What a difference a day can make. This morning Perry was moved to a different room (8) which is enclosed by actual walls rather than curtains. They did Perry's abdominal ultrasound @ 630a and found sludge (old formula) still in his stomach, his abdomen was still distended, there was no gallbladder inflammation and no gallstones, so we believe all of the writhing in pain yesterday was most likely due to him passing those stones. The second GI team came in again for another attempt to place his feeding tube during an EGD, however according to the X-ray his feeding tube again migrated upward and out of place so he is not able to resume his feedings. They are going to order another abdominal X-ray tomorrow morning to see if the tube may go back to its proper placement. If they don't see a success with that, he will have a jejunum feeding tube placed which will either require a formal surgery or a different type of procedure done by endoscopy.
Aside from not being able to place his feeding tube, huge strides of progress were made today. Before the EGD, Perry was off his vent to breathe on his own for a bit which is huge because the biggest determination to get him out of the ICU is to wean him off the vent completely. He is able to move with purpose to point, smile, wink, self comfort, move his stiff joints and to mouth words for requests and questions. It is clear to see that he is easily engaged when being spoken to, is able to ask for pain meds as needed, able to use a letter board to spell out questions he wanted answers to (albeit shakey at times as his muscles are very weak) and after a few minutes of working with his hands he was able to begin working the remote for his TV! This is a big step as well as he can now push the nurse button when he needs attention - the first time he did this he requested that his nurse Cat get "my wife"! He also requested to be able to wear his wedding ring again, which Misty had been wearing around her neck since the transplant surgery!
Great progress in terms of cognizance and motor functions, however he is acknowledging his feelings of depression. He was still having a burning sensation from the electrodes and continually asked when those could be removed. The day nurse sent a request that was then followed up by the night nurse (originally we were thinking Monday), and this finally happened today at 9:30p so we are hoping this will help him a little bit. However, just after the electrodes were removed he also pulled the vent tube from his trach before any family members were able to be back there.
While Michael and Ryan were in the room earlier, he also asked "When can I get out of here?" in regards to the ICU. They explained they were still unsure, but told him the goal is to wean off the vent, get the rest of the chest tubes removed and to get sitting up in a chair again - if things continue progressing at this rate we are hoping all, or a few, of these things can happen around Monday-Wednesday (no set timeline though). Since he is now in the new, blocked off room, he said he does feel a bit isolated now, but we also tried to reassure him that this would be a good thing so his brain can get some rest from all of the actions, bells and whistles that go off constantly on the floor.
Perry's brother Nick, Tonya and nephew Sam arrived this afternoon and much to their delight Perry was awake when they arrived and in much better shape since they had seen him last. Nick was able to put on the US Amateur golf tournament being played at Olympia Fields today on the TV, and Perry acknowledged he recognized the course and knew those are his "stomping grounds". Michael and Ryan joked that they only recognized the course when players had to hit shots from out of the woods, deep in sand traps and/or at the edge of a creek.
Pray for continued progress, more days like today and to lift Perry's spirits! Thank you.
We have established a designated fund (“Perry’s Transplant Fund”) for those of you wishing to provide financial assistance to cover Perry’s enormous and mounting medical, housing and rehabilitation expenses. We appreciate everyone’s concern and generosity in this time of great need. Any amount that you can give would be a huge support for Perry and his family. Every little bit helps!
You can make credit card donations on the "Donations" tab above. Checks can be made payable to “Perry’s Transplant Fund” and can be sent to the following address :
Perry's Transplant Fund c/o Nick J. DiGiovanni
22050 Coriander Lane
Frankfort, IL 60423
Thank you all again for your prayers and continued support to this point and all future well wishes to come. Perry and his entire family truly have a tremendous support group!