Happy 30th birthday to our oldest son, Michael. One year ago today, Perry was listed for a heart/double lung transplant by UNOS. Forty seven years ago today, in 1968, Perry underwent his second heart surgery.[...]
🙏Novena to O Immaculate Virgin Mary
Sunday, December 13, 2015 - Monday, December 21, 2015[...]
Brief update... Since last weekend, Perry has been experiencing R sided flank pain & an increase in oral & trach secretions which is how he typically presents with the start of a developing pneumonia. He has regressed at times to using hand signals instead of mouthing words & was not able to do trach collar trials on Tuesday, Wednesday & completed one 40 minute trial on Thursday & a 33 minute trial today. Trach secretion cultures were taken on Tuesday & Wednesday both of which were rejected & another specimen sent to lab again on Thursday early AM which the preliminary results back today indicated gram positive organisms which are frequently the sources of pneumonia & septicemia. He of course has been sleeping quite a bit for the last several days & very restless & not able to get comfortable on several nights. A bronchoscopy was done at 1230p today with thick & thin cloudy & opaque white mucous returns with a sample sent for cultures as well. IV "heavy gun"antibiotics, Vancomycin & Zosyn were started today. He is to have a repeat bronchoscopy on Monday & insertion of a different trach tube that has a sub-epiglottic suction port to allow for suctioning of his secretions that sit above his trach cuff. I have repeatedly stated over & over & over again to nurses, RTs & physicians how much mucous he collects at the back of his throat (pre-transplant) & as a result a huge abundance sits on top of his trach cuff so with his trach continuing to leak air & gurgles there has been mucous seepage into his lungs increasing his risk for infection. Pre-transplant it would literally take hours for him to just break up the mucous collection in the morning & then all day long as well. FINALLY.... the trach tube was specially ordered & arrived yesterday & I was informed that the trach would be changed yesterday. Today, I was informed that the physician who needs to place it, is out of town until Monday. According to their policy, the physician who places the original trach has to be the one who changes out the trach. Although a different physician, Dr. Dale Marsh, did his first trach change on 10/07 & another physician changed out his trach on 11/13 during a bronchoscopy. [...]
Perry slept fairly well during the night for Josh RN with need for intermittent oral suctioning.
Perry & I were awakened shortly before 7a to bright lights being turned on by 2 female physicians who came to look at Perry’s trach without introduction as to who they were, what service they were from & why they were doing what they were doing. Similar incidences happen all too frequent. One of them stated he would need to have a bronchoscopy to look at his trachea. I informed them that he had undergone several recent bronchoscopies on 11/13, then the following Tuesday, Wednesday & Thursday, (a video bronchoscopy on that Thursday) as well as repeat bronchoscopies on following Tuesday & Friday, & last Thursday. I also informed them that he is to undergo several procedures today. I encouraged Perry to return to sleep & turned off the lights left on by the physicians after Josh RN & I discussed that he had not been informed by the physicians either. Robin RN was his assigned day shift RN from 7a-11a. Dr. Hanine Inaty representing Cardiothoracic team today rounded this AM & was informed that Perry has been having increased cloudy white oral & trach secretions Saturday & Sunday & was experiencing higher carbon dioxide levels while sleeping intermittently yesterday. I also informed her that he had awakened last evening complaining of lower R flank area pain as well as side discomfort with breathing trials & had complained of frontal headache yesterday after trach collar breathing. She was also informed that pre-transplant, his pneumonias would many times present with flank pain & that 99 degrees F was also a fever for him pre-transplant. She ordered for a chest xray to be done this morning & will order secretion cultures to be obtained.[...]
Perry got to actually speak to his father on the telephone during the evening trach collar trial to tell Sam that he is trying really hard, to wish Sam best of luck & well wishes for his upcoming surgery on the 9th, & that he loves him!!!! Sam & Perry were both elated to get to actually converse as was I!!!! I think it was the first time Sam really may have liked talking on the telephone!!! [...]
Pending... Brief update: Good day but very tired with increase in oral & trach secretions. Walked a few steps with EVA walker & assist Was able to complete 3 episodes of trach collar trials 42 minutes, 61 minutes & 48 minutes. Sat up in chair at bedside x 2 today