Meeting with Doctors

Julie, Heath (Collin's step-dad) and I had a meeting today with two of the primary doctors on Collin's case. We just wanted to touch base with them and ask a few questions. Here is what we talked about (I broke everything down and organized it by topic, I hope it helps!):

Brain/ Head / Skin:

They said that the best way to look at it is from the head down. If his brain was damaged or there was some other issue there, then we would not be as hopeful. However, they do not believe there is anything wrong with his brain because of how responsive he has been toward us as well as the scan they did a couple of weeks ago. Of course, this is not a guarantee, but nothing is when you have a child this sick.

They said that the way that he has been responding to us is really encouraging. Today, he was turning his head a lot to look at Julie, mostly. Julie would sit in a chair next to the bed and rub his head, and he would nestle his head into the pillow and close his eyes, like he used to do when he was younger. And Julie would sing "Baa Baa Black Sheep" to him.

We also played some music for him as well as a voicemail from his girlfriend Ally and a voicemail from his friend Blaine, and he started blinking his eyes (though not opening them any more than just a slit) and moving his head around a little. He really liked it when he heard Ally's voice! He gave her a ring at the skating rink before he went into the hospital this time. Her mom and Julie always joke that they are going to get married someday! The nurses and doctors said we could play some music for him, but we have to be really careful not to overstimulate him. They said short periods of stimulation are best and to give him plenty of breaks and time for rest.

While I was up there today, the movie "Madagascar" was ending, and the song "I Like to Move It, Move It" came on during the credits. Collin, his siblings and I used to dance to and sing that song all the time. So, Julie and I were playing with Collin and singing that song to him. He seemed to like that, he was moving his head and eyes a little.

He still isn't moving his arms again, which is probably from the sedation. He moved his arms a little the other day though. In fact, they think that he may have cut his own ear last week. They came in to his room and found some blood on the pillow by his ear. Once they got it cleaned up, they noticed a cut on his ear. Of course, his skin is like paper, so it tears and cuts very easily. We think that he was reaching up to grab the face mask that is holding his vent in place and may have pulled on his ear. Of course, he isn't moving that much now, but like I said, that is probably because of the sedation. But, at least he is comfortable.

They took the strap off of his face mask that was holding the vent in place because it was collecting blood and it was irritating him further, so now he just has adhesive holding the face mask in place. The strap was also irritating his skin further, though the adhesive does too - but we have to have something holding the vent in place!

Heart/ Blood Pressure/ Bleeding in Mouth:

They said the next thing they would look at is his heart. They said his heart is healthy and strong, and though he is having trouble with blood pressure right now, it is not going to cause long term damage.

They said that the clotting in his blood is better today than it has been and that they are happy with the blood clots that have built up on his mouth and around the tube in his mouth because it is slowing the bleeding. They said the fact that the clotting is getting better shows that the liver and kidneys are improving a little because that is a function of the liver/kidneys.

The doctors are going to reevaluate Collin's mouth and are considering doing mouth care again, but they are not sure yet because they do not want to break up the clotting that has developed over the last few days. It is still a catch 22 because they want to do mouth care, but they don't want to lose the clots that are keeping the bleeding under control.

Lungs:

They then said that his lungs are better today than they were a week ago. They came down on the vent some in the last week. They said that long term, the longer he is on the vent, the higher the risk of long term lung damage. Further, the higher the pressure/settings are on the vent, the higher his risk of having long term damage. They have been trying to keep it as low as possible, and they said every time they try to wean him off the vent, they are reducing the risk of damage. They said that they have been keeping him pretty low and are hopeful that there isn't going to be any significant damage long term. If he survives this ordeal, they will bring him back after being out of the hospital for a couple of months and test him to see what kind of long term damage he may have suffered in his lungs. They reassured us that the lungs are also a resilient organ, not quite as self-generating as the liver/kidneys, but they will bounce back some.

