6 month post-surgery Update

I haven't posted since our follow-up visit to Chicago in September because, frankly, some things are hard to accept and talk about.  The visit itself went fine, nothing got stolen and no one got hurt.  She made it through the CT scan without incident, even got big-girl points for getting her IV without the numbing medicine (which scares her and causes a freak-out).  The CT scan showed that her shunt is clotting at one of the connection points.  There is also a kink in the shunt.  All indications since are that the shunt is narrowing (various blood tests and physical markers like spider veins on her body and spleen enlargment).  It is Dr. Superina's impression that the kinking is due to her interval growth (which was a lot in a short amount of time) and, for lack of better words, her guts shifted to accomodate her growth and now the shunt is kinked.  The clotting is likely the cause of the increased amount of spider veins on her body and for being able to see and feel the veins in her abdomen much more clearly (similar to prior to the shunt surgery). 

Reilly is scheduled for a scope procedure this Thursday and we will have a lot better information gained from this procedure.  Since we have been back from Chicago, her ammonia levels spiked and she is back on medicine to keep those under control. 

There is a very good liklihood that Reilly will need what is called "interventional radiology therapy" in an attempt to remove the clot from her shunt and possible straighten it out.  It involves a procedure where the radiologist goes in through veins in her leg and balloons the shunt and cleans it out.  We are not certain at this point whether this will need to be done prior to her follow-up in December or right after the first of the year.  The scope will tell us and her doctors more about how critical the issue is and whether it is reasonable to wait until after the first of the year to try this procedure. 

If for some reason the balloon procedure does not work, the next step would be to go in and replace the shunt.  Yes, all over again. 

Right now, we are still getting our heads and our hearts around this situation. 

We have had some bright news though, Reilly and Cole have a baby cousin!  Isaac David, my brother and sister-in-law's baby, was born October 16.  We are all very excited and glad that he is finally here! 

I will update soon!  Love and thanks to all who keep Reilly and our family in their thoughts and prayers.   

It's Been A While

It has been a while since my last post, and a LOT has occurred.  Reilly celebrated her 5th Birthday with an EPIC Strawberry Shortcake party, complete with water balloons.  She really had a great day.  The kids have started school, but an interesting start it was.  Cole had 2 days of school and then a little storm named Isaac decided to visit us here.  No school for the entire week before Labor Day, including what was supposed to be Reilly's first day of Kindergarten.  Try explaining that to a kid who doesn't fully understand the days of the week yet.  However, we made it.  Reilly has been really enjoying herself at school and seems to be handling everything well.  She also, just yesterday, caught her first fish!  The sound effects made the whole experience priceless.  She was hooting and squealing when she actually reeled it in, we weren't really sure what was going on! 

This week Reilly and I head back to Chicago for her 6 month post-surgery visit.  Hard to believe it has been 6 months already.  She has grown 3 inches since her surgery and she finally made it to 35 pounds!  (It is such a big deal that we got a new car seat for making 35 pounds and keeping it on for 2 weeks!)  So, this is a big check-up.  I will update over the weekend with the news from Dr. Superina and what the CT scan indicates. 

Given what happened last time, I will definitely hold onto my wallet without exception!  Thanks for continuing to lift Reilly and our family up in prayer.  Love to all.....

June 20-21 Chicago Visit / Update

Sorry it has taken so long to post, we have had an eventful couple of weeks in our family.  On Tuesday of last week, Reilly started running fever.  My thoughts were, hey - we are leaving for Chicago on Wednesday and going to a hospital, we should be fine.  Well, Wednesday, she started with the congestion and LOTS of snot.  We made it to Chicago, beautiful weather, and NO humidity.  Her ultrasound looked amazing, shunt is patent and working properly.  There is no buildup on the walls of the synthetic material.  Her spleen is a perfectly normal size (whooohooo), her gallbladder wall has thinned to normal (it was very thick prior to surgery), her liver has reduced in size (still a little large, but very manageable), and all other organs seem to be in proper working order. 

