Where We Go From Here

Here we are. Ainsley is resting today post-trach, after quite an ordeal. I will have to save all that for another post. Just know that right now we are trying to bring her out of sedation slowly and at the same time wean her off the ventilator, without causing additional trauma to her already traumatized upper airway. Yes it is true that we bypassed that terrible airway by surgically placing a trach, but her ENT surgeon needs her upper airway to heal before he can operate on it. 

All week he was receiving updates from the team here and requested that she remain intubated until he returned from Chile on Monday 3/25. We viewed the video of her airway scope and discussed the plan to get us out of this mess. I knew, but he confirmed, a trach would be the only option and it was planned for later in the week as long as her health allowed it. He planned to assess the current condition of her airway (intubation and crying caused further trauma) via scope in the OR when they placed the trach. We were correct that her airway was badly affected by10 days intubated plus crying. Extubation would have failed terribly and had we tried we would have be reliving the events after her birth 17 years ago.  Post intubation pictures follow below.

This video was taken on March 19th and shows the condition of her airway at that time. It is the 2nd scope and is actually worse than the one from the 17th, the day we arrived. Her "normal" airway is similar to this, but slightly less small and swollen. 

In the best of times Ainsley has narrowness through the glottic area above the true vocal cords. Any stressors can easily collapse this area which leads to more inflammation and swelling and even more difficulty breathing. This is why this time the crying in recent weeks on top of a virus landed us in the ER, after rescue meds were used to open her airway. This is a very unusual airway problem. There is not really enough space for an intubation tube. They can cause irritation to a normal sized airway.

It's important to reiterate this video is before intubation and crying, which you can see in the following pictures, where the swelling is yet worse still. This video shows her airway in action, by filming using a camera inserted through the nose. I hope it will help you* better understand what we are dealing with and what needs to be fixed. The trach temporarily bypasses this part of the airway because it sits below the larynx, in the trachea, allowing breath to pass in and out of the tracheostomy tube. (*for our non-trach familiar friends)

These images are from the scope done in the operating room after 10 days intubated and some extreme crying from pain (again, those details will have to wait for a future post).

We have been watching some interesting anatomy videos that are fantastic for better understanding how the parts of the larynx and how it works. It's fascinating and complex. Here's a link in case you want to learn more.  It's this area where Ainsley's problems are. The airway reconstruction surgery will be a Cricoid Split. Normally done to avoid a trach, in Ainsley case the trach is necessary to buy us time for the upper airway to heal. This is likely to take up to 2-4 weeks, or more. Depending on how things go it is possible we may discharged and return for the surgery later. We won't know until we see how her airway heals over the coming weeks. In her case the trach will remain until her airway is proven to be safe and we also don't know how long that will take.

If surgery isn't done as part of this hospitalization they say we need training on the care of a trach (laughable after 8 years caring for a trach) and in-home nursing before discharge. Trust me I am working to get everything in order to get out of here as soon as possible if airway reconstruction surgery is postponed. I think it is also important to say there are risks to this surgery. It could lead to her aspirating which might mean she is no longer able to eat orally which is something she loves and has done for a decade now. Aspiration can lead to lung disease which would be very undesirable. These are the reasons we haven't proceeded with this surgery in all these years. Her tissues are not normal down there and she is "not an ideal surgical candidate". We could end up opting to keep the trach but that is not an easy lifestyle and has downsides as well. We will continue to update as things develop. Hopefully very soon I will be able to share photos of a happy smiling Ainsley. 

I am dreading her waking up with a trach unexpectedly because she had no idea it was happening.  I really don't know how she's going to react but hope she takes it in stride as she so often does. Though she is now a teenager and can be unpredictable. Keep us in your thoughts and prayers as we get through the coming days, weeks and months. Thanks for the love and support!