There is one correction from earlier posts: the fluid that required the chest tube was not inside of his lungs, it was outside of his lungs. They said that they have not gotten any positive cultures back yet for infection - fungal or otherwise. They said it is not uncommon to have mystery infections on the ICU, and that it may not have been an infection at all. It may have been haziness from the irritation and inflammation that his organs are suffering from. They think that the lung fluid could be a sympathetic affusion. This was in his right lung. This means that the right lung, which is next to the liver, was "sympathizing with the sick liver" and was irritated and building up fluid as a result of the irritation and inflammation in the liver. Like it was "sympathizing" with the liver. The fluid was between the chest wall and the lung (plural cavity) and was squishing the lung, therefore causing the breathing problems. The liver was also squishing it, causing further irritation. This is how he explained it in layman's terms to us, which was very helpful!

He still has a small pulmonary edema, which is likely what is causing the lung fluid to still be draining from his chest tube - combined with the irritation and such that his lungs is having because of the liver. Overall, they are pleased with the improvement his lungs made in the last week.

Cancer/ Tumor:


At this point in time, the cancer/ tumor has taken a far backseat to the rest of Collin's ailments. They have not been able to even look at the tumor because they cannot use contrast in the CT scans or the MRI. A CT scan is much faster than an MRI (MRI takes 2-3 hours while a CT scan takes less than an hour). They are not too worried about the cancer at this point in relation to the other problems we are having. They did a CT scan with contrast a couple of weeks ago, but that was absolutely necessary to determine what kind of damage we were dealing with regarding the multi-organ failure. They won't be able to do an MRI or CT scan with contrast for awhile, so we won't be looking at the tumor anytime soon. FYI, contrast is the stuff they inject into a person's bloodstream when they are doing a test so that stuff will "glow" or "light up" and make it more visible.

Liver:

They said that the liver has begun to stabilize a little. They are not overly concerned about the billy reuben (not spelled correctly), aka the liver enzyme number having gone up a little in the last couple of days because they said it is going to take some time for the liver to stabilize, and once it stabilizes then it will start to improve (today it is at 10.5, yesterday it was 9.9, the day before it was 9.7). They said there are several signs that his liver is doing better: the fact that his belly is not as swollen, the fact that his belly is not as hard and is softer to the touch, the fact that he has not needed a "cpac" transfusion in about 6 days (this is a blood byproduct that provides clotting cells that the liver normally produces). The "cpac" transfusion is something that the liver and our bodies will produce on its own, and the fact that he has not needed this in a few days tells us that the liver is producing it a little. Of course, he is still using blood and blood platelets, so keep donating blood!!

They said the trial liver medication that they started last Monday, known as defibrotide (spelling likely incorrect) is not hurting him at this point, and it may very well be helping. they said he will need to be on this medication for at least three weeks minimum, and we are on day 7 now. This is why Riley Hospital is so amazing - these doctors took a big risk starting this medication when they did, and it may well have saved his life! We are not sure yet, but it is possible. We are so blessed to have these amazing doctors!!

They said overall, it can take 2 months, give or take, for the liver to completely heal. They said that the liver, like the kidneys, is an amazing organ that can regenerate itself once we stop "insulting" it. So, for example, if alcohol were the "insulting" factor for the liver, once you take the alcohol away the liver will start to heal itself. The problem is how much damage has been done on whether the liver can heal itself or not - of course there is a point of no return once so much damage is done. They do not think we have gotten that far. They are hopeful that the liver will start to stabilize and then start to heal.

I double checked with the doctors, and they said the normal billy reuben/ liver enzyme level/number is around 1 or 1.5-ish, give or take. They are hoping to do a liver ultrasound on Thursday or Friday of this week to evaluate the liver again.

The doctors also told us that the billy reuben/ liver enzyme number is somewhat skewed because of the fact that Collin has not had a bowel movement in quite awhile. They said that they enzymes and such that create this number are secreted by the body, and flushed out of the body through the bowels. However, if one is not having bowel movements, then the enzymes and such won't leave and will just hang out in the intestines or recycle through the body. The solution is to stimulate his bowels somehow.

