Update Wednesday July 20

Well, the day started off well, Ajay looked "Not so puffy" and his fever was gone! He had been struggling with a fever for 3 days above 102 range with meds. So it was to celebrate THIS morning without fever!

 

As the doctors started to make their rounds, they said that there was no change in Ajay's right lung and that they would be doing another bronchoscope today. I of course signed all the release forms to do the test, in hopes of finding out why his lung isnt responding to treatment.

 

The test was performed, and with amazement, he failed. The results were no different than last week when they did the same test. I believe they are puzzled by the fact that his lung isn't responding...and they are not sure how to pump it up. They increased the ventillator, are using RT meds, chest PT, and suctioning fluids every hour if not more, to increase the lung or "inflate it" so that we can start to ween off the vent. As doctors furthered their study, they found that he still had the bronchial malasia deep into his lungs, which again, is a spongey like airway capsules that expand and contract with normal breathing. Ajay has compromised airsacs making it difficult for him to breathe. But, they say that that is also congenital, so he had it before the surgery....that doesn't tell us why the lung won't inflate other than the bruising it took during surgery. They now say that since the chest xray is still cloudy, they feel that there may be a large clot encapsulated between the lung and chest wall/ rib cage making it difficult for the lung to inflate. This type of clot isn't like the typical clots...it is not the kind that travels and with risks of potential harm...this is the kind that holds itself together, like a bruised filled sac, which happens to be on top of Ajay's lung. This is all speculation of course, but the fact that we were not able to start weening from the ventillator all week because of the bacterial infection, and bruising, collasped lung, makes me angry. I feel like we are waiting for nothing! If this is indeed a clot, then the course of treatment would have been so different. So all in all, we are still not sure why this lung is not responding. The cardiologist, was trying to call Dr. Bove for consultation since he was the surgeon who performed the surgery. I should here today what the next step would be...possibly wait again for the clot to dissapate, run more tests, rest, wait, and wait some more...very frustrating...

 

In the mean time, settings on the vent were increased due to the increased sedation to perform the bronchoscope. That being said, we didn't make any progress. Back to square one. All the progress we had gained in the last day was erased. Again, very frustrating...and no infection was hanging out in the lung. The doctors said that it was a good sign that the infection is more then likely either deeper than they can reach from the scope, or its in between the bruising and swelling of the lung.

 

Ajay has been so sedated that he is not aware too much of what is going on. He has only opened his eyes for a second, then off to sleep again. I talk to him and let him know how much everyone is praying for him, and how many people love him. He looks peacefully sleeping as I left tonight. He is beginning to itch a lot from the morphine and other sedation meds. His tolerance has been building to these drugs, making me a little nervous, but I do understand the need for his safety. He has to be able to leave all the tubes and lines coming in and out of his body ALONE :) I don't think any 2 yr old could just lie there without a little help. We put mittens on his hands and his restraints are still in place so he doesn't itch or pull out any tubes or lines. They are giving him Benedryl for the itching and it seems to work some. I

 

As I left late last night, his fever spiked to 102 again. Cultures were taken from every line, drain and opening to see what is causing his fevers. Again, doctors say its normal to have some fever after a large surgery like this and not be to alarmed. Culture results have not been released.

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