POLKA DOTS & PIGTAILS BENEFIT

Tickets are available for purchase from myself, Kim Duvalle and Amanda LaBruzza.  You may purchase tickets online through this link

http://finfoundation.org/2011/12/polkadots-pigtails-benefit-for-reilly-bladsacker/

Exit 32 and Under Review will be the entertainment and there will be a Silent Auction, 50/50 raffle and a Parade of Prizes raffle.  Free food, cash bar.  Please join us!

Prizes include:  Les Miles signed LSU football, Saints jersey, restaurant gift cards, massages, Saints signed football, Zephyrs Suite tickets, fleur de lis items, saints goodies, unique art, etc.

Merry Christmas and Happy New Year!

I hope that this finds everyone recovering from Christmas festivities and getting ready to ring in the New Year!  Santa came to our house and delivered to the kids' satisfaction, so that was definitely a relief!  And, HOW BOUT THE SAINTS?!?!?!  What a great night for the Saints, Drew Brees, and the City of New Orleans.  

At this time, Reilly is doing fairly well.  She has had a few setbacks, fluid on her ear (that the tube JUST came out of) and head congestion, but nothing that was too dramatic.  Reilly will have another scope on January 9, so I am hoping for a really great day, all the way around!  

We are gearing up for the benefit to be held on January 14, 2012 at 7 p.m., at the Westwego Civic Center.  A lot of work has gone into this event and we hope that everyone can join us.  Tickets will be available for purchase online and I will post a link as soon as it is ready.  There will be a Silent Auction and a Parade of Prizes raffle.  We have a Les Miles signed LSU football prize so hopefully our Tigers do it again and BEAT BAMA!  I will update soon with more details about the prizes for the benefit.  Check out the facebook page and LIKE IT, please, because prize details will be posted there as well!

Reilly is scheduled for surgery in Chicago on January 23.  Still waiting on a few issues with the insurance to be ironed out (confirmations / authorizations in the proper places, etc.) and we will be set.  We have made some arrangements, but are waiting for these few things to fall into place before completely finalizing our plans. 

Please continue to pray.  We've come a long way from her diagnosis, but we still have a very long way to go.  Let's hope that 2012 is a year of health and healing! 

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! 

Clinic Visit and Bloodwork

Yesterday Reilly had a clinic visit and bloodwork.  The clinic visit went fairly well, or as to be expected.  No really significant change, her liver is not quite as enlarged (YAY!), but still enlarged; and her spleen is now somewhat enlarged (BOO!), but that is apparently a normal thing.  Dr. Noel will monitor the spleen very closely because serious problems can develop from hyperspleenism (I think that is how you spell it).  Her medications will remain the same for now.  I am working on scheduling the venogram (which will be performed at Tulane) and Reilly is scheduled for her 7th Scope and Banding next Wednesday.

Don't forget, our family will be interviewed during the Children's Hospital Telethon on Saturday, June 11 at 6:15 p.m. on Channel 6 / WDSU. 

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! 

THANK YOU SO MUCH

My friend, Amanda, set up the Painting with a Twist benefit that was held this past Wednesday... and it was a HUGE success!  By all accounts, everyone had a fabulous time and the event was packed.  The paintings I have seen look fantastic.  Thank you to everyone who participated.

The Spaghetti Dinner at New Orleans Ladies Ballroom was beyond measure!  The Terrytown Lions Club was kind enough to provide help at the door and with the prizes, and thanks for their generous donation.  Over 200 plates were served!  Our deepest appreciation to Ms. Jan and the employees of the Ballroom for donating the food and their time and putting the event together.  To our family that donated food, time (cooking and serving), and love and support, we really do not know how to adequately say Thank You!  Reilly had a good time, and she ate 3 plates of B-Sketties!  She was apparently hungry!

The out pouring of kindness and support from our friends and family and their friends and their family and the community has been overwhelming.  There are so many to thank and not enough words to put it all into perspective.  God is good.  Without Him, I do not believe we would be able to find our way through this. 

