Its never easy when you hear that your child has had a setback. I shared earlier this week that Jax had been put on a home vent. He went above our expectations for him. Yesterday Jax was put back on the hospital ventilator. It does feel horrible knowing exactly how close we were...but I feel better knowing the situation could have escalated worse. The past two days he seemed to be breathing harder, and more cranky. Although, I firmly believe it had to do with a lot of changes in one week... All of which were huge changes for Jax.. vent settings, home vent placement, and shortening his trach. I also think hes getting his molars ontop of it all. Currently, hes on a pressure control setting on the hospital vent which is still the direction we want. He may not be farther in his healing Id love to report but when we prayed for full healing. I believe we are getting it. 5 months ago Jax was unstable,paralysed and had talks again over transplant options even throwing the possibility of trachea transplant(very rare) with lungs(..a year ago he started to not trigger a typical pressure setting.. making childrens use Nava which has only been out for a few years.) I have noticed a dramatic change in him. Hes taller,not as puffy, the knot on his chest is softer and going away, hes trying so hard to sit on his own, hes noticing his feet and legs more, eating well, has been reaching out to be held, and been responding to questions. He has done shaking his head, eye movements(like wheres bubba? he looks at JJ) but tonight I asked if he was thirsty and wanted a bottle and he started to smack his lips. It may not be big to you, but thats huge to us. Communication is huge! Hes not on the ventilator we had huge hopes for but hes doing amazing and really growing and developing!!
Posted on: Mon, 25 Aug 2014 04:50:53 +0000
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