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!!!!!!!!!!!!!

Ears Ears Ears...nothing but trouble!!!!

Well here we are with our 5th ear infection sine February 16!!!  I feel terrible for the little guy!! He has been through so much already why cant he catch a break? We have an appointment with an ENT on April 27, which cant get here soon enough!!! He has been on 5 different antibiotics and they work to clear the infection but it come back within a week of being off them.  I am starting to wonder if this has something to do with him not being on the bactrim?  None of this started until he came off the bactrim, so i was wondering if that had something to do with it? I will be asking the ENT what his thoughts are on teh 27th.  I am so hoping that we see him the the 27th then they say yes lets schedule the surgery and it can be done the followng week so my litlte man can get some relief.  He hasnt had a break his whole first year of life it seems.  Although the kasai is working beautifully right now so I guess that is a break he got.  So we will see what they say on the 27th then go from there.  He is also tongue tied so they will be clipping his tongue at some point.  I am hoping that they can do that when and if they do the tubes.  As of yesterday he has only gained 7 ounces since February 2 so not to much and has dropped to the .5 for his weight?! Not sure why he cant seem to gain but we will be hoping the tubes will be the fix and he will start to chunk up and sprout up!!!   I talked to the ped yesterday about it and she said that she is hoping that he will fatten up and sprout once the tubes are in place.  She siad he is still gaining and growing just evry very slowly so we will see what he does int eh up coming appontments and then go from tehre.  We see GI June 19 so I am going to try to do everything in my power to get him to gain gain gain and grow grow grow!! LOL I am sad to say that he will be a year old in less then 2 weeks :( I cant believe that he will be a year old?! Where had the time gone?! It sure has flown by!!! O-well I guess that is life!! LOL I will update later once we know what is going on with his ears in the upcoming week.

9 Month Liver Check-up

WOW what a 9 months it has been.  We went to the St. Louis Childrens Hospital on Tuesday, March 20, 2012 for some follow up appointments.  prior to my appointments with the specialist we had to have a blood draw and an ultrasound completed.  So we got there about 8:15 am and had the blood drawn then went downstairs to have the ultrasound done.  Man did Coltyn NOT like the ultrasound or blood draw for that matter!!! O-well we got it all done then we went up to the 10th floor to see if there were any nurses that had taken care of him there and we did get to see them.  They said they couldnt believe how healthy he lookd and how big he has gotten.  I was very happy that we got to see them.  Then we decided to go out to the rooftop garden to kill a little more time.  Coltyn LOVED that place when he was in the hospital.  He liked anything but the room.  So when we could get out we did.  Anyways then came the time for his appointments.......... I was so nervous that we were going to get bad news, but Dr. Turmelle was the first one to come in and see him and she said that he looks GREAT and that he was her model patient, she wished all her BA kiddos looked like this.  SHe said by looking at his labs and ultrasound you wouldnt know he had BA.  The kasai is working wonders for him at the moment.  She also said we will take it when we can get it.  I was relieved to hear this but also I know that it can change in no time.  I am hoping that things stay like this but also I realize they more then likely wont.  Then Dr. Dillion came in and said how well he looked.  The only thing that they are a little concerned about is his weight gain, he went from the 5% down to the 1% for this.  Dr. T did say we will see what happens in June when we come back and then go from there.  She said we really couldnt use the last 3 months as a guide cause Coltyn has been sick with 3 ear infections since the end of January.  So we are talking tubes here very very soon I think.  So all in all we had a GREAT check up and I am so happy for that!!! THANK YOU GOD!!!!

I am having a little trouble here lately grasping why GOD has chosen Coltyn to do so well with the kasai and not all the other babies out tehre that are struggling to make it.  I just sit and think then I cry a little cause I just wonder why he chose Coltyn?! I am blessed dont get me wrong but why is he doing so well?! That is the question I often ask myself.  I just feel awful when I see all the posts out there about the kiddos that are being transplanted and think why are we so lucky?! I dont even want to post on the LIVEr group how well Coltyn is doing casue I feel awful!!! O-well I guess this is soemthing that I will have to overcome and learn to deal with.  We go back June 19, 2012  to repeat all the testing to see how he is doing then!!!! Until then we are just going to enjoy the summer and the beautiful weather!!!!

