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!!!

1 Year Well Check

So yesterday Coltyn had his 1 year well check.  Coltyn only grew 1/4 of an inch in 3 months time!!! He is now 28 3/4 inches tall and well his weight wasnt that great either, he was 17.5 at his last check and is now 17.15 so he only gained 10 ounces in 3 months!!!! The ped is not to concerned since he is still gorwing and staying on his normal curve, but we will have to see what GI thinks in June.  I am hoping that the tubes will be our magic fix and that will make him gain weight and he will start gorwing.  My fear is that once GI sees he isnt growing much anymroe we may have issues, but only time will tell.  The liver is the main concern with all of this as it absorbs everything that your body needs and if his isnt doing that then we may have a problem?! Other then this the appointment went well.  He is slowly doing the milestones!! LOL He does them on his own time and at his own pace!! HE just started to army crawl about 1 month ago and then the last week he just figured out how to go to sitting from laying on teh floor without help.  He still isnt pulling up to much but he will cruise a little around things when we stand him at an object and he will walk holding our fingers but not behind a toy!! LOL He will get there eventually one day!! I have calmed down about what he SHOULD be doing at his age and just keep telling myself he will do it just give him time and he will figure it out.  He has been through alot in his 12 months of life.  So we are stiing back and letting him go at his own pace and I am not going to worry anymore about it. So all in all he is doing GREAT and there are no concerns other then i am concerned about the weight and height issue, but only time will tell us what we need to be doing.  Thanks for the prayers and support!!!

Coltyn is "1"

I have put some pics of both kiddos just cause!!! Hope you all enjoy!!! Ok well Coltyn has officially turned "1"!!! I cant belive he is already 1!!!! IT just seems like yesterday that we brought him home.  It sure has been a challenageing year with him, but he is doing so well now.  As his Liver Doc says "We will take it when and for how long we can get it"!! I am so tahnkful that he has had teh success that he has from the kasai.  I never thought we would be this far out and be doing so well,.  He has NO problems from the kasai as of right now.  We are still watching his weight gain issues, but we are just taking a backseat and seeing what he is going to do.  He is in teh .6 for his weight now, but that is alright we will get there.  He had his ear tubes placed on his birthday unfortualtely!!! We said it would be ok as we had his party the day before and we wanted to get it done as soon as we could so we could get off the meds.  He had a rough day and night yesterday, but the sitter said he is doing better.  I think he is overtired and that he was tired from the anesthetic and didnt want to give in. I aqm hoping these take care of his ear infections!!! If they dont I think I am going to SCREAM!!!! We go on Thursday for his1 year well check so I will post his stats then.  I am hoping he is 18 pounds!!!! HE cant get to that point it seems.  He has ben at 17.3 for months now!! LOL HE has learned to army crawl and get to the places he wants that way and he is starting to get very very brave and stand without holding your hand.  He has also just learned how to sit up from the lying down position all by huimself.  I know he is behind, but I am just excited he is getting there FINALLY!!! He is a very vry content baby so I think that is why he is not doing some of teh things he should be.  HE will sit and just wantch everything and take it all in.  I would like to say thanks to everyone for their prayers and support though this.  I am counting my blessings on how well he really is doing!!!! Thanks everyone!!!!!!!!!!!!!