The long road to recovery

We posted last week that Lucy would have a Contrast Study today to see if there were any leaks at her surgical site. Unfortunately, that wasn't able to happen, as she has had a rough 24 hours. Up until yesterday, she had been doing very well - she continued on low ventilator settings and had minimal output from her chest tube and suction tube. In preparation for her contrast study, she was taken off the ventilator yesterday (Monday) morning. She started on room air, so no oxygen, but gradually was struggling to keep her blood oxygen levels up, so was given more and more oxygen throughout the day and her respiratory rate was elevated, to 80 - 100 breaths per minute (BPM).

Overnight, she continued to have difficulty maintaining oxygen levels and her stridor had returned. In addition, she developed a pocket of air around her chest tube that had all of the doctors puzzled. Somewhere in her little body, everything was not sealed off as it should be, causing her air to escape to places that it shouldn't have. Therefore, she was put back on the ventilator (intubated). When there is a major change with a patient like this, the doctors typically call the parents, so Jason and I were woken up at 3 am by a call from the doctor - not the way I ever want to wake up.

When I visited her at 6 am and when Jason visited at 9 am, she was agitated, but seemed more comfortable than she had been. Unfortunately, all of the drama of the previous night meant that her Contrast Study had to be postponed until next week. When I returned later in the day, she was receiving a blood transfusion, due to decreasing hemoglobin levels. She also had a brady episode similar to what used to happen several weeks ago and her blood oxygen levels would not increase to over 50 (95 to 100 is expected). In this case she was unable to come out of it on her own and had to be "bagged," to deliver air directly into her lungs. Her ventilator was removed and re-inserted at that time, as they determined that something about her breathing tube was in the incorrect place, causing her to not be able to properly breath.

It is pretty apparent to the doctors that she has a leak at her surgical site, causing her secretions to leak into her chest and lungs and restricting her breathing to some level. In addition to the concern that they may have to re-open her up to repair the site, a lung infection is a distinct possibility. So, they started her on 3 different types of antibiotics in the hopes of combating any infections before they onset. Also, it seems apparent that something else is bothering her trachea, leading the stridor and rapid breathing that she has demonstrated over the past several weeks. This will have to be addressed after her esophagus is healed, likely by a surgical team, or ENT specialists.

As you can imagine, it has been a stressful and scary 24 hours for not only Lucy, but for Jason and I. I was very grateful for the kind-hearted nurses who provided Kleenex, a shoulder to cry on and the privacy I needed to pull myself together. We were so focused on getting her to her surgery date, that I don't think we mentally prepared for the aftermath. We were so hopeful that she would have a speedy recovery, but that will not be the case. Above all, we struggle to understand why this sweet, patient baby can't seem to catch a break and remember that doctors do not have all of the answers that we seek. It is heartbreaking to see her look up at us with those trusting eyes and know that we can't do anything to ease her pain - not even hold her. Please keep us in our prayers as we get re-filled with patience, strength and faith.

"...So that your faith might not rest on men's wisdom, but on God's power." - I Corinthians 2