as to what needs to happen. The ENT said he would prefer to do the first airway surgery sooner rather than later and was hoping for sometime in January. Eden pretty quickly pushed herself up on their priority list due to the dangerous combination of her problems and the fact that she is 100% dependent on her trach. Most kids with trachs can usually breath at least a little bit around their trachs so that if there was an issue with the trach, they could at least stay breathing until a new one was put in. However, with Eden, if she were to pull out her trach, or get a mucus plug, she wouldn’t be able to breath at all until a new trach was placed. I have known this since Eden got her trach, so the news doesn’t stress me out any more, but it definitely didn’t sit well with the team of doctors and they are anxious to get the first surgery done which will open up a little bit of her airway above the trach and around the vocal cords. She will still need the trach at this point, but this will give her some ability to breath and hopefully even tolerate a speaker valve. It seems so weird (and exciting) to think that I may be able to start hearing Eden’s little voice within just a few months. It seems so unreal.
After she has healed from the first surgery, then the second surgery will be planned which will be the major reconstruction. I don’t know a lot about it yet, and haven’t had the chance to go over a lot of my questions with the doctor, but I do know that they will use her rib cartilage which acts as a stint to hold the airway open. Wow…. Seems very overwhelming. I can’t start to think too much about it all because my mind always wonders back to how heartbreaking the recovery process will be.
After she has healed from this surgery, she should be able to get the trach out. We are so excited about that, but know the road to the removal is going to be very rocky and hard. I just wish so badly that I could trade her places. The older she gets the harder this gets because she understands more and more and begins to show us that she is scared. I’m not looking forward to the process, but know that we must go through it to get her healthy and strong.
As if these two major surgeries aren’t enough to handle, I must also mention the results from the PH probe and the plans for her reflux. The probe results indicated that she does have reflux, but it is all non-acidic which means the medication is working. Her stomach and esophagus are not inflamed or distressed at all due to the reflux, but during the 24 hour probe, they were able to determine that her reflux is directly correlated with coughing. If there weren’t any airway surgeries in the future, this wouldn’t be a big deal and there probably wouldn’t be any changes made. However, the reality is that there are major airway surgeries coming up and the ENT does not want to do those surgeries and have her coughing and disrupting the healing process. So what this means is that Eden will most likely have to get a stomach surgery to stop the reflux before they do the first airway surgery.
As of right now it looks like we will be heading back to Denver sometime in December to do the stomach surgery and then back again in January for the first airway surgery.
A lot of people have asked me how I’m holding up with all this, and my answer is that I’m doing ok. It’s such a weird mix of emotions because I’m happy to finally have the information we’ve been looking for, and a plan of action, but my heart also breaks for Eden and what she will have to go through. As much as I was hoping otherwise, a big part of me was expecting the news because for quite a while now I have felt like we were going to have to go the surgery route. After one year with the trach and hardly any changes at all, I’ve felt for some time that this wasn’t going to be a problem she would just outgrow. It feels good to finally come to terms with Eden’s airway issues now that I finally know what the terms are! I was really frustrated and tired of the mystery and false hope of it all before. Now I know the route we have to take and I’m ready to move on with this part of our lives.
As with all surgeries, but especially with an airway surgery, there are some pretty big risks and chances of quite a few long term problems. We will be getting rid of a trach, but what other problems will we have to deal with going forward? Despite the risks and possible complications, there is no other alternative so at least I’m not faced with a difficult decision of whether or not we should do this. I just have to start to prepare myself now for a long road and any number of complications. I will just begin now to pray that all will go well.
It definitely puts some pretty gigantic question marks on a lot of things for our lives though, especially for next year. How many roadtrips will we have to make to and from Denver? How will we manage all those trips with Brad having to work here at home? How far back is it going to set Eden with multiple surgeries and so much recovery time? Will we be able to go visit Brad’s parents in California next spring as planned? Brad’s career makes it possible for us to take some amazing trips, will we be able to go on any of them? What does this mean for adding another baby to our family?? It’s funny, but in all honesty, none of these things seem to matter as much as just doing whatever it takes to get her healthy. Heck, almost half of 2009 was spent in a hospital, looks like we might replicate that somewhat in 2011….. we can handle that….. right?? Sigh…
I’ll be honest, I’m extremely terrified, overwhelmed, and broken hearted for Eden and what she will have to endure. I'm scared at what our future might hold. However, I’m also so grateful that we have the team of doctors who are experienced and confident in the plan for Eden. It will be a rough road to take, but when I think back on Eden’s first few months of life and the experiences that we had in almost losing her, I’m just so grateful that she is alive and developing so well and that we have the resources available to us to help get her the things she needs.
What a miracle baby she is… we wouldn’t trade her for any other baby in the world.
