This will be long. I've never been one to give the "short story" so sit down and read if you have a few minutes...
Let me preface this by saying I only write these words with the upmost love and respect for my brother. I also write this with Janiece's permission. It's difficult to do, because of the (ridiculous) negative stigma that sometimes follows this type of problem. But this is real, and Scott has no control over this.
I think we all expected some "bumps in the road" but no one was prepared for this type of battle.
Two nights ago, Scott became increasingly confused. Janiece and sweet Shelby were with him that night, and the night was long and terrible. Scott did not know where he was or what was going on. He was confused, but he was not angrily confused at the time. Janiece and Shelby were up all night with him, trying to comfort him.
Initially, it was believed that the confusion was the result of a medication reaction. Scott is not on many medications. He was only on one antiobiotic (Unasyn) at the time, a diuretic (Lasix), Potassium, and the very rare, occasional pain medication. He had one dose of pain medication (in 24 hours) and he was given this many hours before the onset of his confusion.
On Monday morning, blood work was completed and there were no significant findings or changes from his previous lab work. As has been the "normal" for Scott for the past 11 days-his platelets were low and his sodium was low. Nothing that they thought would have caused his confusion.
Another thought was that Scott was confused because of continious sleep deprivation-hence the order for no visitors. Only Janiece, Shelby, and our parents were here on Monday morning/afternoon and they were only in the waiting room and not in Scott's room. The hope was that Scott could get the much needed rest he needed, if his environment was quiet and people free.
Unfortunately, sleep would not come. At some point during the day, Scott started pulling on all "foreign objects" on his body. This included his central line (the line that goes in his neck to give meds and get labs-he pulled it out about three inches) and one of the vacuums on his leg.
I received a phone call at around 7:30 last night to come to the hospital asap. Scott was more confused, and angrily confused at this point. He did not want to take any of the medications that he needs to get well...he wanted me to look them up for him because in his mind, everyone had ill intent. He recognized and trusted his family but he did not trust the medical staff.
By the time I got there, Scott was sitting up on the side of the bed and trying to leave. He did not know he was in the hospital or anything that had happened to him in the last 11 days. He did not understand why he could not just get up and walk out of here.
I looked up the medications for him, per his request, but he refused to take them then. Finally a bit later we were able to give him some medication to help calm him down and decrease his anxiety. This helped momentarily and he laid back down in bed.
The doctor was there and thought that a few things could be going on with Scott.
1)Another infection of some sort.
2)Sleep deprived confusion
3)Medication reaction
Janiece, Shelby, and I stayed in the room with Scott and willed and prayed for sleep to come for Scott. It did not. He did not sleep for one single minute last night. I should know, neither did I! He wanted to get out of bed, he wanted to pull everything off of him. He did take his medications from me, when I promised him that I had got them for him, and they were safe to take. The medications did not help him at all.
At two am, he was given a blessing--That he could be calm, that sleep would come, that the medications would work.
At three am, Janiece and Shelby went to the trailer to try and sleep. They had now been two nights without rest. Our parents came and I continued to stay with him. Sleep still evaded Scott and he was fighting some battle that only he knew.
At four am, the doctor came in to evaluate Scott, again. The doctor pulled out his central line (the rest of the way). He thought that the central line could have been a source of infection and it wasn't working right anyway, since Scott has pulled on it early in the day. They started a new IV (in his left arm) and drew blood for some further lab testing. This was not the same doctor that had previously seen Scott and he felt confident that Scott was septic (full of infection) again and this was causing his confusion. He started Scott on two more antibiotics (so three total, now) and we waited for the labs.
The lab results showed a few things...all subtle but all could contribute to his confusion.
1) Scott's lactate was 2.8. This result is high but not "scary" high, but something to monitor. It's elevated result could be showing the beginning of a new infection, for Scott. (Lactate can show a few things...a severe infection, and liver function among others. Obviously, these two were the things we were specifically looking for).
2) Scott's ammonia level had gone from 16 to 28 in less than 12 hours. This isn't a high result, but the fact that it had increased so rapidly was concerning. The liver is responsible for converting ammonia into urea and then it leaves our bodies through our urine. An elevated ammonia level can result in confusion. It also means Scott's liver was not converting the ammonia like it should.
3) Scott's urinalysis (a quick test to see if the urine has an infection, or blood, etc in it) came back questionable for a UTI. An undiagnosed/untreated UTI could lead to confusion.
A brain CT scan was also schedule today to rule out any problems there. This has not been done yet.
Scott still did not sleep and his confusion did not subside despite our best efforts.
Around 9:00 this morning the internal medicene doctor came to see Scott, as well as the surgeon who did his amputation. Both of them were very concerned about Scott. The surgeon felt like a contributing factor to the confusion was Scott's poor pain management. Most of this is Scott's choice-he did not want to take the pain medication and has had very little for having an amputation. The surgeon thought that his could have triggered his confusion.
Scott had a PICC line (basically a long term IV placed in his arm)placed late morning, to give him the iv medications he desperately needs. He had no improvement in his confusion this morning.
A specialist also came this morning and said Scott had "Medical Delirium." Basically, an acute onset of confusion that could be contributed to any of the things, I wrote about in this post, as well as a big list of other things.
Finally, he feel asleep for the first time in two days, today at 2:00pm. It is now almost four and he is just starting to stir a bit.
We are all very concerned for Scott. The doctors are very concerned for Scott. Something is definitely not right. They are considering transfering him back to the ICU tonight.
Out of all of this, the one line that the Doctor said that keeps running through my head is "this is temporary." It's so difficult to watch Scott be so confused. I told a tearful Shelby last night, to remember that this isn't Scott. It's easy to know this, because if you look into his eyes, you can see it just isn't him. He looks scared and it is heartbreaking. We know he will not remember this and we only pray that we can forget it also.