Please continue to keep our family in your thoughts and in your prayers.  We have a long road left to travel.  With God's grace, love and support from our family and friends, and laughter wherever we can find it, we will make it through with our heads up.  Thank you, again, with all of our hearts!

5th Scope / Banding

Finally home from the latest banding.  Dr. Noel banded three spots this time, all in the lower esophagus near the esophageal sphincter (by the stomach).  Reilly's upper esophagus had no new formations (which is AWESOME) and we have to go back for another procedure the week before we go to Houston.  Reilly does have gastric varices forming more quickly now, which is expected and should be resolved by the bypass/shunt procedure. She can start having a little juice in about 10 days, which she heard the doctor say and is very excited about.  We had to push the start time for her procedure back about an hour and half because the little stinker snuck raisins yesterday morning and we did not want any complications with the anesthesia.  I guess she'll be Raisin girl from now on. 

Reilly was passing out hugs and kisses to her nurse before we left, which made Ms. Casey very happy!

Happy Easter!!!

Since Cole didn't have school yesterday, he, Reilly and I went to City Park to play and check out the ducks.  What fun we had.  We only stayed about an hour because Reilly got very tired, which was expected, and she napped for about an hour after.  Today, on our list of things to do, is dye Easter eggs and get ready for the Easter bunny tonight.  Reilly has informed us that today is Easter Bunny Day and tomorrow is Easter, so we have to do something special, apparently.  She also told Cole that if he doesn't let her sit with him, she is going to call the police on her Minnie Mouse cell phone - I would love to hear that phone call!  Needless to say, it has been a very relaxed, VERY amusing day and almost 1/2. 

We have a very busy week ahead of us.  Reilly has another procedure on Tuesday, which we are hoping is outpatient, but are expecting to stay the night in PICU.  Wednesday evening is Painting with a Twist, Thursday evening is the Spaghetti Dinner and on Saturday is the Pool Tournament and OLPS is hosting a Bake Sale on Saturday and Sunday.  LOTS of events.  Please, if anyone needs more information, contact me.

I wish everyone a very happy Easter Bunny Day and an even happier Easter.  We certainly have a lot to be thankful for.  Please continue to keep us in your thoughts and prayers - you can never have too many! 

First Clinic Visit

Yesterday, Reilly went for her first clinic visit at Children's.  Dr. Noel indicated that her liver is enlarged, about 1 1/2 times what it should be.  The good news is, her spleen is normal size.  We have to watch for any bleeding and bruising.  Some of the blood vessels in her chest and abdomen are very visible through the skin which is something that must be carefully watched.  We also have to check for signs of anemia (in her eyes, hands, etc) as an indication that she is actively bleeding somewhere. 

Dr. Noel has spoken to Dr. Karpen in Texas several times and they are ready for us in Houston.  Dr. Noel is very confident that we will be comfortable with him and with Dr. Goss (the surgeon), and that they will be able to perform the surgery there.  Now, we just have to wait until May 25 to find out for sure! 

Reilly has her fifth scope/banding next Tuesday. 

Thank you for all of the prayers and support that have been heaped upon my family.  Please continue to lift us up so that we can handle whatever comes our way! 

SMILING A LOT TODAY!!!!

Due to the effort of amazing people associated with the LSBA SOLACE program, the approval for Reilly to receive treatment from Texas Children's Hospital was given around 2:00 p.m.!  I can honestly say that I have smiled more today than probably any day since this journey began, so THANK YOU for the smiles!  :-D
 
We are so very fortunate to have contact with so many people who are willing to help and willing to reach out on our behalf.  It is a beautiful thing to witness firsthand so much good and a very overwhelming experience to have so many gifts bestowed on you and your family all because people want to help.  Simply the grace of God, I suppose. 

