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