Another day of great progress and milestones! Perry was awakened twice overnight to check ability to follow commands and he also received 2 units of blood for hemoglobin as his levels were 6.6 during the night & post transfusion increased to 8.5. His creatinine dropped to 1.98 from 2.2 last report which is another good sign that his kidneys are handling things well as this is trending downwards - 1.5 would be great!
Perry wants to know what time he will have his tracheostomy tomorrow, however there has not been a definitive answer yet as he is going to be an add-on to the previously scheduled procedures. He was also concerned that he hasn't seen Dr. Budev since surgery, but Misty explained to him she is not on hospital rotation this week and this is why Dr. Hanna has been in (yesterday and today) to say Hi. Dr Akindipe (Pulmonologist) reassured him that he is doing very well & that there is NO standard timeframe for his progression & X-ray of lungs look really good. They are just being cautious as he needed more strength & reinforced that he was very weak before the surgery & it will just take time. He was reassured that the tracheostomy will be so much better & easier to wean him off the vent. He really has been in need of reassurance that he really is doing fantastic, and after today we think he is coming around to that understanding.
At 9:40 AM his Respiratory Therapist decreased vent settings so he could take more breaths on his own for practice & continue to work his chest. The original plan was to try this for 1 hour and reassess, however he was doing so well & ended up going through 7:30 PM (~10 hours!). They also gave him the suction tool so that he now has the ability to suction his mouth when he feels necessary. In the afternoon, they also removed another large chest tube and the oral gastric tube to remove air & secretions from his stomach. He still will need formula feedings through the nasogastric tube but will be held for tomorrow's tracheostomy procedure. Once he has recovered & adjusted to the tracheostomy & has gained more strength he will have a swallow study done to determine whether or not he will be able to start taking nourishment by mouth. He has mostly been struggling with swallowing secretions & clearing his post-nasal drip with the endotracheal tube (tube in his mouth that goes into his trachea & connects him to the vent) in place & complains of back pain as he has been bedridden for ~1 week now & only able to be turned slightly to his sides with all of the drainage tubes in his chest. As he becomes weaned from the vent & sedation medications, starts to cough up secretions & take deep breaths on his own, he will begin to notice more sternal chest discomfort. He has been able to communicate by writing words on a dry-erase board which will be helpful as he will not be able to talk with the trach either, so as his dexterity improves he will be able to convey to us his needs. We have not been good at guessing letters he draws in the air or charade gestures, so all will become less frustrated & his needs will be addressed much sooner.
He started off the day in a depressed state of mind, but after a few hours of good 60's tunes, some internal mental processing, reassurance from multiple parties and Kim getting the MLB app on the iPad so he could watch the entire Cubs game, we think his mood is on an upswing.
Thank you all for your continued prayers and well wishes. Keep in remembrance Perry's organ donor & family as well. Please know that we continue to keep you all in prayer too for the strength, love, support, faith, & belief that God will see you through the many challenges this life brings to you & yours. Peace be with you!!!