Adoption 15. The same agency that I got Samuel from called me to tell me they had a baby of Chinese descent that may be needing a home. Her parents were from China going to school at a Texas University for their doctrine . The baby was born very hypotonic (floppy) and it was unknown what was wrong. There was a lot of possibilities , Arthrogryposis , possibly spinal muscular atrophy and depending on what type is progressive even leading to death. They wanted someone to adopt her no matter what the outcome . Well you can guess I impulsively said yes. Saying and living it I found are two different things. When we picked up our baby , we decided to name her Esther Meling Esther after my grandmother who was a strong willed feisty woman. Meiling means beautiful and delicate. She looked like a little porcelain doll but her breathing was paradoxical. ( kind of seesaw like) . I had said yes I could handle adopting a child who might die but in reality fear engulfed me at the thought we could loose her. When we brought her to Arkansas Childrens Hospital we were admitted once they looked at her breathing. The geneticist said she didnt feel she had Spinal Muscular Atrophy type 1 the most deadly form of SMA but did not rule it out. We were released with a list of specialist to start with . Estie as we called her, breathing began to improve and she became more stable but she continued to have very weak muscles and a weak cough. We had just seen our pediatrician and he remarked how well she was doing, so I decided to take her with me to our annual training at Adopt America. The first night we arrived in Toledo i was feeding Estie and she choked and aspirated. The next morning she was in respiratory distress, and was taken by ambulance to the hospital . She was put on a ventilator , the Doctor took me aside and said you know with these type of kids you need to consider taking her off life support ( the ventilator) and let her go One of my daughters was with me and we both were in shock!! At first I just glared at him then I said well even if that was necessary we would not do it here away from our family. Inside I was seething mad, what right did he have to make assumptions like that without testing? We began to make arrangements to get her back to Arkansas.the problem again who would pay the medical airfare. Arkansas Childrens agreed to come to transfer her back there since she was a patient of theirs. After one week back in Arkansas she was able to wean from the ventilator and return home. Things went fairly well until about eight weeks later when she aspirated on some baby food , She was about seven months old now, they admitted her in the hospital and within three days her lungs collapsed and she went back on a ventilator. After about three weeks and no sign of comming off of it , the PICU Doctor and I agreed she should have a tracheostomy for long term ventilation, we also decided they would do a muscle biopsy at the same time to see if we could get a diagnosis. ENT came and I signed for the trach, that was on a Friday , the procedure was scheduled for Monday. Monday morning came and no one came to take her to surgery , I started asking what was going on, I was told the procedure was canceled by the new Doctor that came on that week. Well I was livid! A meeting was planned for the next day to discuss the situation . I knew from the atmosphere and what happened in Toledo that we were in for it. So I quickly did my homework. We were placed at a oval table me and Willie surrounded by a social worker, two pulmonary Doctors two PICU Doctors a hospital representative and a Chaplin . The PICU Doctor started to explain why they canceled the tracheostomy. They said if we trach and long term ventilator her and if she has Spinal Muscular Atrophy type 1, all we would be doing is extending her life maybe until her teens and eventually all she will be able to do is move her eyes and what kind of quality of life is that. I came back , like I said I did my homework, we dont know what she has but even if she has SMA1 according to the medical journals there are three thing you can do 1( do nothing and let nature take its course and usually they will die by 2 years old ) 2( non invasive ventilation ( mask ventilation) usually extends life from 2to 4 years old or 3( tracheostomy ventilation and they could live until their teens or longer!) I went on to say , it is the familys choice because they are the ones who have to live with it. We choose tracheostomy , I told them we will give her a quality of life. A so called compromise was made. They would do the muscle biopsy, if the results were not back and she could come off the ventilator she could go home. If the results came back before she got off the vent and it was not SMA 1 they would trach her. I agreed to it to buy some time to research what to do. She had the muscle biopsy but it would take a week to two weeks to get the results back. I was praying and looking for options, I wanted my baby alive! Every person has value and deserves life! I was leaving the hospital one day and ran into the original Doctor who had scheduled her tracheostomy . He said hows it going is she trached yet? I told him the story. He looked down and gave a sigh. He said let me see what I can do, I come on tomorrow and will be covering for the Doctor there now for three days. So Monday morning came and ENT came again and I signed for the trach again. They only do their surgeries on Mondays and Wednesdays and their schedule was full on Monday so she was a work in on Wednesday .i knew the Doctor would be back on Thursday . Wednesday evening at seven p/m Estie received her tracheostomy . So began our journey of a trach and vent. We spent four months in the hospital before she was allowed home on a home ventilator. The muscle biopsy came back unknown , could be this or that. Today Esther Meiling is almost 13 she uses her ventilator only part of the day and to sleep with. She uses a wheelchair for her legs have very little muscle strength . She attends school, takes dance , plays t ball and basketball . She lives up to her name sake as being determined and feisty. We are still searching for a diagnosis on to why her muscles are so weak but Esther Meiling Johnson has a Quality of Life
Posted on: Wed, 19 Nov 2014 03:04:31 +0000
Trending Topics
Recently Viewed Topics
© 2015