Today's Bloodwork

Over the past few days, Reilly has been very tired and relatively inactive, with a few moments of craziness and hyperactivity thrown in the mix.  Barring that, she is happy and funny as usual.  She was such a big girl today when getting her blood drawn, only cried when the tech actually stuck her.  She got about 20 stickers and decided that her legs were a good place to put them, but fussed when she pulled them off because it hurt!  Imagine that.  I think that all the lab techs at Children's remember her, because today, the girl had a pretty bandaid ready for her!  Reilly thought that was pretty great, even though she was prepared with her own bandaids in her pocket!  Yes, we should take stock in bandaids.  The longest part of the experience was walking what seemed like a mile from the truck to the hospital and a mile back.  Exercise, right?!?!?! 

We have the jewelry party this Saturday and then other events after.  Thank you to everyone for keeping us in prayers and lifting my family up during this time.  It is a blessing to know how many people care and want to help in whatever way they can.  Really and truly amazing. 

Update

Reilly is feeling very tired today and has been very attached to me.  She says she doesn't feel well but can't put in to words what is not right.  This scares me in more ways than I can adequately express.  I'm terrified that she is going to bleed again and we won't know and will have to relive some of the experience of last month.  I am hoping that she is simply having a day that is just not so great.  Ms. Susan got her purple glitter nail polish AND painted her finger and toe nails, so she has been showing them off to anyone who will pay attention!

We go back for blood work on Wednesday, and have a clinic appointment next Tuesday. 

This waiting and watching is very stressful and heartbreaking.  She remains on a very restricted diet and on activity restrictions.  It is very hard to tell a child (who appears outwardly very healthy and fine) and reasonably expect her to understand why she can't do things she has always done or eat things she has always eaten.  My promise to her is that when the doctor says she can eat whatever she wants, we will get one of everything and she can have a feast!  That works for now, so I will take what I can get!

Upcoming Events

These are few of the events that our friends and family have arranged, so save the dates!

Silpada Jewelry Party - April 16
Painting with a Twist / Purpose - April 27
Spaghetti Dinner - April 28
Benefit Pool Tournament / Parade of Prizes - April 30
One Smart Cookie Day - May 4
Benefit Day - Haven Massage - May 1 & May 15

More information about these events will be posted VERY soon and flyers should be going out sometime next week.  Thank you for keeping us in your thoughts and prayers and also for helping us. 

Fourth EGD / Banding

We made it home yesterday from the fourth procedure.  Very exhausting night Wednesday after the procedure.  The doctor placed 5 bands and discovered that one of the varices in her stomach is showing signs of ulceration (getting ready to bleed).  The gastric (stomach) varices will not be treated unless and until they rupture.  Banding the gastric varices can cause many more complications than leaving them alone and it is too great a risk.

Reilly vomited twice after the procedure, losing one of the bands in the process.  Losing the band is not necessarily that big of a deal, but the vomiting itself was very unsettling.  So far, this was the roughest procedure yet.  She was very nauseated throughout the night and was placed on medication to help reduce the gagging and coughing.  Any kind of strain placed on her body (through coughing, vomiting, lifting, playing hard, etc) can be a catalyst that causes the varices to rupture as it places too much pressure on/in the veins that have already been weakened.

She will have another procedure in three weeks.  Of course, should anything rupture between now and then, we will have to return to the ER for treatment.  95% of the varices in her esophagus have been treated, however more can appear at any time.  3/4 of her esophagus is looking good, with a few spots that have signs of possible varices forming - which will be treated if/when they appear.  The reason for banding the varices in her esophagus is this - should they rupture, she could aspirate.     

Dr. Noel (GI) has spoken to Dr. Karpen in Houston and now we are waiting for insurance approval.  Dr. Goss (surgeon) and Dr. Karpen (GI / Hepatologist) are going to arrange their schedules to meet with us and examine Reilly on the same date / time to make the appointment more informative and effective.  Dr. Noel had a friend and surgeon visiting from Johns Hopkins while Reilly was in the PICU and wanted his friend to meet his "very special patient with the infectious personality".  How very nice it is to have your treating physician want to show off your daughter to his friends!

I will post again later today, so stay tuned!    