9 Months Post Kasai

WOW it has been 9 months since kasai to the day!!! I cant believe that is has been that long already!!! I remember that day as if it was yesterday. AWFUL AWFUL!!! I was a nervous reck and didnt eat all day long cause I thought if he cant eat neither can I.  All i wanted to do was sit and cry but I had my wonderful husband and family there to support me and help me through it.  I was so scared that we were going to lose him and that he was to little to be going through this, but the nurses and doctors knew how to put my mind at ease, well a ltitle. I was still so scared for my little guy.  I just cried when I saw him after surgery cause there was nothing that I could do for him.  The nurse in PICU told me that I needed to take a break and that he was going to be fine but I wouldnt.  Thankfully my mom stayed that night with us so she came in teh room with him so i could go rest a little.  I felt so sick that night cause I didnt eat and had myself so nervous and scared all day long.  I felt awfu leavingmy daughter that had just turned 2 before Coltyn was born and NEVER stayed a night away from until Coltyn was born then to throw this on top of it was just horrible, but we made it and Coltyn is doing amazing.  I am soooooo happy that he is doing so well. I thank god EVERY day for giving him to me and giving me the strength to get through this.  It has truely made our family stronger and appreciate things way more then we did.  We go back to see the surgeon and the GI docs on Tuesday, March 20, 2012.  I am sooo nervous that they are going to say that something is wrong just because thinsg have gone so smooth.  I will update after the appointments: Gi, Surgeon, Ultrasound, and Bloodwork. 
 

Sick LIttle Guy

WEll it has been a rough week for this little guy.  He ran fever over the weekend and just couldnt get comfortable enough to sleep.  So I took him in to the ped on Monday and she siad that everything was fine and that is could just be the seperation thing and him waking is his way of making sure I am still there. So we didnt do anything.  The ped did agree with me that Coltyns liver was abotu 1 cm larger then it had been on feb 2, but she said she was not to worred about it because he was not at all jaundice or tender when pushing on it. Then Tuesday night he started with a croupie cough so we decided to ride it out a little since his sister had the same thing.  Well wednesday came around and coltyn and his sister were not feeling well at all and not eating much so i called the ped again and made appointments for Thursday for them both.  When i got to the sitters to pick them up she was holding Coltyn and said he is not happy this morning and wont let me put him down.  He screamed the whole way to the ped then screamed the whole time in the waiting room then continued to scream once we got back in a room.  I had no idea what to do for him cause I didnt know what was going on.  The ped came in and was asking what his symptoms were and said it sounds like he has croup for sure and then looked in his ears and said this is the problem it is infected and then looked in the other ear and it was also infected.  She went out to get teh nurse cause she said we have to give him something for the pain, so they gave him some Tylenol.... Poor baby.  then she looked Kendyl over and well she has had a cough for about 1.5 months that has developed into croup which is not uncommon for her.  She gets croup all the time.  They did tell us kiddos usually grow out of it, so that is what we are hoping for with her.  Anyways they looked in her sinuses and said well this is her problem she is all swollen and full of congestion. So now they are both on amoxcillian and I am hoping they are better before Sunday as it is Kendyls 3rd b-day and we have her party!!!

So other then Coltyn being sick we are doign well.  I am still worred about Coltyn since he will be 10 months in 2 weeks and still not crawling.  He is at least now getting up on all 4's and trying a little, but not very often.  I have asked about it and the ped said they all develop at their own level and he will do it eventually.  I am going to check with his GI team and see that they say when we go back in a month.  We will have teh ultrasound, labs, and see the GI team and the Surgeon team.  I am hoping that they tell me that things look GREAT still and that they dont need to see us for another 3 months like this past time. So we are just taking it a day at a time and enjoying every minute of him and his sister.  I am so ready for the warmer weather to be able to take the kids out and play!!!! We have a zoo goers pass this year so i am so excited to take them to the zoo and do all the extra things and not have to pay!! It was a GREAT Christmas present!!!! We are also trying to plan a trip to Florida for a week in September after everyone goes back to school.  That is all for now.