Reflections from the past

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March 2015 reflection 2;

Two years ago, Katie was at Denver Acute; she was eating and receptive to all their protocols. The view outside her room was the Rocky Mountains, it was beautiful. Every day she was taken outside, in a wheelchair, but they honored the importance of fresh air, sunshine. The meal planning and dietitian worked really well for Katie, she was able to focus, work with the team; the structure, routine and compassionate staff truly helped her begin to refeed and start the recovery process. Katie had arrived with a feeding tube because, appropriate protocols were not followed in Rochester and care was inconsistent and inadequate. At Denver the doctors, psychiatrist, nurses, techs, aides, schedules, systems; all worked together with a consistent and comprehensive treatment plan and program. All of these are the essentials for ED treatment. Every meal and snack was with a person who would support, reassure and coach her through so that she gained strength, courage and determination.


March 2015 Reflection 1

The Katie story continues; I received a phone call at 1:30 a.m., it was a coordinator for a medical transport who said she could transport Katie from Rochester to Denver the next day. All they needed was a $6500 deposit, right then. After a denied credit card, failure to get another card, I was able by the mercy of this person to send a check; it was a miracle but, I was able to cover the cost. We would be picked up in less than 10 hours and transported; pilot, co-pilot, EMT, nurse, Katie and I. Katie was on a feeding tube and very fragile Denver was ready and Katie was willing to go. Dr. Guadiani assured her they could help, and they did. Katie followed all the protocols, was not allowed to walk anywhere, she was transported in a wheelchair everywhere, going outside everyday was part of the daily plan. A comprehensive Acute treatment plan began; dietitian who worked with Katie, her preferences were incorporated into the plan; she could eat fresh fruit, yogurt etc, counseling, Dr., psychiatrist. Katie responded to treatment, 2 1/2 week later she was discharged with a recommendation to enter a residential treatment facility. Katie convinced the team she was ready to return home and follow a treatment plan in Chadds Ford. Katie desperately wanted to return to her apartment, her job, her life. She flew back to Buffalo and returned to Livonia for a few days before I would drive her back, she had been in a hospital for over 6 weeks. She was medically stabilized however, not in recovery. We drove back to Chadds Ford, Katie was so happy! She gave me a tour of the area, she was home. Katie went back to work, connected with her counselor but it was a fragile balance. Two and a half weeks in treatment was not enough to truly stabilize, give her brain time to heal and begin the long term process of a strong recovery. For two years ED had ravaged her life, she was still in the grips of anorexia, damage to her internal organs had occurred, the long term effects unclear.




February 2015 Reflection

Each month brings its own unique memories, two years ago this weekend Katie was admitted to Strong emergency because her vitals were dangerously low. I received a call from her Dr. in PA who was monitoring her vitals as she was continuing to work and push through the ravages of anorexia. The doctor broke protocols because she was so concerned for Katie’s health, thank God!!! I had waited months for this call, literally; I could not understand how no one, no one, said she needed medical attention!!!! My personal belief is, we cannot allow people who physically present as medically at risk should not be just allowed to “carry on”. When I say physically present, I mean anyone who knew Katie was extremely worried but felt powerless to do or say anything. When colleagues contacted Chase EAP (Employee Assistance Program) they were told there was nothing they could do. Katie’s direct supervisor was told not to get involved. She was dying in front of them, literally. In certain situations, as a country we need to reconsider. Katie was in a state where her heart was severely damaged, her life was compromised. Katie came home and was admitted to Strong, prior to this I had told Katie there would come a time when it would no longer be her choice to seek medical attention, she knew; this was going to happen. She arrived on Friday night, Saturday morning I told her she was going, the family was all home. She looked at me and said, “Mom, why do you have to be so angry, can’t we just relax and have coffee before we leave”. I was in a state of terror and feared the worst; I really thought this was going to a battle ground. I had asked the Dr. exactly what to say when we arrived at Emergency, in case they would not admit. At emergency we said she was referred by her doctor, her vitals were impacted by extreme weight loss due to anorexia. Katie remained at strong for almost 4 weeks, they were not prepared to treat an adult with extreme weight loss due to anorexia, there are very specific protocols that need to be followed by every staff member who provides care. Any inconsistent care creates an opportunity for the patient to falter. 3 weeks into her stay the Dr. said “Katie’s heart could stop at any minute”. This was the moment that I knew Katie was in grave danger, she could lose her life at any moment, her heart would just stop; it was so damaged that there was no return. The hospital was recommending “palliative care” and contacted the Nun on duty. I do not know what came over me but, through the complete and utter terror; I drew amazing strength, I was going to fight with every ounce in my being, this was NOT her time!! There was more we could do. I was not going to stand by and watch her die, palliative care = hospice; that was NOT going to happen. I had guided my dad to the other side 6 months before with palliative care. This was not an option, we need another plan. At this moment Strong could not manage her care, could not manage her case; by their own admittance. Every other treatment program on the east coast would not admit her because of her medical status. There was a 24 hour period where “NO medical faculty in the US would treat her”. Then a social worker mentioned Denver Acute, my heart lifted, a place. Then the reality hit insurance would not approve the care even though it was approved by Doctors at Strong and Denver Acute, denied!!!! Everyone involved worked for a medical review by insurance, not until her case was labeled “Catastrophic” did she get approved. Someone took notice; this was a life or death situation!!! Now we had to figure out how to get Katie from Rochester to Denver, remember her heart could stop at any moment. HOW????? A commercial flight was not a possibility; Katie’s life was in the balance.