Perry was awake almost every 45-60 minutes throughout the night due to continued watery stool leakage around the FMS, need for extremely gentle cleaning, repositioning, & applications of extremely thick coating layers of Cleveland Clinic Skin Protectant Paste to treat & try to prevent further skin breakdown. Fiber supplements were administered to help bulk up the consistency of his stools; however it will take several days before those effects will be seen. The weekly Wednesday post-transplant nasal swab for Staph Aureus was obtained by Jennifer RN. She planned to check with Dr. to have the order discontinued as it is intended to be obtained while the mediastinal chest incision is still healing & since Perry’s healed very quickly, there’s no indication to continue. His morning lab draws from his L groin Trialysis catheter were with a sluggish blood return. Jennifer RN checked with Audra RN to inquire about how recent blood draws had been from his Trialysis catheter, & she informed her that she has had to place Perry’s leg in a few awkward positions to get a blood return so it seems to be positional.
Dialysis was started @ 703a. Dean PT stopped by in hopes of a morning PT session, so he’ll plan to work with Perry later in the day. Dialysis had to be stopped @ 808a after several attempts to troubleshoot alarms that were indicating air in the line.
Dr. Akindepe & Pulmonology team rounded @ ~915a. Dr. Akindepe was able to speak with Dr. Yared regarding yesterday’s bronchoscopy findings. He was pleased with results & will continue the anti-biotics & other nebulizer treatments. If the C-Diff stool culture comes back negative then they should be able to discontinue the Ciprofloxacin & Vancomycin. He plans to have Perry undergo the next bronchoscopy on Friday. He is continuing to coordinate a family meeting on Monday.
Perry slept when he could in between & both Tina & Dean PT stopped by on other occasions to see if it was a good time for PT session but Perry remained asleep.
Rachel RN attempted to get blood return from L groin Trialysis catheter with sluggish results. Cathflow was administered to help break up any possible occlusion (clot) in the lines.
Dr. Fatika & Nephrology team rounded to check the Trialysis catheter due to the reported difficulties during this morning’s dialysis as they were concerned that the dialysis access was going to have to be changed. Unfortunately, Perry’s subclavian vein anatomy proved to be a challenge as both the L & the R subclavian veins were penetrated during insertion in August so he has very limited access sites available. Fortunately, it was determined that the access site is still viable. Dr. Fatika will inform the Dialysis department to continue with a dialysis session today as perhaps there was a mechanical issue instead indicating air.
Perry was started on CPAP @ 1p & was able to tolerate it until about 445p, but we convinced him to try to go until 5p. Nick RT came back at 5p but Perry was asleep, seemingly comfortable, with oxygen saturation @ 100% & so I recommended not to switch over yet. Perry awakened on his own @ 515p & requested to be taken off of CPAP. He has not done any capping since Sunday.
Camille RN from Dialysis started the continuation of his dialysis treatment @ 352p until 552p with a total of 1 L removed without further difficulties experienced. He was able to sleep a majority of his treatment.
The stool culture results are negative for C-Diff which is once again a huge triumph although he continues to have watery stools. Fiber supplements continued to be given. His formula feedings have remained @ 40 mL/hr rate so feeding amount is still reduced from his normal rate which is 60 mL/hr. Perry continued to require frequent cleanings due to leaking around the FMS, repositioning, & lots & lots of Cleveland Clinic Skin Protectant Paste applications all day long.
Sasha is his assigned night shift RN starting @ 7p. This evening Nick RT had Perry complete 2 episodes of bed percussion & vibration during his nebulizer treatments which helps loosen lung secretions. He tolerated both episodes without discomfort. He also has not complained of discomfort or difficulty breathing today with his TOBI nebulizer treatments, so hopefully that will continue to be the case. He remains very anxious almost 24/7 with regards to having his “clicker” in his hand at all times with thumb positioned over the nurse’s call button. He requested Melatonin to help him sleep tonight. It is 1052p now & he is asleep. Hoping he (we) will be able to get a decent night’s rest without as many awakenings, & he will be able to bulk up on fiber supplements since he’s not able to have turkey & all of the favored traditional Thanksgiving fixings this year. One thing for sure though, we still would be passing on those candied sweet potatoes!!!!! Ryan & I have received an invitation from the Transplant House of Cleveland to join a Thanksgiving dinner @ 2p & from Ally & Matt to join Ally's family for Thanksgiving dinner @ 4p. We are very anxious to get to see Ryan on Thanksgiving & Friday; Perry's childhood friend, Rick Glomb on Friday; & Michael on Saturday, Sunday, & Monday.
We wish you all a very Happy Thanksgiving with many, many blessings. All of you know what Perry & I are most thankful for this year - the gift of life, the many prayers, the miracles, & all of the loving support you each have given. We know there has been a lot of hard & very sad times for so many of our family & friends this year, but we have faith & we all truly have so much for which to be thankful. Please know that we love you all, extend hugs from a far, & are so very thankful to have you in our lives!!!! As my Grandpa Frosty would say, “Bless our association together!!!”