Today was a very long day filled with multiple procedures, poking and prodding... none to Perry's liking.
Last night's report was a restless one for Perry. He was continually moving his hands towards his tubes and what we think was his head (will speak more to it below), to which the nurse believe he was trying to take out his tubes so they put special mittens on his hands to prevent this from happening. His blood pressure also dropped overnight.
The first planned procedure for today was the removal of 2 more of his chest tubes. He is now down to 5. We also received word that the final report of his x-rays last night showed that his feeding tube was actually NOT placed correctly even though initial report was that it was, so they needed to remove and replace the feeding tube again today. After 4 attempts and x-rays, they were still not able to get proper. Very uncomfortable for Perry. They finally called in the Gastrointestinal (GI) team for and EGD to assist in placing the feeding tube as they have more tools and are more equipped to adjust the feeding tube properly, and this required another signing of consent from Misty as this is a more technical procedure.
After a few more attempts, the GI team said they were also not able to get the feeding tube placed due to a good amount of solid food backed up in the lower part of his stomach and into the small bowel. So there will be no nutrition for him tonight as they will try to flush this out and try again tomorrow. This procedure will be done by a different team and required another signature of consent. On a positive note, they were able to relieve a large gas bubble to hopefully alleviate some of the pressure in his abdomen, however he is still very distended.
Perry had been running a fever for the past 3 days, and the Infectious Disease doctor did not like that. She ordered a myriad of cultures to be drawn to see what the issue could possibly be. Throughout all of this, we also learned that he has gallbladder stones and some of his symptoms could be a reference to pancreatitis. An ultrasound was scheduled for 7PM this evening to look into these issues further and decide of surgery was necessary, however when the ultrasound tech made her way to Perry, he was started on his first 3 hour regiment of dialysis and the ultrasound was not able to take place. They only have 1 ultrasound tech, so we are still not sure when the next available time for this will be. Misty is a bit alarmed to this because pancreatitis is a very serious issue and if ruptured many other major complications could come with it.
The few times that everyone was able to see Perry today, he seemed very uncomfortable and continually fidgeting around to find a comfortable way to lay. He was complaining that his back was hurting and he wanted to be on his side at times, other times he wanted pillows under his legs and he was continually raising his arms/hands toward his neck/head area pulling at some of his tubes again. On a positive note, what originally seemed to be involuntary movements were very voluntary and were a response to pain/discomfort. A lot of this seemed to be stemming from the EEG electrodes attached all over his head and we were able to bring him some level of comfort by scratching his head and that alleviated his arms/hands for awhile. Later in the evening, he continued to reach for the electrodes and pain level seemed to be increasing as you could tell his was writhing in pain from his facial expressions and he was mouthing words like "fire", "hot". We would like to see him be taken off the EEG at least for a bit (the plan for them is currently Monday). During this time, he was also able to mouth the words "can't breathe" as he was having troubles so the suctioned him and were able to curtail that after a bit. This could be an effect of all the other things going on today making him feel as if he couldn't breathe also because his oxygen levels were 100% during that time. They gave him more fentanyl to help ease so of his pain (he had been off the IV of fentanyl all day and started with a fentanyl patch).
He is resting now and seems to be more at peace, however we have see some shifts high and low of his blood pressure and the nurse is monitoring that to administer drugs to bring his numbers to normal. The charge nurse again decided that Perry should be on 1 to 1 care, so he now has a dedicated nurse again.
It was difficult to see him be uncomfortable all day, try to move himself and move his hands to alleviate his own discomfort without being able to do so; however his reactions, ability to focus, communication and motor skills were on point today. He was able to move his legs/arms on command, guide our hands to his problem areas, mouth clear words and zone in to others when speaking to him with clear nodding acknowledging he understood.
In my eyes (Michael) today was a win for his brain and proof to us he is still there, however we now have a completely new set of obstacles to focus on. He has definitely undergone a massive sequence of unfortunate events, and we hope nothing more will add to this lengthy list, but he has continued to show us how much of a fighter he really is. Perry has without a doubt been through a tremendous amount of adversity that has tested his body, mind and spirit and those also by his side have had their own struggles to deal with during these times. Please continue your prayers for Perry, Misty as well as the entire staff that have worked with Team Perry to this point (and those to come in the future).
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!