As a treat, we went to eat at RainForest Cafe.  Somewhere between parking with the valet and walking into the restaurant, or sometime while we were in the restaurant, someone stole my wallet.  Yes, I know, NIGHTMARE.  Money, bank card, credit card, ID, insurance cards, everything.  So, after an enormous freak-out session, a long walk, and frantic calls to get my hands on funds (to pay the bill at the restaurant and get the car out of the parking lot), we made it back to the hotel for the night.  I spent much of the rest of that evening on the phone cancelling cards and speaking with the police, trying to figure out how I was going to get on a plane to get home the next day. 

Friday morning we saw Dr. Superina.  The hospital has moved to a brand new, state of the art facility, and I must say that the view from the exam room was absolutely breathtaking.  We had a great view of Lake Michigan on a beautiful summer day.  Dr. Superina is very satisfied with Reilly's progress so far.  She was not happy with the fact that he was dressed in jeans and a shirt and she asked him, "Where's your doctor clothes?"  He told her he thought he would be casual today, to which she replied, "Not even your coat?" (with her hand on her hip, I'm sure you can imagine the scene).  She WAS happy that he said she can do what she seems to be able to handle, making sure to watch any blows to her head and significant blows to her abdomen.  REALLY GREAT NEWS!

So, we make it on the plane, with WAY less hassle than I thought we would have (a huge thank you to Officer Bracken of the Chicago Police Dept. for his help with the report and for faxing it to my hotel).  We get home and Reilly seems to be getting worse, she's very congested and now has no voice and is coughing a lot. 

On Monday,  I started a new job.  Go me!  Reilly had to go to see the pediatrician because she was not sounding good at all.  Because of the fever, she was tested for the flu, and sure enough, Type B.  Lovely. 

As of today, she is feeling much better and she sounds much better.  She still has a little bit of a really nasty sounding cough, but it is loose and moving.  No fever since about Saturday, so the pediatrician thinks we are in the clear.  GIANT SIGH OF RELIEF.  We were concerned about a secondary infection and/or pneumonia, but hopefully that has been avoided. 

We made it through the week, we all survived, and seem to be on the right track.  She will follow up with Dr. Noel in a couple weeks and then back to Chicago in September.  She will have a CT scan then and pending what everything looks like at that point, she may be taken off of Coumadin and put on a different clotting medication that does not require constant monitoring (with blood work, etc.).  So far, looking good!  YAY!!!!

Please continue to keep Reilly in your thoughts and prayers.

Chicago this week....3 months post surgery tomorrow

We have had a very busy past few weeks...and we survived the dance revue!  Reilly thoroughly enjoyed her first ever dance revue, and made it through without incident!  She has been hanging in there, all things considered.  Her bloodwork has been relatively stable, with minor fluctuations.  We will be back in Chicago Thursday and Friday for her 3 month follow up!  I cannot believe that it has been 3 months already.  I am so thankful that as of now, we have had no major issues.  I'm happy to make it through the day without a nose bleed!  I will post after her visit with the results of her ultrasound and exam. 

Please continue with the prayers and support.  They are much needed and deeply appreciated.  Love Always!

Update

On May 30, Reilly saw Dr. Noel for a follow-up visit.  Her blood work was mostly good, her ammonia levels are still high - but at a safer level and being managed with the lactulose.  A few things are either high or low, but are explained by either her medications or effects of the surgery.  Baby girl grew a little over an inch in 6 weeks!  Sprouting up like a weed!  She has not gained enough weight though, less than half a pound.  Now we are working on putting weight on her frame through diet. 

Yesterday, we participated in the Children's Hospital Telethon and Reilly had a grand old time on set.  She was very excited to be a part of the event and also voted herself the cutest kid on the telethon!  Not a shy girl at all.  It was such a blessing to be a part of such a meaningful event.  Without Children's Hospital and Reilly's doctors there and Children's Memorial Hospital in Chicago, I'm not sure that she would be around to be able to participate.  For that reason alone, I will be forever indebted.  We are fortunate in so very many ways and it is nice to be able to do a small part in helping to give back. 

