The Plan

Hello All,

I apologize that we were unable to get a post up last night. Things have been insane these days, and both Julie and I were exhausted last night.

Yesterday, I went up to sit by Julie's side and help her in any way I could. Fortunately, I got to speak with the doctors alongside her. I wish Heath could have been there, but he is working really hard at his job and keeping the home front running. He is awesome and we are so blessed to have him.

Anyhow, Julie told the doctors that she does not want Collin to suffer through treatment if he is not going to survive. I am so proud of her, she is being so brave for Collin and really looking out for his best interests, against her own personal wants. She told the doctors that she does not want to prolong his suffering anymore than we have to, and that if he is not going to survive, then we need to think about stopping treatment. The doctors told her that was a reasonable request. However, they asked that she let them try the new trial liver medication, as a last ditch effort, because they believe that is the last thing they could possibly do to help him. Of course, Julie agreed.

The doctors and Julie agreed that they would give it until Thursday or Friday. If Collin is not showing improvement by then, Julie will start making a plan to stop treatment altogether on Collin. At that time, we will notify you, our amazing and loving friends and family, and it is likely that everyone will be permitted to visit one more time. This is, of course, tentative. If you wish to come see him now, you are welcome to do so. Please see below for information on that.

With regard to the liver medication, the doctors are not optimistic that it will work. They wanted to try it, even though it could speed up the inevitable by causing his blood pressure to drop, because they believe it is the last thing they can try to help Collin. His liver enzymes were a little lower today, but not as much as they were hoping.

The CT scan yesterday told us that Collin's bladder was the size of a volleyball. The doctors said that it is likely that the pain medication is preventing him from urinating, which is attributing to his discomfort. So, they put a catheter back in to help relieve some of this pressure. They also noted that his heart is healthy, but his lungs are still declining. They are pretty much in "failure" officially now. They also discovered that he has a fungal infection of the lungs, which is filling his lungs with fluid. They are putting him on an anti-fungal medication, but the problem is that this medication could cause further kidney and liver damage. They also sent a sample of lung fluid off for testing, but it could be awhile before we get it back. Honestly, that test is not likely to make much difference.

Collin is also still bleeding through his mouth very excessively. They are doing their best to control it, but they do not want to give him any more clotting medications than necessary because they don't want more blood to clot in the liver. We are chasing our tails because we want the blood to clot in his mouth, but we do not want it to clot in his liver, because it already is clotting there and blocking his liver more and more. His liver is very swollen at this point and inflamed. It is putting pressure on his diaphragm, lungs, kidneys, and other organs and it is making it even harder for him to breathe, which is why the fungal infection in his lungs developed - he cannot take deep breaths to clear out his lungs.

The liver medication that they are going to try has a very high risk of bleeding and dropping his blood pressure, especially since we are trying it without him being stable for 48 hours first. But, the doctors were hoping that it would maybe reduce the inflammation in his liver enough to allow his liver to start regenerating itself.

Julie asked the doctors if Collin does survive this, what kind of long term damage he might suffer. They informed her that the liver and kidneys are very good at regenerating themselves, especially the liver. They said that if he survives, his liver and kidneys will not likely have any long term damage to them. The problem is that he is so sick right now, that they are not sure that either organ will be able to regenerate itself because of the extent of the damage and the other factors attributing to their failure/damage. However, the doctors said that he will likely suffer from long term lung damage from this ordeal, and there is a slight question of brain damage, but that is small, if any.

So, at this point the doctors are just letting Collin rest, and they are giving him the liver medication every 6 hours. It takes 2 hours to administer a single dose. Last night, his blood pressure was too high, but by the time they gave him the second dose at around 11:30 p.m., his blood pressure was too low again. The fear is that it will drop to fatal levels as a result of the medication, but the doctors, Julie and our family decided that it was worth the risk if it could possibly save his life. They doctors asked Julie that if his blood pressure were to drop to the point where he needed CPR and possibly defibrillator (I.E: resuscitation), does Julie want them to attempt it. They advised her that it was not in Collin's best interest and could be painful. She agreed and informed them that she does not wish for them to resuscitate him if that becomes an issue.

Yesterday was quite an exhausting day for Collin, going to CT scan and the lung scope, so today they are just going to take it easy today. The new pain medication seems to be doing a good job of making Collin more comfortable. He doesn't seem to be getting quite as upset as he did before, though he still does get worked up from time to time. The doctors have ordered no more mouth care - meaning no more suctioning the blood out of his mouth or anything - because the inside of his mouth "looks like hamburger" and that is partially why he is bleeding so much. Further, his lips are blistered as well. They also determined that his gums are growing over his teeth because of not being used and other factors. He is using up blood transfusions, platelet transfusions, and other blood product transfusions like crazy. They just keep giving them to him because he is losing so much blood out of his mouth.

I asked the doctor yesterday if they needed people to specifically donate blood and blood products to Collin. They said that it takes too much paperwork and time for it to get to Collin, and it is easier and makes more sense for people to just donate to the general supply to help replace what Collin is taking out of it. So, if you are able, please go donate blood, platelets, and other blood products so that we can replace what he is using up so there is plenty for him and other patients in Indiana. The doctor said just go to the Indiana Blood Center and donate in Collin's honor. He even suggested that someone have a blood drive in Collin's honor to rejuvenate the state's supply.

Last night, Julie got to spend about 30 minutes or so playing with Collin. She sat in a rolling chair by his bed, untied his arms, and played with him. This entails him moving his arms with very close supervision as not to pull anything out, and Julie talking to him. He is still somewhat responsive to us, and the doctors agreed after watching Julie and I with him yesterday during the day. He is scrunching up his nose when people talk to him and opening his mouth. Of course, he cannot talk at all, mostly because of the vent in his throat and the blood. But, Julie said that she was playing with him and she looked over at the monitor, and his respirations were up to 30 something! They are set at 28. That means that he was breathing a little on his own. Generally, when he is agitated or playing, he will take a couple of breaths on his own. But, the rest of the time he lets the vent breath for him. They also had increased his oxygen levels last night for a short time, which could have attributed to him breathing.

That is all I have for now. I will get the latest posted as soon as possible. Julie is spending the night in Collin's room all week, so she may be even harder to get ahold of than before because of the no cell phone rules. Please let me know if you would like to help, if you have questions, concerns, comments, would like to visit, etc. We really appreciate the support you have all given us through this difficult time.

Again, if you want to help, go donate blood and platelets! Collin is using up a lot of blood and blood products right now and we need to make sure there is a healthy supply for him and other Hoosiers.

Do not hesitate to contact me! Julie is letting anyone visit at this time over the age of 18, except for minor siblings (other minors may be permitted later). If you want to visit, please contact myself or Julie. We will be meeting in the family lounge outside of ICU, and rotating into the room in shifts of 2 or 3 in order to avoid overwhelming Collin, the nurses, etc. So, please do not just go into his room without checking with us first. Don't hesitate to contact me if you want to visit. If you do not wish to do so, we totally understand.

Love,

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