Getting Ready for Procedure

Reilly goes back to Children's Hospital today for her fourth EGD/Banding procedure.  Depending on whether or not any banding has to be done, will determine whether this one is out patient.  If no banding or bleeding, we will be home tonight.  If banding does have to be done, we will stay in PICU like before.  What the doctor sees will also determine how long before the next procedure - 2 weeks or 4 weeks.  SO, I feel like there is a lot riding on this procedure.  Dr. Noel (GI) indicated at her last procedure that he thinks she may be "over the hump", but will have no way of knowing until this procedure.  I cannot tell how much I hope so.  There is no way to measure how quickly the varices are forming except to go in there and look. 

We are still waiting on insurance approval to go to Texas Children's Hospital for a second opinion.  All of Reilly's records have been forwarded, so as soon as the insurance says go, well, that's where we go! 

I will post more information about today's procedure as soon as I can.  Thank you all so much again for your thoughts, prayers, support, friendship, and love. 

WOW! and THANK YOU!!!

I believe that the Chili's Gives Back Night was a huge success.  Thank you to everyone who came and participated, and thank you to those who waited over 2 hours for a table!  It was pretty amazing.  It is a neat thing to witness the kindness of the human spirit at work and see it in abundance over and again.  There really are not enough words to adequately express our gratitude.

Stay tuned for upcoming events, more information should be posted by this weekend.

Again, THANK YOU for keeping our family in your prayers and THANK YOU for helping us. 

Today

Reilly saw her pediatrician today to make sure she doesn't have any infection (because of the congestion and coughing she has going on) before her procedure on Wednesday.  Well, no infection.  It seems to be allergy related, which has triggered the asthma cough.   She will remain on benadryl and was cleared by the pediatrician for her procedure.  Say a prayer that we don't start with wheezing because that creates a problem - inhalers and breathing treatments dialate blood vessels, which would NOT be a good thing.  Reilly remains a very happy-go-lucky little lady, um rockstar, and that makes me smile, a lot!  Small blessings go a long way!

Don't forget - EAT AT CHILIS - Tuesday April 5, 2011! 

Today's Bloodwork

Reilly had bloodwork today and it went rather well.  I think she may be getting accustomed to the lab tech, who is VERY good with hesitant little girls!  More blood was requested this time compared to last time because they are running two additional tests, so we will wait for those results

Right now, Reilly has a runny nose, which may be getting worse.  It is difficult because I can only give her benadryl.  She is on a significant dose of blood pressure medicine and you have to be very careful about what over the counter meds you mix with that.  For now, benadryl it is.  With any luck,  it will be nothing and will go away just as quickly as it showed up - but being my luck, well, you know.

Last night, the kids had their first real experience with hail!  Seriously, it looked and sounded as if an ice machine exploded outside at one point.  We had pretty severe weather and apparently a tornado touched down not very far from our house.  Other than stuff blown around and leaves and limbs and branches everywhere, we are fine.  Other people around us have fence damage and small stuff, but no real structural damage.  Very interesting evening to say the least.

Update

Yesterday was Cole's birthday, so we had a very fun and relaxed day.  We rode the "ferry boat" across the river and munched on Cafe du Monde, then walked with the kiddos through the French Market.  Kim and Calvin got Cole his crawfish (for his birthday) and that made his day complete!  Reilly got cake, and some butter - but that's another story, and that satisfied her.

Today, we are in the process of getting a referral and all the business ready to get a second opinion from Dr. Karpen at Texas Children's Hospital Liver Center.  When I tell you that it is absolutely amazing that anything gets done in a time efficient manner in the medical field, I really mean it.  The hoops that you have to jump through to get the paperwork complete just for the physicians, and that doesn't include getting a doctor approved by your insurance, is INSANE!!!  I am thankful that Dr. Noel's nurse has taken charge and is running around with scissors cutting the tape.  In one single day, she has almost completed everything.  And, she has kept me completely updated on what she has done and what exactly is going on.  What a rockstar!  

Reilly is feeling okay.  Right now she is running a very low temperature and is pretty tired, so she is resting.  She remains in good spirits and if asked, she feels fine.  We are again hoping for a very uneventful week and a half until we go back for another scope and possible banding.  Keep your fingers crossed. 

