Ambrose is having a BAD morning!

When I came in this morning Ambrose was on pressure control with a rate of 24 on the ventilator. (Meaning he is no longer breathing on his own with just the extra pressure of CPAP and Pressure support.) Apparently he started having some severe desturation episodes where his sats were as low as 20 and not going much over 60 with bagging. He has had several doses of xopenex (avariation of albuterol with a different propellent) and duo nebs. He had 2 less severe episodes yesterday that responded to the bagging and xopenex.

His blood gas showed high potassium and CO2 but when they rechecked them from a venus sample they were OK.

He had another fever. (Day 8)

PICU attending Dr. Braga's careful observation led him to notice that there was a problem with his trach. (Ambrose has very unusual anatomy and currently uses a custom trach that is longer than usual with an increased angle because the standard sizes tip back and occlude against the back wall of his trachea and also to try to bypass areas of tracheomalacia. When they put him on the vent originally for just the CPAP and pressure support it would not work due to the significant air leak around his usual (uncuffed) trach. They needed to put in a cuffed trach which is a standard pediatric size. The larger diameter of the cuffed trach made it difficult to put in and resulted in blood tinged secretions for the first 2 days.) He noticed that Ambrose was breathing through his mouth. When he moved the trach around a bit he seemed to do better. So they over inflated the cuff , which may be holding it in a better position for him and he seemed to be breathing much better. They subsequently were able to decrease some of his vent settings, but he is still on a rate and higher pressure support than yesterday. So we are hoping this is more of a mechanical issue than a worsening of his lung disease. We are waiting for his ENT Dr Smith to come scope him and give his guidance about what trach may be best. (They ordered a custom cuffed trach for him but it will take a few weeks.)

Please send strength our way.