Tuesday, May 5, 2009

Tough road to rehab ahead

Ava’s body continues to heal, thanks to your prayers and support for her. She was taken off of the oxygen entirely today and was breathing only room air with a little “blow-by” oxygen (This is just where they let oxygen blow into the air near her face). She tolerated this very well. Her white blood cell count has continued to come down. It isn’t quite normal yet, but has improved a lot and should continue to do so. Her biggest problem over the past day or two was her intestines not working too well. Today she continued to poop, which is good. She was also taken back up to full tube feeds. If she does well tonight, then she should be ready for transfer from the Pediatric Intensive Care unit tomorrow to an inpatient rehabilitation program at Christa Santa Rosa Hospital. AMAZING!!!! Thank you for your prayers.

Now… we have briefly discussed this before… 1. “72 hour window”. Check. 2. Extubation/Off the ventilator. Check. 3. Discharge from the PICU. Check. Ava will have met all discharge criterion to get out of the PICU. It is possible for her to breathe, be nourished (through a feeding tube through her nose), and get rid of waste products (pee and poop). Check… However, the road to recovery will be long and rehabilitation will not be easy. Today she should be transferred to an in-patient program focusing on her rehabilitation. She will likely be there for a few weeks, maybe longer, before being able to come home.

It remains unclear what Ava is registering from her environment. While the broken parts of her body have continued to heal, Ava’s personality is yet to be revealed to us. It is very important that we remember to keep the Lopez family in our prayers and continue to offer aid where we can. When she finally does come home, caring for Ava in the hospital will be different than caring for Ava out of the hospital. The hospital environment, especially the PICU, is geared for support. No one knows what the pace of her recovery will be, and it may be slower than her meteoric physical recovery from 23Apr09. If this happens to be the case, then things have the possibility of becoming emotionally difficult for the Lopez’s. Without our continued support it would be even more difficult. Care for Ava could potentially be like caring for a 25 pound newborn. What were once “simple” tasks with an 18 month-old (e.g. bathing, feeding, changing clothes, etc) will become much more challenging. This may be compounded by the fact that there are still two other young children at home.

I suspect that one of the reasons that so many are following Ava’s progress is because they have an “Ava” in their life, somewhere. They know that if the Lopez family was disrupted while picking up grass clippings in their side yard (about the safest place that they could be), then we are all at risk of having our own lives “disrupted.” The news reports could have just as easily been about any child you know, and it would have been equally tragic.

Please know that I am not trying to be a pessimist, but I am very concerned that many of the people who are following this journal will see “Ava was discharged from the PICU!!” and think, “all is well, time to return to our normal lives.” While a degree of normalcy must return for everyone, including the Lopez family, we must remember that “normal” for them will not be “normal,” at least not for a while. These people are our friends, and they will need us. The process of grieving and adjusting to this horrifying incident has not yet run its course. I suspect that while the Lopez’s are elated that they have come so far, there will be times that they reflect on what has been taken from them. Those days will not be so joyous, and someone needs to be there to walk with them.

It reminds me of a religious story… A man dies. He has the opportunity to look at his course in life as footprints on the beach. One set were his, another set belonged to Jesus. The man noticed that during the most difficult times in his life there was only one set of footprints on the beach. He inquired… “why would you leave me during such difficult times?” The reply, “I would never leave you. It was during those times that I carried you.” I do not want to come across as being overly mellow-dramatic, but I think of the Lopez’s and can’t help but to interject my own life into their circumstances and think of the loneliness and sorrow that I would feel from time to time… will feel… from time to time.

I have seen the most amazing good spring up from you. People from far and wide have identified with the Lopez family tragedy and have offered the most incredible love and support. I have been inspired and my life enriched because of your generosity and goodness. Let us remember that their need for support does not end tomorrow.
We must not forget. We cannot forget.


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