One solution would be to put an NJ tube down through his nose and into his intestines, and then feed some sort of food product through the tube. They would likely use baby formula or something to that effect. That would likely stimulate his bowels and help flush everything out. Then, the liver enzyme/billy reuben number would be more accurate. They are considering this and other possible ways to stimulate his bowels. The big concern is that they do not want to break up any more clots than they have to. We will see in the next few days what they decide to do.

The liver enzyme/billy reuben number is a good indicator of his overall liver health, but because of the bowel movement issue it is not precise. The other factors I listed above, like the soft belly and reduced belly swelling, tells the doctors that the liver is doing a little better despite the liver enzyme number being higher than they would like. Of course, if the number makes a huge jump then that would likely be a problem, but for now they are not too concerned with the slight increase. Kind of like how it has to get worse before it gets better kind of thing.

Kidneys:

They said that between the liver and the blood pressure issues Collin is having, the kidneys are actually doing okay overall. Yes, they are still in failure and not working right, but they are not overly concerned about them at this point. They said they are having some urine output, and like I said earlier today, it is very concentrated which means that the kidneys aren't doing much filtering of the urine. However, they said that the kidneys can take quite a long time to heal - it would not surprise them if it took 6 months for them to heal. The doctors said that the kidneys are not a big concern because if they can get the other ailments under control, they can actually send Collin home on dialysis while his kidneys finish healing. They said that the kidneys are the "easiest thing to replace outside of the hospital" and so they are not as concerned with them.

The doctors said that Collin will probably not qualify for a kidney transplant, should that become necessary, until he is in remission from cancer for at least two (2) years. They are not talking about transplant right now, we brought it up because we were curious. They said that whole organ transplant is  such a huge ordeal for the body that he would really need to be healthy for it, and that is part of the reason for the 2 year requirement.

Immunity:


The doctors said that Collin has not had any significant fevers to speak of, and that his white blood cell count has been in the 30,000's, when they really only want it in the 3,000s. They said this shows that he "has a lot to fight with" because he has a lot of white blood cells and such. So, they are happy with how his immune system is building up again. They are hoping his white count comes back down to normal, but they said it is almost there and they are pleased overall.

With regard to the mystery infection that we think Collin might have in his lungs, they said it is not uncommon for an ICU patient to have a mystery infection with everything that they are going  through. They did not seem overly concerned about it, saying that he has a lot to fight with and it could just be inflammation, etc. rather than infection.

Overall:


Overall, the doctors and nurses describe him as being "stable unstable," meaning that he is stable for his condition, but still very sick and very unstable regarding overall health. Things could still go either way for Collin - he could recover or he could not survive. We do not know at this point what will happen, and neither do the doctors. However, they are really hopeful that he will recover and have said that everything that is wrong with him can heal, it isn't like he has severe brain trauma or something that cannot heal. So, we will just have to wait and see. For now, Julie is going to give it a couple more weeks to see what happens. Of course, this could change at any point, things are still very rocky for Collin. But, this is a tiny step in the right direction.

KEEP DONATING BLOOD!

So, the doctors are asking that we all still keep donating blood and blood products, because Collin still needs them and so do the other kids on the ICU, as well as other Hoosiers. Please, please, please keep donating in "Collin Neese's honor!" We really appreciate your help in keeping the blood supply up!

DON'T FORGET DATE NIGHT!


Also, please don't forget about Julie and Heath's date night! Please donate a little if you can! See the "Date Night" post from March 13 for more information, or email me with questions.

THANKS! 

Thank you so much for all of your love and support! We are so grateful that we have friends and family like you! Julie is keeping visitation open for everyone, so let us know if you would like to visit sometime.

As always, call, text, or email me anytime with anything. I don't mind, seriously! I have trouble explaining things on this blog sometimes, so if I confuse you, please do not hesitate to ask me to clarify. You can also leave a comment on a blog post and I will respond to that as well. Thanks!

Love,

Jenn Wilson
317-430-0805
jenndwilson83@yahoo.com