Still Fighting with a Reasonable Chance

Hello All,

First, I think there is some confusion among our family and friends. I am Aunt Sissy, also known as Jennifer Diane Wilson. I'm not Jennifer Noel Wilson. That is my sister-in-law. I am John Wilson's sister and Collin's mom Julie's sister. I know it is confusing, but it's okay. : )

Collin is doing about the same today, a little better. Three organs are being considered "failing" at this point. Lungs, kidney, and liver. His kidneys began failing two weeks ago, as you all know. That is why he is on dialysis. His lungs are inflamed and he has a pulmonary edema, which is worse today than yesterday. The lungs are considered failing because he is pretty much dependent on the ventilator again. Today, when I went to visit him, he was breathing a little on his own for a short time. There is a monitor in his room that we can see what they have the ventilator on, and we can see the lines- the line is green when the ventilator is breathing and purple when he is. Plus, we can see when he is breathing some because the number they have it set on is up there, and if the number that is his breaths is higher, that means he is breathing a little on his own.

Anyhow, They are doing respiratory therapy on his lungs as well as just keeping them clear so they can heal. At this point, they are worried about fluid developing on the lungs. There is no fluid yet, but they do a chest x-ray every day to check. If he does develop fluid on the lungs, they may have to put a chest tube in, which is a last resort because we don't really want him to go back under anesthesia. But, if that's what we must do, then we will do it.

So, the biggest concern right now is keeping him comfortable and stable so that we can treat the liver failure. That is the primary concern because they cannot even try to treat the liver until his blood pressure is stable for at least 48 hours. Right now, his blood pressure is still yo-yoing like it has been for the last few days, but they have started taking several measures to get it under control. It seemed more steady tonight, though it is still low.

There is two options for treating the liver failure once he is more stable. First, there is a "clotbuster" drug that is often used, but the doctors say it is not effective for patients in his condition because his problem is that his liver is inflamed, and as a result the blood is not getting through it properly. That is causing it to back up. His skin is yellowish as a result. The drug causes serious side effects, mostly bleeding risks. So, this is not even an option for Collin.

 The second option is a new drug that is in trial right now, so it is not fully approved by the FDA yet. it is    derived from the DNA of pigs. It was originally used in heart patients but it was not effective on the heart. However, the doctors are hopeful because it was found to help reduce the type of inflammation that is in Collin's liver. This drug also has some side effects, including bleeding. They are going to try this drug if he gets stable and Julie doesn't change her mind (she already signed the consent for it in case she is away at the move tomorrow).

So, when he has a stable blood pressure for 48 hours and the doctors are satisfied that he can handle it, they will probably try this drug. With the drug, the doctors are guessing that his liver has a 30-50% chance of recovering, while without it they are guessing it has a 20% chance of recovering. Of course, they do not know for sure, but that is their guess.

Julie asked one of the doctors what his odds of survival are, because that is what is on all of our minds right now. I mean, to be realistic, multiple organ failure is extremely serious, with grim odds. However, the doctor said that he has "a reasonable chance of recovery" and is "hopeful that he will come out of this." So, they are definitely not giving up yet, but Julie made it clear that she does not want them to "sugar coat" anything, and tell her everything clearly and frankly.

Julie spent the last couple of days getting their new house ready. They are moving to their new house tomorrow, on schedule. So, if you are available, we would really appreciate some extra hands. If you would like to help, send me a text at 317-430-0805 (or call me or email me at jenndwilson83@yahoo.com - text is best but I'll do my best to check email tomorrow) and I will give you the addresses. If you already know where Julie lives, we are meeting at her current house at 9 am to start moving. Painting her new house was a good stress reliever for Julie, and it got her out of the hospital for awhile while Collin rested.