Reilly has a followup in Chicago at the end of June and then we see Dr. Noel again in July.  I am pretty sure we can handle one doctor visit per month.   Let's pray that things keep going the same way and there are no complications! 

So, Happy Summer, Happy Hurricane Season, and continued prayers of health and healing!  I'll keep you posted!

Oh, she will have her very first dance revue in 2 weeks - which should prove to be very interesting.  Anyone who knows me will understand that I'm not really a "dance mom" and this whole dance revue thing is definitely a trying experience for me.  Reilly, however, is a rock star and can apparently handle it all, with a smile!  I'm taking lessons, let's hope they pay off! 

2 months post surgery

Well, Reilly has made it two months post surgery with little to no complication!  Huge sigh of relief here!  She continues on anti-coagulation medication and she is on meds to try to bring down her ammonia levels.  She goes for a checkup with Dr. Noel on the 30th, so we will know more then. 

Currently, Reilly is in Texas at her Meme and Granddaddy's house, riding her bike (yes, with the ladybug helmet) and swimming All Day in the pool!  She was very concerned about being able to go swim.  I'm sure that her grandparents are thoroughly enjoying some one-on-one with her too.

It is entirely amazing to me that such a small person can be such a magnet and bundle of energy.  She has been through so much and it doesn't seem to faze her.  Not even a blink of an eye for bloodwork.  I have found that as long I give her a head's up about what is going on, it's a piece of cake.  I am VERY thankful for that. 

We are going to participate in the Children's Hospital Telethon again this year and are very excited!  As soon as I know when we will be on the schedule, I will post. 

Reilly has been getting ready for her very first dance revue!  We survived (more like I survived) the pictures, which is madness.  I really am not sure that I am cut out for the madness of dance revues.  Reilly is enjoying herself, so that's what counts and makes it worth it. 

We have lots going on to keep us busy.  She has to return to Chicago in June, then again in September, December and then again in March.  We are not certain about how often or any times farther out than one year post surgery right now.  She continues with her bloodwork (hopefully every two weeks now) and will do so as long as she remains on blood thinners. 

Please continue to pray for health, healing and happiness! 

Update

Reilly is 7 weeks post surgery this week.  Things seem to be going pretty well.  Her ammonia levels are still elevated and she will begin taking medicine to try to bring those levels back down.  Her clotting times continue to fluctuate, so the weekly (or sooner) bloodwork will continue.  We follow up with Dr. Noel at the end of the month and will be back in Chicago June 21.  Hopefully things will settle down soon. 

On a lighter note, Cole was named Student of the Month for April - which is fantastic.  We are all so very proud of him, especially since this school year has not been anywhere near normal and he continues to do remarkably well in school.  He is a RockStar in his own right! 

Please continue to keep Reilly in your prayers, only God can know where this journey leads.  

Follow Up Visit in Chicago

Well, we made it back to Chicago and home again!

Reilly thoroughly enjoyed her first plane ride.  It is so awesome to see the wonder in a child's face as they learn things.  Apparently her brother informed her they serve pretzels on the plane and that was all she was after.  She liked watching the planes landing and taking off Friday afternoon when we were waiting for our flight.  I was really proud of her being a good traveler.  She likes to check out the bathroom anywhere you go.  So of course, I found out that you can fit a small child and an adult in the bathroom on the plane without either one of you having to stand on the toilet, but only just barely.  I went in with her because the door lock - which activates the light in the bathroom - was far too high for her to reach.  Indeed an experience, that we had more than once!

Dr. Superina thinks that Reilly is doing very well, her incision looks great (just ask her, she'll show you).  She has two little spots where the suture is visible, but they will eventually go away.  Before the man could get fully into the room, Reilly said, "So, I want to go swim at Meme and Granddaddy's house in their big pool and I want to go to the beach with my Mommy, is it okay to do that yet?"  And he said..."Let me check you out first!"   And then he said..."YES!"  She was so excited, that was the first thing she told her Daddy on the phone.  She still cannot climb and there are other activity restrictions, but swimming is definitely ok (no jumping in the pool though).

