This is a chronicle our everyday life as we live, laugh and love raising our teenager, our toddler and our special needs baby. Normal isn't always what it seems...

Tuesday, March 6, 2012

What's going on?

Where do i begin? First, I will tell you that we are in PICU on a ventilator and have been since Saturday. Lydon is being treated right now for possible tracheitis with IV antibiotics but we hope we can get him off the vent later today. Now, for what brought us here...basically, sometime last week we started noticing that Lydon was acting like his tube was bothering him. He was a real grouch all week. Then on Thursday, he really gave the nurse a hard time about connecting the extension to give his meds. That evening after his night feeds were running, his pump kept going off. Then on Friday morning, he complained again that his tube hurt and when I checked for placement of his j tube, I got back stomach contents. So,sadly, up to the ER we went. We waited for several hours but we finally got to xray and sure enough the tube was not just sitting in his stomach but actually coiled upwards. So we got in a room and started making plans to replace it. Our big concern as always was his airway and of late our access issues or lack there of. So we went down around noon on Saturday and felt very lucky to greeted by a very wonderful and understanding surgeon and anesthesiologist. They gave us much reassurance and peace and told us they should be done in about an hour. Three hours later, our awesome surgeon come out shaking her head at us. She had to position and place his tube four times before she could get it down in position where it would stay. During the process, he required 40% more anesthesia than he had previously. Then while they were sure he was totally under anesthesia, he turned his head, coughed, and spit out the intubation tube!! Anesthesia said it was very difficult to even bag him and they were afraid he was so swollen that they may not even be able to get another tube back in. SCARE-REEEEY!! Thankfully they did and all was well back up in the PICU. Later that evening, they started trying to wean him from the vent but we just werent able to do so. Everytime we made progress, he would beome acidotic and need the extra help again. We finally decided it would be best for ENT to go back to the OR to take a look and reevaluate his airway. We did that and eveything looked pretty normal. The doctor felt that his issues were more neuromuscular and not so much structural. We will continue to follow and investigate this issue. As of this moment, Lydon is still requiring the ventilator but we are working hard to wean him off today. Furtherqmore,since they encountered so much trouble in the OR, there is talk of possibly changing out his gj tube for a straight g and straight j and placing some more permanent access in the near future. For now, we are hoping for a good day with lots of progress! :)

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