Chili's Nite April 5, 2011

A friend of mine (Val) was kind enough to set us up with a Chili's nite.  On April 5, Chili's (on the Westbank) is going to donate 10% of sales to Reilly's cause.  You MUST have a flier with your check for it to count towards our total.  I will have the fliers tomorrow and will email and deliver to anyone who wants to participate.  We will have both lunch and dinner service count towards our goal.  This is an opportunity to help, and besides, you gotta eat, right?!?!?!?!?!  Thank you to every one for helping us and for participating. 

A benefit pool tournament will be held at Daquiri Dock (on Manhattan near Lapalco) on April 30 and more information will be posted as I have it.  Thanks again.

Third Scope / Banding Procedure

We are home from the latest procedure!  Reilly had two bands and three injections (schlerotherapy) in her esophagus.  The bander malfunctioned during the procedure and the doctor had to try to go back in, which caused significant swelling in her esophagus and some bleeding and as a result she received the injections instead of more bands.  She is doing well, considering.  She has a little nausea and very low fever, but she is home and very happy to have the IVs out of her arms. 

We have to meet with Tulane again, as they are our consults for the shunt procedure.  Another scope and banding will be performed in two weeks, blood work next week.  We will be traveling to Houston (well, the options are Houston, Miami, and Nebraska) for a second opinion regarding the shunt procedure, however I do not know how quickly this will happen.  Sooner rather than later if I have anything to do about it - but sometimes, things obviously do not go the way I plan them! 

As I know stuff, I will post.  Thanks again for keeping my family in your prayers. 

So Far

Well, tomorrow we go for the third scope / banding procedure.  Hopefully, we have no complications and things proceed as they should.  Right now, we are anticipating spending one night in PICU.  I will keep updating when possible.  Please keep saying prayers, I'm a huge believer that you can NEVER have too many prayers. 

A donation account has been opened in Reilly's name at Regions Bank.  Any Regions bank can accept deposits to this account.  The account may be looked up under Reilly Bladsacker or Amanda or Richard Bladsacker.  To those who have donated so far, THANK YOU, words cannot express our gratitude. 

So far, this has been a very frightening, terrifying experience as a parent.  As a friend and family member and human being, it has been a very humbling and enlightening experience.  I am breath taken by the simple acts of kindness and generosity that have been bestowed on us in the past few weeks.  It is apparently and abundantly clear to me that the Hand of God is at work.  In spite of it all, I do feel truly blessed. 

Tulane Transplant Visit

Today we went to meet with the Tulane Abdominal Transplant Team to discuss the next steps in Reilly's care.  This visit was very unsettling to both me and Rickie.  We met with the surgeon and found that her explanations of the procedures were in direct contradiction to information that we have received from the GI doctors at Children's and other information that we have found through our own research.  The doctor was very nice, but did not even have the correct results of Reilly's most recent scope and banding.  Not very comforting as a parent of a child who has an immediate need for a surgical remedy to a very serious situation.  As they have not ever performed this type of surgery before - especially on a child, Tulane will probably perform some of the pre-operative testing (angiogram), however, that will be the limit of their involvement.  We are going to discuss our options further with the GI doctors at Children's on Wednesday. 

We Survived the Bloodwork!

For those of you that don't know, Reilly is not a fan of getting needles (poked, aka mosquitos) for any reason.  We went to Children's today for her bloodwork, which she survived, without major incident.  When the lab tech took out the tourniquet, Reilly was facing one way and gave her a look that, I am not exaggerating, gave the woman pause.  Reilly then slowly turned her body completely 180 degrees from the way she was sitting, so that her back was to the lady.  When we turned her around, she refused to speak and predictably, started fussing.  Upon feeling the insertion, she screams, " I need a BAINDAID (spelled that way on purpose, because that is how she says it)".  The lab tech says, "I remember you from upstairs!  I got your bandaid baby."  She obviously made an impression!  She was glad to leave the room and promptly requested to leave the hospital as apparently, she was not interested in staying one second longer than required.