We will have the results of the ultrasound on Tuesday and her ammonia levels from her blood work.  Because everything was so close together, the radiologist had not yet read the ultrasound before her clinic appointment.  The good news is, if you are an ultrasound tech, and you are not sure where the shunt is, or how to find it, I can tell you, show you, recognize it on the screen, well, actually, I could just do it for you!  I guess that is what you get for paying attention.  Because the shunt is deeper in her abdomen, it is a little difficult to find and if you are not sure what you are looking for, it is easy to miss. 

Anyway, we will return to Chicago in 6 weeks for the 3 month follow up.  This time, we will visit the new hospital (Children's Memorial Hospital is moving from Lincoln Park to downtown and changing its name to Lurie Children's Hospital) and it is, by all accounts, a state of the art facility.  We will be there for longer this time as all appointments could not be scheduled on the same day.

Her INR (clotting time) is right on track and there is no change in her Coumadin dose.  YAY!  She will continue with blood work to monitor those levels here at home, like before.  Also, her H+H is low, but seems to be coming up and this is also monitored very closely.

Bad News ... no weight gain.  It's amazing to me that such a small person can consume SO many groceries and not gain weight.  The child eats consistently all day long.  Sounds easy right, gain 2 pounds...apparently not.  So, we are working on that.  Otherwise, things look good.

Good News ... Reilly feels good.  She looks a bit healthier, getting some color in her skin, and she feels like the Rockstar she is.  THAT is important.  The fact that she does not feel different from other children, but recognizes that she does have some limitations (well, we as her parents are the limitors, left to her own devices she would probably be skydiving right now), and they don't bother her (yet, I know this will come), those things make this whole situation easier.  God has seen us through this far, and I know, he will guide us through it all.  

Update

Tomorrow, Reilly will be 5 weeks post surgery.  She continues to do remarkably well.  On Friday, she saw Dr. Noel for her first post-surgery visit.  He indicated that, while she looks and seems fantastic, there are some things that we must be concerned about.  She needs to gain some weight - her post surgery weight was the same as her weight prior to surgery, but her current weight is lower than the last time she saw Dr. Noel.  If she doesn't gain weight by her next appointment (5 weeks), she will be placed on a high protein diet. 

Because of the changes to her circulation as a result of the shunt, her body has to acclimate and adjust to the "new" way things function.  As a result, her heart rate is consistently elevated at this time and some of her blood vessels and veins are, and will be, at times very pronounced (almost looks as if they are bulging out of her skin).

There is a concern about how long she has been taking Prevacid and the risk of osteoporosis, the long term use of the Prevacid and the history of liver disease make Reilly very susceptible.  At her next visit, Dr. Noel will begin weening her off of that medication in an effort to reduce her vulnerability.

We also must be very careful about any kind of virus or bacteria in her system, as the "extra" toxins and foreign cells in her body have the potential to cause the shunt to have clumps of cells deposited in it, which, in turn, will make the shunt more likely to clot off.  There is, for the time being, no waiting out a runny-nose or waiting to see if a "bug" or virus will pass. 

All of this sounds very overwhelming at first, as my emotions have gone from one extreme to the other.  None of this information is a surprise, nor unexpected.  It does sound more ominous coming from the doctor, at least more than I anticipated and I think that surprised me more than the actual information.  All of the immediate concerns, and long-term concerns, are things that we (Rickie and I) knew about before  deciding to go forward with the surgery.  The benefits of the surgery FAR outweigh the alternative option of doing nothing.  So, we will do what we must in order to maintain Reilly's health and well-being, under the advisement of and in conjunction with her physicians, and more importantly with the grace of God, in the hope that she will live a very long, high quality and relatively normal life.  My constant prayer is that the good Lord leads me and shows me the steps to take to help my daughter and keep her safe and make the correct decisions.  I also pray that I do not neglect or over look the needs of Cole, and that I keep him safe and healthy as he is deeply affected / effected by this situation as well.

