Update

I just wanted to let you know how things have been going for Coltyn.  Each month this summer he seesms to get sick with something.  May he had cholangitis, June he had hand foot and mouth, July he had something that was making him vomit for a few weeks on and off, then August he had a nast nsaty virus for a week that caused him to not eat and be very very fussy.  HE never got really congested just a high fever for 3 days and uncomfortable. I took him to the ped and she said that she thought it was a virus and to wait and see what he did by mid week.  So we did just that and his fever finally broke but then he was up all night screaming and screamed the next morning so I took him back and she said she felt it was still just a virus but would feel more comfotable if we took him to Childrens and have him looked at and make sure we arent over looking something.  So I called and spoke to his liver doc and she said bring him down and that we were going to be admitted.  So we went down and had labs done and IV fluids which seemed to help him alot.  WHile we were waiting on the labs the liver doc came down and looked at him and siad that she was comfortable if he quit his screaming stuff and if labs were stable for him she was willing to let us go home.  SO Coltyn did cooperate and his labs came back alright and he quit screaming and started acting more like himself.  His labs did show that he was a little dehydrated so tha extra fluids did help him out.  HE wasnt to happy that they placed the IV in his hand.  LOL Every other time he has had an IV was placed in his feet, but this time they decided to do his hand as he is walking now and they dont like to place them there when walking unless that is the only place they can get.  HE was trying to take the dressing off by pulling at it and then he tried to bit it off and then he tried hitting things with it to see if that would work.  It was pretty commical to watch, but he really wasnt to mad about it just tyring to see what he could do I guess.  While he was sick here in August he lost everything that we have worked so hard for him to gain!! HE lost 10 ounces in a weeks time.  He was 19.10 pounds and 30 incehs tall on August 3, but was down to 19 even on August 17. HE seems to have made a turn and has been doing much better the last week or so. He was eating GREAT but for some reason he has decided that he isnt to much of eating again.  I am keeping my fingers and toes crossed that Coltyn cooperates and keeps up the good work so we are able to go on our vacation this year on the 15 of September. We are planning on heading to Pensacola Florida for a week!!! We are all very much looking forward to this.  I am in need of a few days off and time with my kiddos and hubby and my parents!!! We will be driving so I am hoping the kids do well in teh car.  When we get back Coltyn has an appointment with the surgeon and liver doc to see how he is doing and MAYBE taking him off the antibiotic again? I am a litlte nervous if we do as he has had such a rough sumemr I am not sure how winter is going to go for him?! o-well we just take it a day at a time and then go from there.  I will post antoher update when we have one.  Until then I hope everyone has a wonderful and safe Labor day weekend!!!!

Coltyn....well being Coltyn!!!!

Sfar things have gotten better since Coltyn had the cholangitis.  His labs were looking better at his liver check-up in June and he was acting more like himself.  The first week of July Coltyn threw up 3 times that week, but Steven and I THOUGHT we had a reason for all 3 times??? LOL The first time was on Tuesday the 3rd and we were eating at Applebee's in Washington and we gave him broccoli, which he has never had, and he threw up after eating some of that so we thought it was just that he didnt like teh broccoli.  Then on the 4th he got sick again before bed, but he was throwing such a fit about going to bed we thought it was the fact that he had himself so worked up so e didnt think twice about it.  Well then on Thursday morning the 5th he did it after we gave him his medicine, but we thougfht it was just from the medicine. So that was it for that week he was good to go until the next Thursday July 12.  On the way to the sitters he decided to throw up all over the car. So then I called the ped and she said she would like for me to call the liver doc and get labs done and then if those were ok we could all relxa a little.  So we had labs done and they were good and didnt show any signs of dehydration at all.  But on firday morning he threw up once again right after we gave him his morning meds.  The liver doc said since his numbers were ok she wanted to see what he did over the weekend and then take it from there.  If he continued to get sick then they would do an upper GI to check for obstruction.  This can happen from scar tissue from teh kasai.  Other then this he has been pretty good, besides not sleeping!! LOL but I will take that over everything else.  So as far as this week goes he hasnt gotten sick and he seems to be doing good. Hoping it stays quiet!!!!

