Still on a Downturn

Sorry I did not get an update up yesterday. I had a vicious migraine and I could barely move. So, for those who were trying to get ahold of me yesterday, I apologize that I did not respond. I was in bed all day and couldn't bear to open my eyes! I feel much better today, though.

Collin's bellireuben (liver enzyme number) went up from 14 yesterday to 14.6 today. The doctors do not know why his bellireuben is going up instead of down. Yesterday and today's rounds with the doctors were very quiet. Normally, there is a small herd of doctors and nurses, and they are all very talkative, throwing out ideas on what to do that day and such. But, Julie said that the last couple of days have been very quiet. Dr. Goebel, who is Collin's amazing stem cell doctor right now (they are rotated throughout the hospital, so Collin doesn't always have the same doctors), had the same look on his face today that he had on his face when we had the "care conference" on Monday, March 7th - the day that we thought we were going to lose Collin and we thought we were going to have to stop treatment soon.

The doctors are not making very many changes today to Collin's treatment. The only change for today is to cut back his feeds via the NJ tube by half. They have been giving him lactose free Pediasure, diluted with Pedialite. There is still no bowel sounds or bowel movements. This is day three of Collin getting feeds through the NJ tube to try and stimulate his bowels, with no luck. Additionally, his belly is swelling back up again, and it has become hard to the touch again.

Basically, Collin has the doctors stumped at this point.

Yesterday, Collin had to have another new "art" line (arterial line, the one in his arm that gives the most accurate blood pressure read and allows for blood draws). It took the medical staff three tries to put it in because Collin has so much scar tissue on his little arms. They are running out of places to put things! First, a nurse tried, then a resident doctor, then a staff doctor tried and finally got it in. They have replaced that line several times because it keeps clogging up or something. Poor Collin, he is like a pincushion right now! The doctors and nurses are trying to prevent it, but they have to have that "art line" because of the blood pressure problems. The new line is in his right arm.

Yesterday, physical therapy and occupational therapy came to see Collin and they brought down a little splint for his left hand. It is just a soft piece of material that crosses the palm of his hand, and then goes across the top of his hand and wraps around the writs. There is a soft cylinder in the palm of his hand to prevent his hand from "clawing" any more than it already has. "Clawing" is the term used to describe his  hand being curled up into a fie

 PT and OT came down yesterday and brought down a little splint for his left hand. It is just a soft piece of material that crosses the palm of his hand, then goes across the top of his hand and wraps around the wrist. There is a soft cylinder in the palm of his hand to prevent his hand from “clawing” anymore. “Clawing is what they use to describe the hand pulling into a fist because the tendons and ligaments are tightening up from non-use. His hands and legs are both doing this. They cannot put a splint on the arm with the "art" line in it, so they just put a washcloth in that hand (his right hand). They also put some soft splints on his legs as well to help keep those ligaments and tendons from tightening up. They are soft, unlike the hard walking splints he had before - the ones with the motorcycles on them.  As we would expect, Collin does not care for these splints at all!! 

Collin is still receiving a lot of platelets and blood transfusions. His white blood cell counts are good, but we are struggling to keep his platelet counts and hemoglobin numbers up. Hemoglobin is from the blood transfusions. So, please keep donating blood and platelets in honor of Collin Neese to make sure there is plenty of blood and platelets for Collin and other Hoosiers! We really appreciate it! 

Also, if you are interested in donating for the date night for Julie and Heath, please have all of your donations to me or postmarked to P.O. Box 531, Greenwood, Indiana 46142 by Tuesday, March 22, 2011. Once we have all the donations in, we will begin planning the event. Luckily, the older two kids have spring break starting a week from today, so that will help. If everyone could donate $5 or $10, we could make a very spectacular date night for Julie and Heath! I am also welcoming any suggestions you may have for what to plan. We want to keep some of it a surprise, so email me instead of posting comments on here!  Let me know if you are donating and if you have any questions or suggestions! 

Also, visitation is still open at this time. However, do not visit after 9:30 p.m. And, please contact Julie or I if you are interested in visiting. If you just show up on the ward without being escorted by someone the nurses know (like Julie or I), they will not let you into the room. 

Again, I apologize for yesterday, Julie and I were both feeling sick and did not respond to people in a timely manner. We appreciate your patience. If possible, please let us know a day or so in advance if you want to visit, that way if someone does get sick or if something happens with Collin (like an unscheduled surgery), we know you are coming and can plan accordingly.  

A bit of happy news, one of Julie's friends gets to go home today. This is not the friend whose son, "D", is in critical condition (the one I spoke of the other day). However, "D" is being moved out of ICU now. He is being moved back to the regular unit. 

As always, feel free to contact me anytime for anything. Thank you for everything! 

Love, 

Jenn Wilson 

"Aunt Sissy" 

317-430-0805 

jenndwilson83@yahoo.com