Saturday, February 28, 2009

What has been going on?

Sorry that there have not been many updates this week. It really has been a pretty uneventful week all the way around. Elias continues to be suctioned quite frequently, still due to large amounts of secretions. We have a follow-up visit with his surgeon on Monday so we will see what his thoughts are on this. due to the large amount of secretions Elias is having these prolonged retching sessions. During these times he has secretions overflowing out of his trach tube and has large amounts in his mouth as well. It is as though he is so overwhelmed with secretions he is gagging on them causing him to retch and with the secretions in the trachea and trach tube it makes it difficult to breathe. It is a little like watching someone in a pool "drowning," they are panicked and gasping for air and working against their body. These episodes come on with little to no warning and have lasted anywhere from 3-5 minutes. They are a bit intense and stressful, both for us and him, but it certainly is visible how taxing it is on him when it subsides. He generally will fall asleep very quickly. Because of this and the frequent suctioning his activity level is much lower. So when we have playtime and work on things we really only get a short window in which to work before he tires out. So we take things as they come, trying to have as flexible a schedule as we can.

Next week is a very busy week with appointments just about everyday. As we mentioned before we meet with the surgeon on Monday for follow-up. We will likely be discussing when they want to do his next esophageal dilatation. When they do this they also want to do another bronchoscopy to take a look at his trachea to determine how well things look, particularly the granulation tissue. This could help determine at the very least a sketch for a timeline on the possibility of Decannulation (permanent removal of the trach tube) which will be a wonderful day when that comes. We also have Pulmonology/GI this week. I think it is safe to say we do not think Elias will be placed on oxygen like they thought they may need to.  He seems to be doing better and while his O2 saturation levels can still be lower that they would typically want, he is not having to work as hard to breathe. So we are hoping that we are predicting this correct.

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