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.

1st episode of Cholangitits

Well Coltyn has been doing so well with his Kasai until Friday May 11, 2012.  We were at my nephews preschool graduation when I though Coltyn felt warm and he was very crabby and wouldnt eat that eveing when we got home.  He had an alright night and slept ok as well.  Saturday May, 12, 2012 I had my first 5K run and dad had to take Coltyn and Kendyl to soccer so I could run.  When I got home and the kids got home my husband said he had to give Coltyn Tylenol as he felt warm like he had a fever when they were at soccer, so I said oh well that is alright we will see how he does throughout the day then go from there.  Well he wasnt himself at all and when he got up from his afternoon nap he had fever once again so I decded to take him to Urgent Care and see what was going on.  Well we waited forever there and the doctor said that he had a double ear infection and that we needed to contact our ENT on Monday May 14, 2012 to see why his tubes were not draining and placed him on Augmentin for the infection.  He had tubes put in April 30, 2012.  So on Sunday Mothers Day he felt a little better but still want himself.  We just thought it was the medicine making him not want to eat and be fussy.  So Monday May 14 came around and I called the ENT first thing that morning and then finally about noon time I got a call from the nurse and explained what was going on and what the Urgent Care doctor said Saturday and she was rude and kept telling me that cant happen and that doesnt make any sense.  I said I have no idea what she saw to say he had an ear infection but that is what she said and I was tol to call you on Monday like I am doing.  She said well we can see you Wednesday May 16 to check him out but to keep him on the Augmentin until then.  So we did just that but I was aggervated about how she treated me so I called Coltyns primary care and made an appointmnet with her to get her opinion.  She looked in his ears and said that there was no way that he had a double ear infection on Saturday as his ears are crystal clear with NO fluid in there at all.  I said well that is why I came to see you.  Do you think there is something else wrong then? She looked everywhere and looked closely at his hands, feet and mouth as there has been alot of that going around and she there was nothing that looked like he had that.  So then she proceeded to check his liver and said that that felt about 1cm larger then she remembered it being.  So shwe decied to call Coltyns liver doctor to see what she thought.  They decided to take him off the Augmetin since he had no ear infection and see what he does from there as he has been doing so well with his kasai.  So we did just that.  We were told if he gets fever back to call GI and let them know then go from there.  So on Wednesday May 16, 2012 I received a call from the babysitter that Coltyn had a fever of 101 at 11:00 am.  I went and picked him up and took him home and checked his temp myself and it was 101.8 so I called down to GI and they called me back with the instructions to take him to teh ER and that we would be admitted for at least 48 hours for antibiotics for Coltyn.  So when we got to teh hospital Coltysn temp was 103.8 and all he did was lay on me and wanted to be left alone.  They did lab work and an ultrasound and started the IV antibiotics while we were in teh ER.  Coltyns fever broke while in teh ER and he was so much more like himself.  HE still didnt want to eat much but that we knew he didnt feel good.  When we got labs back all his liver numbers were up.  They did severl tests to see if he just ha da virus or what was going on.  We knew we were there for at least 48 hours but then the GI doc came in to see us Thursday morning and said that we would be there until at least Monday May 21, 2012.  I was not happy as I just though it was a quick stay and he would be back to good health.  Well I am glad we stayed as each day his liver numbers and bili went up.  He was looking more yellow to us and the nurses so I was gald he was still tehre and on the IV meds.  On Monday May 21, 2012 we did get to go home as his total bili had dropped from the days prior but all other labs are still going up.  He is on a strong oral antibiotic and we have instructions that if his fever returns to bring him back to the ER and he will need to be admitted again for IV meds.  So we are hoping and praying that this doesnt happen and that his labs start to improve soon as we have them drawn every Monday for teh next 6 weeks.  Thsi about sums up his first bout with Cholangitis.  Wea re so very lucky that he has made it this long without any problems and hope this is the last and he gets back to the NORMAL labs and no issues very soon!!!