We have been in "trach jail" for exactly 671 days. Ella Grace had her tracheotomy in September of 2008 at the ripe old age of 5 months. Most of the things we have been subjected to on our journey with Ella are not common for most parents such as feeding tubes and oxygen, but the trach certainly takes the cake.
As I write this, Ella Grace is scheduled to have a sleep study on August 11th to determine whether or not she can be decannulated (i.e., trach removed). So as we hopefully near the end of life with a trach, and because it's such a rare thing, I thought I would offer a glimpse into what life with a trached child is like.
There are many specific reasons why someone may require a trach but the simple explanation is that it provides an alternative airway to the nose or mouth. In Ella's case, her airway was so tiny and fragile as an infant the doctors were unable to intubate her for surgery so it was a necessity. And because we knew she would need future surgeries, and because she was also diagnosed with sleep apnea at that time, we had to keep the trach. Nearly two years later Ella barely resembles that tiny baby in the ICU (see pictures below) but the trach unfortunately remains!
I not-so-affectionately refer to life with a trach as "trach jail" because our family is indeed imprisoned by it. No one explains to you beforehand what to expect of having a trached child (not that there is always even time to) but I think that's actually a good thing. It's probably better to let us gradually realize the enormity of the situation rather than to lay it all on us at once. I'm sure if they did 99.9% of us would go running for the hills and they probably know that.
Before you can leave the hospital with your trached baby, you must complete several hours of training including trach care and learning about all of the equipment and supplies that go along with it. When we were finally able to bring Ella home and the medical supply company began delivering it all I was in shock...how could one tiny hole require such a massive amount stuff?! Turns out that in addition to physically invading our living space, the trach also keeps us from doing a lot of normal things as a family.
For the most part, Ella Grace only leaves the house for doctor's appointments which is pretty often, but not very fun! All of her therapies are provided in the home and we have home nurses who help us care for her during the day. Besides the fact that I look like a pack mule with all of the stuff Ella requires to have with her when we go out, the risk of infection is greater with a trach so less exposure to public places and people is best and Ella spends most of her time at home which means family outings are very rare occasions but we attempt it every now and then.
As most parents do, John and I also find that we would like to leave the house as a couple from time to time, but when you have a child with a trach a willing friend or even a highly-recommended babysitter just won't do. Only someone who has the proper training can watch Ella and in our world that includes only my husband, myself or one of our home nurses. Unless we have a nurse to watch her, we can't leave the house at the same time. (Thank God for our home nurses!)
The general care that comes along with a trach can also be overwhelming. Trach care must occur twice a day including cleaning the areas and changing the ties (that hold the tracheotomy tube in place) around her neck once a day. Close monitoring of the neck and stoma are also required and there are creams, powders and gauze pads to help us maintain it. The trach itself must be changed out once a week, or sooner if she gets sick. Trach precautions must be used while bathing - no water can go down that hole! Suctioning is one of the least fun activities associated with a trach and I'm sure it sounds disgusting to an outsider so I won't go into detail. At night Ella is placed on a ventilator for pressure support/C-PAP and provides warm, humidified air to the trach. We also have oxygen on hand in case she ever needs a little help. And because risk of infection is higher with a trach, and she does get sick more often, hospitalizations are very frequent.
So please, say a little prayer that we'll be paroled in a few weeks for good behavior (we have been good, right?) and I will look forward to writing a future blog about life AFTER trach when we are free at last!