I have about an hour. I have been wanting to get an update posted to the blog for weeks and have not taken the time. I am going to take this hour and share whatever comes at the end of it. Sometimes writing is like cold water... you just have to jump in quick.
Rich and I left Cincinnati knowing airway surgery would change Nathaniel's life. And ours. We were right. We did not know about all the different ways that would happen. In general, everything about living on the edge of life and death is gone. We no longer mentally ask ourselves the thousand safety checks we used to ask, "Are his hands too close to his trach?" or "Who has eyes on Nathaniel?" or "Did he aspirate when he vomited just now?" Life has been taken down a level in intensity. We change trach ties alone now. Nathaniel's three-year old restlessness with this process and grabby hands at his tube will no longer mean a potential oxygen deprivation accident. We drive alone with him. We leave him with his older brothers and run to the doughnut shop on Saturday mornings. He plays free with other children and away from our side on the church playground after services. On Thursday, I was in Houston at the conference; Rich was at work, and Nathaniel was home for eleven hours with a nurse who had worked only one shift prior. Quality of life. Getting on with life. Enjoying life.
Another way that life has changed is that Nathaniel has had more respiratory illnesses in the short months since surgery than he did the six months prior. We knew this would happen. The new freedoms we are experiencing means we are in contact with more people and more viruses. He has jumped from one illness to another; most have stayed very minor, however one lingered long enough that it developed into a secondary tracheitis infection. But he has not been hospitalized. Airway surgery removed aspiration. Without aspiration, no pneumonia. Even with the increased viruses, we are using fewer breathing treatments, and Nathaniel requires less suctioning than prior to airway surgery.
Because of all the positive changes in Nathaniel's heath, we have voluntarily reduced our private duty nursing hours from one hundred a week to about a hundred and fifty a month. This too relieves stress. Private duty nursing can be very helpful, but it comes with a high level of intrusiveness and managerial responsibilities for the family. We have a solid team now of three part-time nurses who each pick up a handful of shifts a month for us. It feels right and very good. Thankfully, Curious George is always willing to lend a hand when we need an extra to help give some medicine.
Life moves on in new and fun directions. Instead of fighting for airway safety, I have more time to focus on Nathaniel's therapies. I still have that promised-a-month-ago blog post on communication rolling around in my head, except now I have another month of information to add to it. Soon. Promise. Last night, Nathaniel said, "I get cookie," which is representative of growth in both language and eating. Both will likely be life-long areas of difficulty and trial for Nathaniel. We take small steps forward, sometimes big ones backward, and then forward again. One of Nathaniel's therapists summed it up well recently - we congratulate him and ourselves for how far we've come, then we move directly on to the next challenges.
Life has held some special moments in the last month. We had our first spring picnic last weekend, staying at the park until sunset when Rich had to carry a sleepy Nathaniel back to the car on his shoulders. I hosted a bridal shower for my little brother's fiancee and enjoyed attending a couple of Bailee's baby showers. I love planning and throwing parties, opening my home, and sitting long with friends over coffee or wine.
Bailee and Jeremy found out they are having a little girl at a joyous gender reveal a few weekends ago. With Bailee's seven brothers and Jeremy's two brothers, both sets of grandparents (and perhaps the expectant couple themselves) are looking forward to holding that little pink bundle of love soon. I wonder sometimes what it will be like to hear a newborn cry, a baby coo, a grandchild talk. The anticipation of those moments feels initially joyous; then suddenly, equally sad. Other infants and children crying or laughing in our home comes with such mixed emotion even when they are just visitors for an afternoon Easter egg hunt. Airway surgery has given us so much. So much wonderful living has happened already since. Yet its finality in making Nathaniel forever nonverbal still feels like a raw and open surgery wound. Through text messaging recently, Bailee and I were contemplating some of these oddities we will experience together as mother and daughter raising young children side by side. To my fretting, she replied, "Nathaniel's nieces and nephews with be his kindest and best friends, Mom." She is already motherly - expecting new life and already expecting character and compassion from that life. It is a wonderful thing to watch children become adults. No matter what the mixture of ages and stages, watching their growth is amazing. Such an amazing, wonderful thing.