We discussed the situation with several people from the vascular team. I asked them to provide us with all the results because we felt like Steve still wasn’t sure what caused this entire situation and he was being faced with making a decision between doing a forefoot amputation, below knee amputation, or going home in pain for an unknown amount of time to see if his body could build collateral channels to increase blood flow to save his leg and just do the forefoot amputation – an amputation none the less.
My texts for the day:Date: Thu, Oct 20, 2016 at 7:15 AM
Steve woke up at 5:30 this morning in excruciating pain…a pain that he hadn’t felt before. His foot is no longer swollen & has turned totally grey, so the nurses thought something was obstructed. They verified this nerve block was in place & working. He went through about 30min of sheer pain before the bolus of nerve block kicked in. I’ve watched his foot literally change colors in front of me, from grey back to pink-red splotches. The vascular team should be in here any minute & I’ll give another update then.Date: Thu, Oct 20, 2016 at 10:51 AM
6 people from vascular came to see Steve this morning (acute pain management is here now). Vascular wants Steve to be pain-free to be able to make the best decision possible. I lost it on them a little this morning & told them we’re not getting proper communication. He’s being expected to make this life altering decision & we’re still unclear of the cause. They are getting us ALL the test results for to see for ourselves, but they’ve tested him for everything & all looks normal. They’re confident that this is all due to his Minimal Change Disease (kidney) leaking protein & his natural anticoagulant & that nothing else has cause the MCD.
I also just spoke to the hematologist who said the same thing – no other causes & he’s getting us their test results. In addition he’s consulting a third hemo Dr to look at Steve’s case to make sure they haven’t missed anything. And they will come back again today.
In addition they’re ordered one last thing, in their opinion, JUST for peace of mind…an echocardiogram. This will rule out a hole in his heart or additional clotting. His vascular surgeon will also come by today.
Please pray for controlled pain until Steve finalizes his decision & they get him into surgery. His changes of phantom pain increases dramatically if he’s in pain when they amputate.Date: Thu, Oct 20, 2016 at 7:43 PM
It’s been a busy day with lots of conversation with really no decision or direction. Steve’s been battling pain all day, even with the nerve block in place. They’re encouraging him to go home for a month+ to give his body a time to build collaterals for a chance to only have to amputate from the forefoot down vs just below knee down. However, not sure that Steve can endure his pain for another month, plus there are reasons why that could be bad. Of course he wants to save what he can, but he’s faced with quality of life decisions & it’s just hard.
We’ve also been given mixed messages/info so tomorrow vascular, pain mgmt., & podiatry will come talk to us at the same time to make sure we’re all on the same page.