Liver doc check-up

Well it has been a year since Coltyn had his kasai and he seems to be doing well.  We did have that 1 bout of cholangitis but he seems to be recoverying well from it now.  His AST ALT and Bili are all NORMAL again!!! YAY But his GGT and Alk Phos are still high but they seem to be trending down, which is what we want. The Liver doc said that the 2 that are still high are the ones that take the hardest hit with cholangitis so she wasnt concerned.  I was so happy that Coltyn FINALLY gained some weight again!! It has been since February!!! He is close to 19 pounds!!! He hasnt grown much but I am going to wait and see what he does at his 15 month check up before I get worried about that!!! So all in all it was a good check up.  I am nervous about stopping his antibiotic again as last time we wound up in the hospital but we will stop that in a month then we will also stop his vitamins and see what happens from there.  I am crossing my fingers things go well so we can stay off them both but not holding my breathe. LOL Coltyn also got the OK to go to Florida in September!!!! WOOHOO!!!!! They did remind us that things can change on a dime but we will go forth and plan on heading down south in September unless something happens where we cant go, but we will just take it a day at a time like we do everyday!!! I HATE liver disease but we cant chaneg it and we just have to live with it. Things could be a tons worse then they are so I count my blessings each and everyday!!!! I couldnt ask for more!!! Coltyn is to follow up with LIver doc and Surgeon in 3 months since he had the episode of cholangitis a month ago.  Hoping numbers are all NORMAL so we can graduate to every 6 months!!! So his next appointment will be Septmeber 25!!!! I am also happy to report that Coltyn has taken a few steps and is crawling everywhere!!!!! It only took him 13 months to do it but he has!! :)

1 Year Post Kasai

Today Coltyn is 1 year post kasai!!! I am so happy that he has made it a year without a transplant and that he has done so well this first year. At this time last year we were walking down to the PICU to see out sweet little guy.  It has been a GREAT year with him in our lives. I still remember that day like it was yesterday.  I am so thankful for the doctors and staff at St. Louis Childrens Hospital that took GREAT care of him and still take GREAT care of him when we have to be in the hospital for anything. I remember the most crying most of this day last year as I had to hand my little 6 week old over to doctors to do a major (5 hour) surgery on to hopefully by him time before transplant.  Even though Coltyn is having issues now he has made it a year without anything major and we will get through this as well. I LOVE to see him smile and LOVE his little laugh as well.  He truly amazes me each and everyday!!! He goes next week Tuesday for a check-up with is liver docs and surgeon so we will see what our plan is from there.  I am hoping for good news but I have a feeling things arent going my way as he is having pale pale stool which means bile isnt flowing like it should, but we will burn that bridge when we get there.  I will take him at least being out of teh hospital to celebrate his daddy's 30th birthday and fathers day this year as last year we were in the hospital for both. So I will update with Tuesdays informastion once I know something. 

Update on the cholangitis

Well since the last post Coltyn got hand foot mouth which is a virus and they cant traet it with anything.  All they recommend is Tylenol for the discomfort which they said he couldnt have becasue of his liver being unhappy at the moment.  The GI doc's nurse called me on Monday and said to stop taking the Cipro and start the bactrim.  Bactrim was what he was on for the first 6 months post kasai and that we didnt need to repeat labs until June 19 when he is scheduled for his follow up testing and appointments.  If he gets fever, jaundice, or other symptoms that we know to watch for to bring him in to the hospital as he has the cholangitis back.  So we are waiting to see if things go our way.  I told him when I gave him his bactrim yesterday that he isnt aloud to get sick becuase it is daddy's 30th b-day on Saturday and he was in the hospital last year on his b-day and fathers day so he needs to be good and stay healthy so we can celebrate daddys b-day and fathers day AT HOME this year!!!! GI doc isnt to worried about labs beacuse she said things take a while to get back to NORMAL after cholangitis so we are just holding our breathe that things will get better and that we wont have anything major go on and he will be good to go again.  He ALMOST made it to a year without any problems!!! June 15 will be 1 year post kasai!!!! My how I remember that AWFUL AWFUl day like it was yesterday!!! I am just so happy that I have him here with us and that he is doing as well as he is.  Oh yes and to top it off Coltyn learned how to CRAWL!!!!!!! It only took 13 months but he is officially a crawler!!!!! So proud of my sweet miracel baby boy!!!!!!!!!! Will update with any news when there is some to report. Thanks for the prayers and thoughts!!!

LABS LABS LABS

Well Coltyns cholangitis doesnt seem to be going away with the oral antibiotics.  His labs keep going up each week we have them checked. We are to have labs doen for the next 6 weeks once a week.  So when we left the hospital some were trending down while others were going up but this week everything went up. BUMMER!!!! We are still waiting on the doc to call us and let us know what she thinks we need to do.  I just dont understand what is going on but we will see soon.  Here is a little spreadsheet of what labs should be and what his are right now and what they have been the last 3 weeks.

(NORAML range)                  May 21,2012           May 26,2012               June 1,2012
      
ALT (5-50)                                185                             183                            192          
AST (10-60)                              61                               110                            113
ALK Phos (110-320)                 682                             640                            797
GGT (7-32)                                173                             258                            319
Total Bili (0-1.3)                         1.4                              .5                                .2

So this is pretty much how it has been the last 3 weeks.  Not that is makes any sense but all the above deal with the liver function so they should and need to be in the normal range.