I waited and waited for someone to call me from the pathology lab yesterday. I went into work at 4 thinking no one was going to call me. Great, another 3 days of no answers. I received a call at 5:30 from the wonderful and patient lady, Peggy, that I have been in touch with for the past 120 days and she informed me that it had been signed off but could not put it in his medical records because of it being so late in the day. She said it would be the first thing she did Monday morning and she would call me as soon as she scanned it in his chart. I asked her, Can you tell me anything? Was there a cause? Did we get an answer? Cant you just fax it to my work? Your saying that I have to go another 3 days without answers when my hopes of getting them were today? She could not tell me anything because of HIPAA and privacy issues, which I totally get. I just started crying. I thanked her for calling me and told her that I will look forward to her call on Monday. My boss let me go outside for a breather so I could regain my thoughts. It was not even 5 minutes later and my phone rang and it was the pathology lab. What now? Hello? Mrs. Ellis, this is Peggy again. Dr. Quintainilla (pathologist) is here and said she can go over it with you. My stomach was in all sorts of knots. I took a deep breath and took a big swallow while I waited for her to get on the phone. And then she began to go over it with me: I will just type what my notes are. Thoracic cavity (ribcage) was very narrow for his age. (Part of his diagnosis and having an elongated body) He had less than 1/2 of his lung volume. Right upper lobe of lung was very small and never grew but there was no atelectasis (collapsing) or infection. No pneumonia. No virus or bacteria found from cultures. No signs of aspiration. Heart normal. All of this we knew. She said he had some brain atrophy, which was from being hypoxic. When his oxygen levels would decline(desat), the brain was not getting enough oxygen and therefore left some atrophy (wasting)on the white matter of the brain. Recalling back when Ayden was in NICU, he had a MRI done and it showed minute lesions on parts of the brain, which his neurologist was not concerned about at the time. He had a lot of desats when he was in NICU before we decided to put the tracheostomy in. In summary of all this, WE HAVE NO CAUSE OF DEATH! ARGH!!!! We will get the full report some time next week. It was just time for him to go be with our Heavenly Father. He wanted him more than we did. Dr. Quintainilla was so nice. She did not have to spend 30 minutes on the phone with me at 6pm on a Friday night. She told me something that they do not put in the notes and it made me smile and of course tear up. She and her resident were talking about how they could tell he was so loved and well taken care of, from his trach and G-button site, and said he had the most beautiful brown eyes. She said that Ayden would be one she would remember forever. See, I thought I could write this without crying. Pooey. He WILL always be remembered. How can you forget that smile, and his claps, and his hi-5s, and his get it, get it, gos, and his Elvis dance, and his up, down, up, downs, and...oh, I could go on forever. He was so sweet and so loved by all his medical team. To his NICU, PICU, and home health nurses that are on here: I thank you for putting up with me and Papa Bear and taking such great care of him and loving him as if he were you own! I will never forget a nurse, more than one actually, saying that he was so beautiful he could have been a girl. We had a beautiful baby, despite his diagnosis, whose life will always be cherished and remembered. I am really glad two of my best friends(Thanks Jennifer and Jessica!) from back home started this page. And to yall, my dearest Prayer Warriors, I thank each and every one of you! We could not have survived sixteen months without your prayers, kind words, and words of encouragement. I wish I could give all of you a big hug! God is our refuge and strength, a very present help in trouble. Psalm 46:1 (NKJV)
Posted on: Sat, 09 Aug 2014 18:36:10 +0000
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