Sunday, May 31, 2009

Chloe Struggles

May 31st, 2009 I don't have any particular good news to write today, other than this group continues to grow and that makes me very, very happy. Chloe has had a few rough days, since the trach trials were discontinued I guess. If you remember, when they got to 6 hours off at a time, three times a day, she just didn't do well. They had to reevaluate that process, and in the meantime, Chloe has gotten some sort of infection. Many, many different tests have been run, but it has remained inconclusive as to whether whatever she has, is viral or bacterial. She has been placed on the ventilator for the past two days, this time it is just not offering support, but is helping her to breathe. Her little heart and lungs are just working overtime and in order to get her rested she just has to have some additional help in breathing. The docs would love to see respirations in the 50's, but Chloe has consistently been taking 90 -100 breaths per minute. This number has been elevated since birth, but not quite so high or so consistently. She has been having hot sweats and it has been difficult to calm her. This is so intense for me, as it is all body language, since she cannot make a sound. I don't know if it would be worse or better to be able to hear her cry. She is so irritated, it might actually be harder. Watching the grimaces and flailing arms and hands is pretty difficult as it is. After about a day and a half of searching for clues with no apparent answers, she was put on antibiotics last evening. Better to be ahead of the eight ball and not behind it. That was about 8:30 last night, so not even having the 24 hours of antibiotic, not much has changed yet today. She was also put on Ativan, which is a mild tranquilizer that is allowing her to relax and finally sleep. It is much better to watch a sleeping baby, forced or not, believe me! We all feel that she is getting very good care. The nurses are absolutely the best, and the doctor is never far away. I watched them come and go yesterday, concerned and purposeful...looking for the answers as best they could. There just aren't any to be had quite yet. Tomorrow we have a Care Conference planned where all of Chloe's caregivers and the family will meet to discuss what has happened so far and what the future might look like. This is sort of amazing to us, as Presbyterian Saint Luke staff told us they could NEVER get everyone together at one time. Here, Jennie requested it and they asked what day would work for HER! We love it here. I wish that I had more to offer in positive news. We are thankful to God for the gift of Children's Hospital, for friends and family who call, pray, lend a hand, an ear, a heart. This is by far the hardest thing I have experienced in my life. I pray all day and dream the same thing all night, every night. God is good, all the time. We will never stop having blessings to count. I just pray that Chloe is not in a lot of pain and that God's will be done. A friend gave me the scripture to read, John 6:16-21. I encourage you to read it. It basically talks of our fears and struggles and how Jesus gives us peace and keeps us in His loving arms as we experience life's struggles. Reading it sent chills through my body and brought tears to my eyes. Thank you for sharing, Camie. So, until next time, please continue to pray and invite your friends to this group. Lovingly, Nancy

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