We are scheduled to see the Tulane Transplant team on Monday. 

Status Update

Reilly is doing well, though she gets tired very quickly.  This is probably due in large part to the blood pressure medication.  We go tomorrow for blood work, so we hope that her h+h is high and within normal.

She got to see her friends at GUMP (Gretna United Methodist Preschool) for a few minutes today!  Her class made her a beautiful sign and her friends were all so excited to see her.  The poster will probably be hanging on her door forever.

I should hear from the Tulane Transplant Team tomorrow about her appointment.  That appointment should put all things regarding the timeline for surgery into motion.  Her next scope/banding is scheduled for March 23...again, still saying a prayer that we have another uneventful week.

As a side note....completely unrelated ...I got my cap and gown for graduation today!  Reilly came with me and helped order announcements as well.  She thought it was for her!  Very exciting day.

Blood Center Donations

Rickie's Uncle Doc was kind enough to open an account with The Blood Center in Reilly's name.  Her account number is W067111701690 if you or anyone you know is interested in donating blood.


At this time, we do not know if or when she will need more blood.  Until she has the shunt/bypass procedure, she is at significant risk for bleeding again (varices rupturing).  She is on a very restricted, soft diet and on blood pressure medication and medication to reduce acid and reflux in an effort to prevent any further bleeding.

Thanks again for helping out!

From the beginning...

February 28, 2011 - our lives changed forever.  My husband was at home with our son and daughter while I was at school that evening.  Reilly was sleeping in the chair, woke up a little grouchy and asking for Mommy.  Rickie told her Mommy would be home in a little bit and she threw up blood.  A LOT of blood.  We found out later that she lost almost half of her blood volume that night.  Rickie immediately raced to the emergency room.  I called to tell him I was on my way home from school and he instructed me to meet him in the ER.  I got there soon after.  The doctors examined Reilly, started IV fluids and took abdominal and chest x-rays. 

 We tried to make the ambulance ride to Children's Hospital in New Orleans an adventure, but she was so weak that she hardly remembers the event at all.  At Children's, we were admitted to PICU and the doctors immediately started working to stabilize her condition.  Sometime on March 1, after several blood tests, she received two blood transfusions.  An EGD (endoscopy) was needed to determine the source of the GI bleeding.  During the EGD, the doctors found that she had grade 4 esophageal varices.  This condition is normally found in individuals who are in their 60s and who are alcoholics or have liver disease of some sort, not perfectly healthy 3yr old little girls.  The doctor made the decision to band some of the varices (6 of them) and keep her in PICU for further observation and testing.  Now that we knew the source of the bleeding, we had to find out the cause of the varices.  Her liver was normal and functioning properly, her liver enzymes were normal, her tissue fine.  A CT scan and ultrasound showed that she has a blockage/clot in her portal vein.  This will require a shunt/bypass surgery to correct.

The problem is that Reilly is so small and her esophagus must be better before the tests (MRA) and surgery can be performed.  The physicians would prefer her to be bigger, to reduce the risk of complications, before the surgery.  Also, doctors who perform the type of surgery required, on children, are located in Chicago.

On March 9, Reilly had another EGD and 5 more esophageal varices were banded.  The varices in her stomach (gastric varices) were much more pronounced and apparently forming quickly.  The doctors decided to allow us to go home on March 10, with instructions to return immediately upon any dark stool, trouble breathing, throwing up, heart palpitations, increased fatigue, etc.  We also have to blood work on Wednesday and third EGD / banding is scheduled for March 23.

Right now, we are holding our breath and hoping for the best and no incidents until we go back on the 23rd.   Any and all thoughts and prayers are welcome!

Please note:  Reilly was a preemie, she was born at 27 weeks as a result of a placental abruption.  She spent 68 days in NICU, with very few issues.  She did have an umbilical catheter which the doctors have indicated is the cause of the clot.

For better information please see the following:
http://www.childrensmemorial.org/depts/siragusa/transplant-surgery/what-is-portal-hypertension.aspx
http://emedicine.medscape.com/article/373009-overview