Steady, Swelling Down, ICU Tan

Overall, Collin is doing about the same today, a little better than yesterday overall. Since things are so complicated these days, I tried to organize this blog post by "ailment" to help people follow the story better. I hope it helps! 

Mouth Bleeding: 

The bleeding in Collin's mouth is a little worse than it was yesterday, but not as bad as it was on Monday. They think that the reason it is a little worse is because his platelet count went from 100 yesterday to 50 today. So, they need to give him more blood platelets - please keep donating!! 

Lungs:

They are taking Collin off of one of the anti-fungal medications that is treating the fungal infection in his lungs. They still have not gotten back any positive cultures from the lab on the lung fluid sample they took on Monday, and they probably will not hear back on that sample for awhile. So we aren't sure precisely what type of fungal infection it is, but they are still using another anti-fungal medication and antibiotics to treat the lung issue in the meantime. 

They have not been doing a chest x-ray the last two days like they were doing every day before, but they plan to do another chest x-ray tomorrow morning to check on the lungs. The fluid in his lungs is still draining and is still reduced quite a bit, which is allowing him to use his lungs more than he could on Tuesday when they decided to put the chest tube in. So, this means that the chest tube is doing what it is supposed to, keeping the fluid out of his lungs so he can use them and get more oxygen and other chemicals into his bloodstream. 

Liver: 

Collin's liver enzyme level went down again. This time it went down to 9.9 from 10.3 yesterday. Normal is below 1. There is still fluid around his liver, but the doctors can feel one side of his liver, which means that some of the fluid is gone. Some of his belly swelling has gone down as well. 

Skin:

Collin's skin is looking a little better. He is still having trouble with developing blisters on his body in random places, but the giant blisters that were in his groin area and his armpits seem to be drying up and healing some. His skin seems to be getting dry and flaky, but it doesn't seem to be developing massive NEW blisters. We are still fighting with the old ones though. I don't know how his back and bottom are today. That was the worst part of his skin. The rest of the blisters appear to be drying out, so hopefully when they check his back/bottom they will be too. He still has an "ICU tan," meaning he looks yellowish brown in skin color because of the jaundice. The nurse told me yesterday that sometimes people turn more yellow, and sometimes they look yellowish tan like Collin does. 

Kidneys: 

Collin's kidneys are still not responding to the dialysis. They are still keeping the dialysis low to help give the liver a chance to recover. This is concerning all of us that the kidneys are not changing at all. 

Musculoskeletal System:  (Bones, muscles, cartilage, etc)

Today the doctors considering putting some splints on Collin's hands to help try to keep his hands and wrists from "curling up" any more - his fingers are curled in a fist like position because his muscles and tendons are starting to tighten up (see yesterday's blog post). One of Collin's nurses strongly objected to this proposal because she said that we don't want to do anything else to Collin since he gets so upset when we put stuff on him or touch him (like normal Collin, he has always hated being touched and messed with!), and she thought that hand splints would cause him to become more agitated and upset because he seems to get more upset the more things they put on him. So, they scrapped the idea for now, but just temporarily. I think they are trying to balance out his mental wellbeing with physical, and they probably figure that the splints can wait a couple more days or something. 

Vital Signs:  (Blood pressure, pulse, etc.)

The doctors decided to take Collin off of neuroepinephrine and put him on epinephrine for his blood pressure. This is partially because they cannot get anymore neuroepinephrine. His blood pressure is still remaining somewhat stable, but we are still having problems with it dropping when he gets upset or agitated - which is the exact opposite of what a normal kid does! Usually it would go up! His other vital signs are remaining pretty stable, though sometimes they are stable but high, or stable but low. But, I guess it is better to be stable and high or low than yo-yoing all over the place.

 His oxygen level is pretty stable, though this is partially because of the amount of oxygen in his ventilator. Often they will have more oxygen in the ventilator than what is normally in the air. So, it is misleading to think that he is absorbing oxygen properly when it is actually because they are giving him more oxygen than he would get out of regular breathing. This is okay, but it should not be mistaken for thinking that he can handle breathing alone yet. Further, his vent rate is set at 28 (unless they changed it in the last couple of hours), and he is still not breathing on his own much at all. However, he is not breathing under the vent either, so that is good. In other words, he is breathing at the same rate that the vent is set on, and he is still letting the vent do most of the work.  

Other: 

They are leaving the sedation and other pain management medications alone for now. They reduced the sedation a little yesterday, which I thought helped him move around a little more. He isn't moving his legs or arms at all, but he moved his head and facial features yesterday. He was somewhat responsive to us yesterday, which is good. Sometimes he nods his head in a "yes" movement. The respiratory therapist thinks that it could be purposeful response sometimes, but sometimes she said it is a cough. He also is scrunching up his eyes and nose still and opening his mouth a little. 

They decided that as long as he is not "digging" at himself, they are going to keep the sedation as it is. They want him to move his arms and legs around to keep the muscles loose, but at the same time they don't want him to start getting itchy again and start "digging," which is when he is trying to relieve the irritation and itchiness and causes more problems. We will see how he does over the weekend with this, but for now they aren't even using arm restraints because he isn't moving them much. That is good because it is one less thing that he has to have touching his skin. They cannot put anything on him without it causing a blister, so the less stuff that he has to have on his body, the better. 

The doctor also checked with Julie again with regarding to the DNR order - the "Do Not Resuscitate" order that provides that should Collin need CPR or shock paddles, they are to let him go and not attempt resuscitation. The doctor told Julie that he is still at the point where resuscitation will do more harm than good, not only would it be painful for him but it would likely cause brain damage and other problems. So, Julie opted to leave the DNR in place for the time being. 

His white blood cell count went up some today, but we aren't sure how much because the doctors didn't say. They aren't overly concerned about his ANC or white blood cell count right now because it has been going up steadily (though not a lot). They are also not overly concerned about the white count because it isn't as important of a figure as it was before because of the multiple organ failure. 

That is all I have for now. Thank you again for all of your support. Please keep donating blood and blood products!!! We are so grateful to you for everything you have done to help! 

As always, do not hesitate to contact me for any reason! 

Love, 

Jenn Wilson 

"Aunt Sissy" 

317-430-0805

jenndwilson83@yahoo.com