Depression. That\u2019s what I saw in Chloe this morning, total and complete depression. It\u2019s a look that can just break your heart. She is so done with this trip! She can\u2019t see her progress for the vision she wants to be. It\u2019s really sad.<\/p>\n
Last night was a mess with lots of suctioning and little sleep. Dr. Cuyler decided today would be a good day to do a trach change to see if we had a gunked up track. I\u2019m sure a lot of what was bothering Chloe was the change. They have been very hard on her up to now. And today is a day Dana was going to go home for the night. That also very hard on her.<\/p>\n
Dana was able to go home for a time, but, with the trach being changed, she needed to be back at the hospital by 4 PM. The change was scheduled for between 4:30 and 5:30. We asked for Adivan to be on board so Chloe would be out of it by the time the change was done.<\/p>\n
Back to the morning now. Chloe went through PT\/OT with a lot of success, even though she was wiped out both physically and mentally. She had another very long walk and was able to accomplish many tasks with minimal help. She can now sit fairly straight up without a therapist holding on to her. They are just next to her now in case she completely loses her balance. Standing and walking are also with minimal therapist assistance and the walker. She is trying so hard but she still doesn\u2019t see the progress.<\/p>\n
Jenny saw quite a bit of lateral movement with her tongue during cold tests. This was very exciting and promising. We also heard earlier that Chloe is a very challenging swallow test for them. Of course, she has been a very challenging everything test for them right from the start and look what she\u2019s accomplished!<\/p>\n
During our afternoon sessions we met with her teacher and Psych. There we discussed a plan for getting her back into her school and what all that would look like. Chloe was finally out of her funk and was very involved in the conversation. She is using text to speech on her computer, but we do need to get in touch with Larry Lake as he has offered to help with a better program. If you know Larry please have him call me. I\u2019ve lost his contact information.<\/p>\n
Mama showed up just before we left the school discussion. Chloe was very happy to see her. We went to the room and had the Ativan given by 4:20. Dr. Cuyler was running late, which was a very good thing, but not late enough. The medicine didn\u2019t do what it was supposed to do, so we gave her some more. Then we gave her Oxycodone. She just wouldn\u2019t get groggy.<\/p>\n
Dr. Cuyler waited as long as he could but then it was time to get through the procedure. I\u2019ve never seen Chloe so scared in my life. Dana had promised her she would be out of it before the procedure but she wasn\u2019t going to be able to keep that promise, even though she tried with some firm delaying words. I knew it had to get done but didn\u2019t really like the fact that we were going to go back on our word. All we could do at this point was to try and calm her enough to get through it.<\/p>\n
Dr. Cuyler prepared for the change. Dana had Chloe\u2019s hand. Nurse Pat helped steady Chloe. I had the suction and lubrication ready. Then it happened. Dr. Cuyler, in one swift, smooth move removed the old trach and, even without the need for lubricant, he inserted the new slim trach in place. We were done in a matter of 5 to 6 seconds. Then I had to dive in with a lot of suctioning, as there is always a huge need for this after a change. The rest of it was easy but Chloe took some time to calm down. The suctioning took a couple hours to calm down. No matter how smooth it goes there will always be a lot of color. This is something that really worries Chloe but it\u2019s really normal\u2026 if you can think of a plastic tube being shoved through a hole in your neck and down your throat, as normal\u2026<\/p>\n
When I left tonight about 8:30 Dana and Chloe were cuddling in the bed and Chloe was pretty much asleep. We\u2019ve decided we are starting the medicine two hours before the next trach change. With all that she went through she was more focused on forgiving Mama for not being able to stop the change until the meds kicked in. She comforted her over and over again. She is such a good person.<\/p>\n
With luck there will be some sleeping going on at the hospital tonight. They both need that after what they went through this afternoon.<\/p>\n
Be well.
\nRon<\/p>\n","protected":false},"excerpt":{"rendered":"
Depression. That\u2019s what I saw in Chloe this morning, total and complete depression. It\u2019s a look that can just break your heart. She is so done with this trip! She can\u2019t see her progress for the vision she wants to be. It\u2019s really sad. Last night was a mess with lots of suctioning and little […]<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_s2mail":"","footnotes":""},"categories":[3],"tags":[],"class_list":["post-442","post","type-post","status-publish","format-standard","hentry","category-daily-news-post"],"_links":{"self":[{"href":"http:\/\/www.chloewatts.com\/wordpress\/index.php?rest_route=\/wp\/v2\/posts\/442","targetHints":{"allow":["GET"]}}],"collection":[{"href":"http:\/\/www.chloewatts.com\/wordpress\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"http:\/\/www.chloewatts.com\/wordpress\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"http:\/\/www.chloewatts.com\/wordpress\/index.php?rest_route=\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"http:\/\/www.chloewatts.com\/wordpress\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=442"}],"version-history":[{"count":1,"href":"http:\/\/www.chloewatts.com\/wordpress\/index.php?rest_route=\/wp\/v2\/posts\/442\/revisions"}],"predecessor-version":[{"id":443,"href":"http:\/\/www.chloewatts.com\/wordpress\/index.php?rest_route=\/wp\/v2\/posts\/442\/revisions\/443"}],"wp:attachment":[{"href":"http:\/\/www.chloewatts.com\/wordpress\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=442"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/www.chloewatts.com\/wordpress\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=442"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/www.chloewatts.com\/wordpress\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=442"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}