Right now, visitation is going to remain extremely restricted. They are only allowing a couple of people in the room at a time, and they really do not want a lot of visitors without giving him a chance to rest between them, because he gets really anxious when visitors come in the room. He is still at the same level of consciousness that he was on Sunday when he first woke up. Tonight, he was a lot calmer than yesterday. That is probably because they started a new pain medication today in addition to the one he was already on and the sedative he was on. The new pain medication is being used because he is on a dangerously high level of the other medication but they must get his pain under control. It seemed much more controlled tonight, though it is still present. That is why we are asking everyone to not come to the hospital right now. If you are a family member, call me if you want to visit and we can make arrangements. We just have to make sure we have some sort of schedule so that he does not get overwhelmed.

Also, please limit phone calls to Julie, she is still very overwhelmed right now. You are welcome to send her texts telling her that you are thinking or praying about her or whatever, just don't ask a bunch of questions. You are always welcome to contact me at the number above or my email address and I will do my best to respond to you. Sometimes it takes me a minute to get in touch with Julie, so please be patient. : )

Overnight last night, Collin's white blood cell count went from 6,000 to 18,000. I am not sure what is normal, but it seems that is a good jump!

Collin is also having some problems with his skin breaking down as a side effect of the stem cell, chemo, and kidney failure. He has some pretty serious blisters on his body. He is also still struggling with mucusitis, which is when his mucus receptors go into overdrive as a result of the treatments and produce too much. Since it cannot really go down his throat because of the ventilator, it comes out of his mouth and is blood colored because he has mouth sores and is having some oral bleeding. That is the only bleeding he has at this time, and they are giving him platelet transfusions to counter it and keep him as strong as possible. But, it is a little upsetting to see the poor little guy with his mouth all messy! And, of course, being Collin, he won't let the nurses clean it much (even though they just have to at a certain point) - he bites down and doesn't let them clean his mouth out and gets really mad when they clean around it. I guess that is a good sign, he always has hated it when he had to do anything he didn't want to, so this is normal! : ) Seriously, though, they are trying to keep his mouth clean with a special mouthwash that has lidocaine in it, because the mouth sores and the sore on his lip won't get better otherwise.

The big problem is that anything that is touching his skin for an extended period of time was causing it to blister and break down. He has several sores and blisters all over his body, but tonight they seemed to be getting better. They have his arms restrained right now because he is moving them a lot, and there is too much danger that he will pull his vent out or something.

As you can see, it is kind of a circus right now with Collin. They are trying to keep one "ring" going while the others are going, so to speak. It's like they get one issue under control, but it causes or aggravates another. So, it is a balancing act and a waiting game right now. We just have to wait and see what happens. We are trying to encourage people within earshot of Collin to speak positively when they around him, and not to discuss his treament in front of him because he probably doesn't understand what is happening. We try to explain it to him as best we can, but I just told him tonight that undergoing the mouth care and other things he hates is like doing his homework, paying taxes, going to school, doing chores or going to work: we don't always like to do it but it's just one of those things that we just have to do. He often times scrunches his face up when people are talking to him, and when he is mad his face turns red, just like always! He is opening his eyes a little, but not a lot.

He has a lot more muscle control, it seems, in his arms than before. We are trying to take his arms out of the restraints as much as possible to allow him to stretch and move around, if someone can watch him and make sure he doesn't grab anything. He is really quick! Today, Julie took his arms out of the restraints, and he put his arms out in front of him and locked his hands. He was lying on his side. Julie said it looked like he was praying. She said it was really cute. Last night, we took his arms out and he seemed to move them a lot more controlled, not as random and as twichy as they were on Sunday. He would raise them above his head and grab at the face mask he has on that is holding the vent in place. Julie said she isn't sure if he is trying to get the mask or his ear, they are close together.

That is all I can think of right now. Like I said, feel free to contact me at any time, by email or phone (text or call). Please limit phone calls to Julie and call before going to visit if you are family. Again, we need manpower tomorrow for the move, let me know if you want to help! : )

Thank you so much for your patience, love, and support during this difficult time. We cannot tell you all how much we appreciate your support!! Thank you for being patient right now with our communications - we are trying to keep them going, but sometimes technology doesn't work! Like when I used up my phone battery after two charges today!

Love,

Jenn Wilson
"Aunt Sissy"
317-430-0805
jenndwilson83@yahoo.com