Vent clinic went good just not as I had planned. We did not wean at this visit. A different doctor saw him this time which was Jaydns main doctor and is amazing! She uped his Tidal Volume and I-time on his vent. She said since he has grown so much means he needs a bigger breath. Since he isnt holding his peep we are going to be getting a new kind of vent. All of this is to hopefully help stop him from breathing so fast. He wants to breath 70 to 85 bpm. She also took his lasix from twice a day to once a day and got rid of his potassium chloride! At the next visit if doing well she is hoping to get rid of the lasix altogether and if breathing is better try weaning his oxygen not sure about weaning the vent. Also found out he has CHILD which is child hood interstitial lung disease but they dont know what caused it. It is very rare and more or less hes a mystery. The pulmonolgist we saw today is going to Florida in a few weeks to teach something and the guy that looked at his lung biopsy should be there and she is hoping to talk to him one one and find out more about Bentley. She plans to bring all his stuff with her! She also told me how great Bentley is cognitively she definitely sees him getting decanulated in the future which means not vent or trach! Not anytime soon but what a great thing to look forward too! Bentleys nurse and I went out to lunch today after his appt at Olive Garden and he loved it! First time ever sitting in a high chair and he thought he was big stuff. Then I was holding him and they handed me my food and his hand went straight in it and to his mouth. He loves alfredo sauce I found out. He kept getting mad until I gave him more. Oh I love him to pieces!
Posted on: Thu, 31 Jul 2014 20:58:26 +0000
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