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Roger's World Roger at Camp Sunshine, June 2009
Journal
Friday, March 9, 2012 12:33 PM EST In some ways it feels like just yesterday and in some ways it feels like more than a year has passed. Though tears come less frequently and happy memories more frequently, it is still a day to day process and probably always will be. We are slowly finding a new normal and find that doing things differently helps adjust to the feeling that a part is missing. Like attending Mass at different time, volunteering at the Food Pantry on a different day and changing Roger’s room into a study/office but keeping some of his “things” around in there.
One big change has been the addition of a new family member, Sully our golden retriever puppy who we got last July (see him in the photos section). He helps give us a focus for all the extra time we find ourselves with now, I did discover that your house can actually be too clean and too quiet.
In looking back at the last few posts to the website I realized that there was not a lot of info about what happened in the end, it all moved so fast. My last update told of our return trip to the ICU because of very bad lab results, suspected septic infection and possible re-transplantation. Once we got to the ICU the plan was to keep trying rounds of plasmapheresis and dialysis in an effort to get the antibody rejection under control and hope that he could get another transplant.
As the evening went on his lab values continued to get worse and the treatments really didn’t seem to be doing anything. Essentially his liver was shutting down and our only real hope was to try to coast him along with the hope that another liver would become available for him within the next few hours (a very unlikely situation). We got to the point that the ICU doctors told us we needed to decide if we were going to keep going and do whatever was necessary like intubation, CPR resuscitation etc, or make him comfortable and let things take their natural course.
Ironically just the week before we had been in the ICU and the patient next door to us had coded and the staff was doing whatever was necessary to save her and the poor parents were in the hallway distraught and hollering at the staff, it was a very difficult thing to experience and we felt so bad for the parents who were having such trouble accepting the situation.
So after much prayer to discern what to do we decided that spending our remaining time together peacefully and accepting that this was now in God’s hands was the correct course of action for us. Our catholic faith gives us guidelines as to the proper stewardship of the life that God gives us and dictates that we seek ordinary means of treatment that have the expectation of reasonable success in sustaining that life. But when those measures are not truly expected to help and may just unnecessarily prolong an inevitable death they are not necessary to pursue. Father Bob (the chaplain at Children’s) helped us to see that pushing forward toward a highly uncertain outcome with a fourth liver transplant (he likely would not survive the surgery or very long afterward) really was seeking extraordinary means and we were not morally obligated to pursue it, we could let the situation take its natural course. We would support him with IV fluids to be comfortable but felt that pain medications might just speed up the inevitable. With liver failure toxins build up quickly in the body which results in being very “out of it”, so patients are not really aware or feeling what is going on.
So we were able to spend the rest of the evening peacefully at Roger’s side, the staff was amazingly supportive, Father Bob gave him Last Rites and stayed with us till the end; we were able to pray together and share memories of our time with Roger. Even though we kind of always knew this was a very possible outcome for him and that he had battled back from many situations that should have ended his life before it was still a bit surreal that it was actually happening.
Many thanks to all of you who have prayed for and supported us though all of Roger’s medical adventures and especially the last year of adjustment without him. Needless to say we miss him very, very much but look forward to the day when we will see him again in our Father’s house in heaven.
Love, Dawn
Read Journal History
Hospital Information: God's House in Heaven
Links: http://www.campsunshine.org Where we can take a break from the real world, relax for awhile and spend some quality family time http://www.unos.org Learn about the transplant system, the waiting list and the sharing of the Gift of Life http://www.donatelife.net Become an organ donor and talk to your family about your wishes today!
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