Texas Chilidren's Visit

Happy Memorial Day!  A special thanks to all of our service men and women for their sacrifices.  Where would we be without them?

Last Wednesday, we saw Dr. Karpen at Texas Childrens Hospital Liver Center.  This visit was very informative.  He does not recommend surgery for Reilly until she is at least 5, because she is so young.  She also needs to be a bit bigger, allowing her veins time to grow and to see what her body is going to do on its own to try to correct the problem.  The banding should continue for as long as it seems to be controlling the varices.  If Reilly bleeds again, we have a completely different ballgame.  He recommends that we let her be a kid, while she can.  Dr. Karpen is testing for an underlying condition that may be why the umbilical catheter caused the clot - biliary issues, protein issues and clotting issues - because it is so rare, with modern medical technology, that the catheter would be the only culprit.  It will be a couple of weeks before we get the results of these tests.  We also need to schedule a MRV (venogram) and have the films forwarded to Tx Children's for his review.  He still has to review the CT scans because there was a problem with the CD received from CHNOLA.  We still have to discuss his recommendations with Dr. Noel (whom he spoke VERY highly of) and determine the best plan for Reilly taking into consideration Dr. Karpen's suggestions and opinions.

We have been invited to participate in the Children's Hospital New Orleans Telethon on June 11 and 12!  I will update with more information some time next week.  Reilly is presently scheduled for more blood work and a clinic visit sometime next week and another EGD/Banding procedure on June 15. 

I cannot say THANK YOU enough for keeping Reilly and my family in your thoughts and prayers.  Please continue as we have a long road ahead.   We are so very fortunate to find ourselves surrounded with such great and understanding friends and family - we really do not know where we would be without you. 

6th Procedure

We Are Home!!!  Yay!  Reilly had only one very small varix (I think) in her lower esophagus, which was too small to band.  There are signs of some that will be enlarging and those will need to be banded at her next procedure in 4 weeks.  We are all excited that we did not have to spend the night in hospital, we were almost giddy on the way home! 

She will go to the clinic in about 3 weeks and have extensive blood work (liver panel, ammonia levels, CBC, etc) at that time.  She has to remain on the new medication for a while longer before they can get a realistic look at whether it is helping to control the ammonia levels. 

Reilly's appointment at Texas Children's Hospital is next week, so we are getting ready.  Thanks to everyone for the thoughts and prayers.

Tomorrow's Procedure

Reilly will have her 6th procedure tomorrow.  Hopefully, we will get to come home tomorrow afternoon - as long as there is nothing to be banded, so keep your fingers crossed.  The only way to know if any varices have formed (or re-formed) is to go in and have a look.  I will post as soon as possible.  Please keep her in your prayers. 

Freaky Friday the 13th

Yesterday started out great - in celebration of my graduation from Tulane on Thursday, Reilly and I met my parents for breakfast.  My mom noticed that Reilly was still very pale, but it had a yellow tint.  I got to Ms. Susan's and we were celebrating a win on an appeal (in a court case) and she noticed Reilly's skin looked a little yellow.  Considering that Thursday was a very long day and she was "so 'cited" about my graduation, it stands to reason that she was very tired.  I decided to call the doctor and let them know what was going on.  Dr. Noel wanted to have her blood drawn to check her levels, so after we picked Cole up from school, Reilly and I headed to Children's.  She was not jaundiced (her eyes would be yellow), which is very good.  Most of the tests results were within normal ranges (her h+h was lower than Tuesday's, but still within normal limits), however her ammonia levels were well over normal.  This is probably due in large part to the fact that the liver is not processing all of the toxins out of her blood because the blood is not reaching or going through her liver to be processed because of the blockage not allowing normal blood flow.  Her sugar levels were low, but within normal.  All of her liver enzymes and other tests were within normal range - which is indicative that her liver is functioning properly, it just isn't receiving everything to process.  Reilly will take another medicine that will help her body process the ammonia and balance her sugar levels.   The doctor indicated that she does not have a blood sugar issue, her body just doesn't have a lot of reserves like it should; so if she depletes her reserves, it takes her little body much longer to build them back up.

So, yesterday was definitely a mixed bag.  There were a lot of things to be excited and happy about - graduation, winning the appeal, not having to be admitted to the hospital.  Adding more medication and more things to watch and consider is not that exciting. 

Now we go from here.  Her ammonia levels will now be monitored more closely.  We will have more information on Wednesday when we go back to Children's for her procedure.  

Please continue to keep Reilly and our family in your thoughts and prayers.  As I write this, I am exhausted, even after a decent night's sleep.  She remains in fabulous spirits and good humor, trying to beat her Daddy and brother at Sorry - which is amusing because she keeps putting her Barbie and her feet on the board, messing them up!   

Bloodwork Professional...

Reilly was such a BIG girl getting her blood work today!  She informed the lady in admitting who her parents were and what she was there for.  Then she told me that she was the leader to the "bloodwork room" (lab), knew exactly where to go, and the only time she even whimpered was right when the needle stuck!  SUCH A PROFESSIONAL.  At this point, she could probably do it herself.  I'm so proud of her and how much of a trooper she is.  This little girl has handled this difficult situation with a definite style and grace all her own and keeps us laughing in the mean time.  Thank God for small blessings. 

Next week she has another procedure and the week after that we go to Houston! 

Busy Busy Weekend This Past Weekend

Well, we made it through the weekend!  The pool tournament was a HUGE success!  Thank you so much to everyone who donated prizes, food, time, effort, and thank you to everyone who participated!  It was a very long day, but so much fun!  Thanks to Amanda L for all of her hard work!

The Bake Sale at OLPS went VERY well too!  Thank you Lindsay and Ms. Bonnie for setting it up, and thank you to everyone who made goodies that were sold! 

Today is a very exciting day - I turned in my final project and I am getting ready for graduation next Thursday!  Yay!  It's been a long time coming, I know, but it was so nice to have happy children smiling at me and cheering for me when I got home tonight!  They really know how to make me smile!

I will post more later, but for now, I am going to bask in the relief that I am FINALLY finished with school!