Status Update

Just an update on the newest issue...a week or two ago, we noticed that Reilly had these weird lines in her fingernails, close to the cuticle.  Well, Friday, one of her fingernails came off, at the line.  Today, another one started to come off.  She now has these lines in three of her toenails and all fingers except her thumbs and one pinkie.  Yesterday, I took her to the pediatrician, who was not certain as to what the cause could be.  After consulting with her GI doctor, it is most likely a biotin deficiency as a result of her liver condition.  This can apparently cause your issues with nails and hair, among other things.  SO, she will start on a biotin supplement. 

On a lighter note...we are going to do a Painting with a Twist Benefit at the shop in Gretna on Nov. 30.  Please come join us and don't forget to pre-register online.

One more thing...we have a benefit party planned for January 14, 2012 at 7:00 p.m. at the Old Fireman's Hall in Westwego.  Save the Date!!!  More information to follow...
 

Today's Scope

No bands today!  Reilly's esophagus looks AMAZING.  It seems to be regenerating, some of her scars from the first bands have healed.  There are a few spots that will be watched, but a great report.  There are still significant varices in the fundus (where the esophagus meets the stomach) and in the stomach lining.  She has three internal hemorrhoids now which have to be monitored and hopefully treated without invasive measures.

We are home now, and she has treated herself to watermelon and chocolate milk (interesting combo, I know), but it must be some form of bliss because she is very happy. 

I will update with more information as I know it.  Thanks again, and again, and again for all of the prayers and support. 

We have a Painting with a Twist benefit night scheduled for November 30 at Pw/aT in Gretna, 7:00 p.m.  Please pre-register online.  I will make an event and also forward the link via Facebook this week. 

SURGERY SCHEDULED!!!!!

We heard today from Dr. Superina at Chicago Children's Memorial Hospital and Reilly is scheduled for surgery on January 23, 2012.  We will have to be in Chicago for pre-surgery testing on January 18.  She will have a 5-7 day stay at the hospital (with no problems) and hopefully be discharged by January 30.  She will then have follow-up visits on Feb 3 and Feb 17.  SO, we will have to stay in Chicago until those appointments are completed.  Her additional follow-up care will be here at Children's in New Orleans with Dr. Noel. 

This is very exciting and very terrifying at the same time.  We are now trying to work out logistics and how to manage this whole experience. 

Reilly is holding up well, although we have lately been experiencing apparently every virus that is going around.  She saw the hematologist and we are following up with her in December.  We go back to have testing done with Dr. Begue in two weeks and she will have EGD #10 on Monday.  I will update as soon as possible. 

Thanks so much for all of the prayers and thoughts throughout this time.  Please continue to keep Reilly and our family lifted up, it works!  :D 

Status Update

I apologize in advance for how long it has taken me to post since my last update.  We have experienced an interesting September, to say the least.  Reilly produced a very black stool and we spent 3 days at Children's to determine the cause.  She was scoped again - which produced interesting results...her esophagus was absolutely beautiful (YAY!!!!) and the doctor believes that she bled in her lower small intestine (where the scope does not go), but the bleed clotted off by itself.  So, needless to say, a rather curious experience indeed.  She now examines her business and informs everyone that it is brown!  YAY!!!  The week before this episode, she ran a fever of 103 and I had to bring her to the ER to rule out infection.  It is believed that she had some kind of virus, with no other symptoms. 

Last week, after getting her 4 yr immunizations, she immediately ran fever and was averaging 102.5 or so, and the fever would not go below 100.8, for 7 days, with no other symptoms (3 dr visits in those 7 days).  We were referred to an infectious disease doctor, who has indicated, along with her pediatrician and her GI doctor, that we need to see a hematologist for the issues with her spleen and because she may be anemic.  It is their opinion that she had a reaction to the immunizations, because of her spleen being enlarged.  That being said, we add someone else to our list!

There is some concern that she is "leaking" blood, as her h+h was lower (low for her normal) and blood in your digestive system can apparently cause an unexplained fever.  We are trying to make it to her next clinic appointment on Oct. 11 without incident and she will have more bloodwork then.

We have been in contact with a surgeon and team in Chicago that specializes in treatment for EHPVT / portal hypertension in children, and hopefully we will have an appointment for an evaluation soon.

This is where we are now.  Please, please continue to pray for healing and also for strength and understanding, maybe a little patience too!  Thanks again for lifting us up!

8th Scope / Banding and Update

Reilly had another scope and banding on August 10, where Dr. Noel banded 4 spots in her esophagus.  Things have been a bit hectic and crazy around here: we moved to a new house, Reilly turned 4, and school and soccer is starting.  As you can imagine, time is hard to come by, so I apologize for the delay in updating.

Reilly is doing pretty well.  Outwardly, she seems fine, looks good, is VERY proud to be 4.  Inside, her spleen is enlarged, she has some issues with some of her bile ducts and her pancreas, the gastric varices are extensive and growing, and she has some internal hemmorhoids that have formed.   We go for a clinic visit tomorrow, where we will talk with Dr. Noel and also have follow-up bloodwork.  Hopefully, it won't take me weeks to update! 

We are in the process of scheduling appointments with a couple of surgeons to discuss how to proceed and once we have good information, I will post that as well.

Thank you so much for your continued support and prayers.  Please keep it up!

MRA and Clinic Visit

Last week, on June 29, Reilly had an MRA (venogram) done at Tulane.  We are waiting for the results of that test and I will post as soon as I know what Dr. Noel says about them.  Yesterday, Reilly went for a clinic visit.  Dr. Noel is confident that we can wait 4 more weeks before doing another scope and possible banding!  This is dependent upon her blood test results, which should be in today.  She seems very stable and as long as she stays that way, we will try to wait as long as reasonably possible in between procedures.  There is no way of knowing, except through blood tests and through scopes, exactly how quickly the varices are forming in her esophagus.  I will post as soon as I know more information about the MRA and her blood work. 

Please continue to lift Reilly and our family up in your prayers. 

7th Scope / Banding

At her last clinic visit, Reilly's blood ammonia levels had significantly decreased.  Needless to say, we were very excited about that.  Then, our family participated in the Children's Hospital Telethon, which raised over $1.7 million for Children's Hospital New Orleans!  It was definitely a neat experience and we hope to be a part of it again. 

Today, Reilly had another scope and had two bands placed.  She did have an active bleed (a very slow one, but definitely fresh blood) this time.  She is spending tonight at Children's and we will go home in the morning if things progress as usual.  She is sleeping hard right now, and snuggling her stuffed monkey, but appears to be doing just fine. 

Thank you all for keeping us in your thoughts and prayers.  I will update as things happen, and they seem to be slowing down a bit (thankfully), but we still have an interesting road ahead.  She will have a MRV (venogram) within the next couple of weeks, and bloodwork and clinic visits and all that good stuff.  SO, that's it for now!