Slow Improvement, Can Still Go Either Way

YESTERDAY, MARCH 12, 2011

Yesterday, they increased Collin's sedation because he had some problems with getting agitated overnight Friday night. They took him off of the epinephrine (blood pressure medication) for a little while, but then they couldn't get his blood pressure to stabilize. They even gave him some platelets in hopes that it would balance his blood pressure, but it didn't stabilize. So, they put him back on the epinephrine. As you recall, they took him off of the neuroepinephrine because they ran out of it, and it kept his blood pressure too high. Yesterday his blood pressure hung around the low 80s, and they want it in the 100s to 110s. They are getting frustrated dealing with his blood pressure and trying to stabilize it. Hopefully soon it will balance out. 

Yesterday they also discovered that his arterial line ("art" line) was clogged. They took it out yesterday, and they tried to replace it last night, but they could not, so they did it this morning. The "art" line is the arterial line that gives us a true blood pressure. The old one clotted, so they took it out last night. An "art" line gives us more accurate blood pressure than the cuff. They discussed weaning him off of his vent yesterday, but they decided to wait because they cannot take him off of the vent until he is off the sedation. 

Yesterday, his liver level went down to 9.7. Yesterday they said that his lungs look better and that they had taken 1,250 ml of fluid out of his lungs since putting the chest tube in on Wednesday. They said the chest tube seems to be helping. Yesterday they said that his urine output has been a slow trickle with the catheter. They are concerned with the catheter because they do not want to leave it in because of the risk of infection, but they do not want to take it out because of the problem with his bladder overfilling again. So what they will probably do is take it out and then check his bladder every couple of days or something with a device (ultrasound type) that they can use at his bedside to check to see if his bladder is full. Then they can put in a catheter just for awhile to drain his bladder. 

Yesterday his oral bleeding was about the same as it was the day before, but not as bad as it was on Monday. His skin looks a lot better than it did a couple of days before, his blisters and sores are really starting to dry up and heal. However, he is still developing new blisters, but just not as fast and as many at one time as before. Yesterday they found a new skin tear in one of his armpits, but they caught it early enough that they think they will be able to control it. Also, he is not moving his legs and arms as much, which is helping to keep his skin tears from going out of control like they  did before. They are using "Riley Butt Cream" on his blisters and dry skin and it is really helping. 

Yesterday, Julie got to get away from the hospital for a few hours and went to Kasey Susannah's basketball tourney. Then she went with our parents and our brother's family to the Flower and Patio Show for a couple of hours. It was a good break for all of us, I think. We missed little Collin though.

After her time out, Julie and I went back to the hospital. When we were looking Collin over, I noticed his fingernails were getting long. I asked the nurses if they could clip them or if I could. They told me that they are actually not permitted to clip them. They said it was against hospital policy because of the risk of nicking him (which is so easy to do when you clip kids fingernails, so I don't really see why they are prohibited, but I'm sure some parents complain). They said we could do it though. So, Julie and I got some fingernail clippers from our purses and started working on him. It kind of made us feel better to give him a little manicure because it let us actually do something!

 While I was working on his hands, they said they needed to rotate him. Julie left to check on her friend because her friend had gotten a call from the hospital and Julie wanted to make sure everything was okay. (Everything was fine, the child was just vomiting again, long story.) I helped the nurses by putting some cream on his blisters, sores and dry skin while they rotated him. I asked them how his back and bottom was doing, and they showed it to me. It looks awesome compared to how it looked Monday. The blisters are starting to dry up and heal. Now he looks like he has a peeling sunburn in some places. He is still developing new blisters and sores, but just not as fast and as often as before. Like I said before, the nurses are doing a good job catching the new skin tears and blisters and trying to control them.

After they rotated Collin, I was sitting in a chair by his bed working on his little manicure, when he suddenly lifted his head a little, opened his eyes (just a little) and looked at me like "what are you doing here?" I started talking to him and he moved his head and eyes a little. He kept falling asleep and waking up again for a few minutes. Then Julie came back into the room after checking on her friend, and as soon as Collin heard her voice he opened his eyes (just a little) and lifted his head a little and looked at her. We sat there talking to him for a while and then he started moving his arm a little, for the first time in about 5 or 6 days or so. Julie and I really wanted to stay and play with him, but by then it was between 1:30 a.m. and 2 a.m. We told Collin he needs to quit waking up in the middle of the night so we can play!! Right now, he has his days and nights all mixed up, like a newborn baby. Since he is so sedated, he doesn't wake up as often as before, but we would rather he be comfortable.

TODAY, MARCH 13, 2011

Not a whole lot changed today. Today his liver number went back up to 9.9 and they put in the new "art" line this morning. This is the second one they had to replace this week.

Today they went down to 26 on the vent, from 28 yesterday. They also went down on vent pressure, which is the force of the oxygen being pushed into his lungs. Julie wasn't sure how much they went down, but they went down some. Collin was taking a few breaths on his own, and he was fighting with the vent today. This means that he was trying to get readjusted to the new level. Fighting means he didn't have regular, steady breaths like he should - he would have a long one, then short ones, etc. They said that is sometimes normal when more than one thing is adjusted on the vent at one time. It is kind of like withdrawal symptoms for a drug, but he is having withdrawal on the vent. That is why they call it "weaning him of the vent." They are not officially weaning him off the vent, but they are kind of testing the waters to see what he will do. The doctor wants to encourage him to breath on his own, but he doesn't want it set so high that he doesn't even try, but he doesn't want it set so low that he struggles to breath. They are trying to find a happy medium where he is comfortable but breathing a little on his own.

They did not do anything with his pain medication or sedation today. They did not mess with any medications today at all. His oral bleeding is about the same as yesterday, under control because of clotting and it is somewhat less in total amount. He has a lot of clotting around his mouth since they are not doing mouth care right now (because it was making it worse), so it is helping to slow the bleeding.

Skin still doing better, about the same as yesterday.  Swelling did not go down in his belly overnight. Not much else has changed in his overall condition.

That is all I have for today. Visitation is still open, so if you would like to go see Collin, just get ahold of Julie or myself. We totally understand if you do not want to go see him in his condition. As always, do not hesitate to contact me with any questions, concerns, etc. If I do not return your email or text after a few days, please resend it because I noticed today that I accidentally overlooked a couple emails. I apologize to those who sent those emails! Thank you for your patience!

Also, please remember that Collin is still using a lot of blood and blood products!!! Please keep donating blood/blood products in "Collin Neese's Honor" regularly!! Thank you!

Thank you all for your continued love and support during this difficult time.

Love,

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