4 weeks post surgery

Well, I feel like a giant rock has been lifted off my shoulders, well, probably because it has!  We started receiving medical bills in the mail about a week ago and thankfully today, we got the bills headed in the right direction for the insurance to take care of them!  Whew!  I was really starting to be worried about that. 

Today, Reilly is 4 weeks post surgery.  She continues to do well.  She is going to dancing for the first time, in a very long time, tonight and she couldn't be more excited!  Her incision looks very good, if you can think of any kind of scar as looking good.  There is one small spot that is a little firm on the end of one of the legs (her incision looks like an upside down Y on her upper abdomen).  Next week, we return to Chicago for a follow-up with Dr. Superina. 

Reilly is really hoping he says it is ok for her to swim, as she is looking forward to getting in the pool this summer. 

She will have bloodwork again Wednesday to check her clotting times and platelet levels.  Hopefully, she is where she needs to be and her Coumadin dose doesn't have to be increased again.  For her last three blood tests, her clotting time has stayed almost exactly the same, below where it needs to be, and her dosage has steadily increased.  I think the pharmacy lady at Walgreens is getting tired of seeing me every week with a new prescription for an increased dose! 

Reilly's appetite remains VERY good, basically eating non-stop, all day long.  I will update again soon!

Please continue to lift prayers that things continue as relatively smooth as they have so far.  It is amazing to me how the good Lord works...mysterious ways, mysterious ways.  I'm really glad He does though! 

3 Weeks Post Surgery

1,865 miles, 3 weeks and 5 days ...we are HOME!  We made it back to Louisiana on Saturday and got to enjoy Easter at home.  Reilly was very excited about getting to sleep in her own bed and using her own potty!  To me, it's amazing the things I really missed from home.  Sitting outside, being hot, smelling fresh cut grass, seeing lots of trees, my dogs, MY BED and MY BATHTUB!  

Reilly is doing very well.  She tires easily, but that is to be expected.  We have her follow up appointments with her doctors here scheduled and Reilly and I will return to Chicago for an appointment on April 27.  After that, she will do her 3 month and 9 month follow up here and return to Chicago for 6 month and 1 year. 

She will remain on Coumadin until further notice and have all the bloodwork required to maintain her clotting levels appropriately.  All of the steri-stips are off of the incision and she could not be happier or more excited about that.  The problem now is keeping her low-key and making sure that she doesn't do anything to disturb the healing process.  She is ready to climb and jump and swim, especially. 

In the car today, headed to the grocery store, she said, "I am so, so really glad to be home, doing normal stuff."  Gotta love that girl! 

Cole made a welcome home poster for Reilly that was on the door when we drove up to the house and that made coming home that much sweeter.  I am very happy to be home and trying to not be overwhelmed with the follow-up and monitoring that Reilly still has to be done.  Be sure though, there is a definite sense of relief right now.
 

Two Weeks Post Surgery (Tomorrow)

All things considered, Reilly is doing fantastic.  It seems to be very hard to keep this little girl down!  We have been trying to keep ourselves from going crazy within these four walls, so we have ventured out into the city.  We visited Shedd Aquarium, drove by Wrigley Field, and went to Water Tower Place.  We are hoping to go to the Sky Deck tomorrow, pending weather. 

Reilly has learned how to swallow pills because she didn't like the way they tasted crushed.  So, first try, and ever since, not a problem at all!  I'm impressed because I think I was 16 before I could swallow pills.  Her appetite has returned, VERY aggressively!  She is eating almost nonstop all day.  Not complaining, it's just such a drastic change from a few days ago.

Tomorrow is 2 weeks post surgery, which is hard to believe.  Reilly has bloodwork in the morning.  Her follow-up with the surgeon is scheduled for Friday and she has an ultrasound scheduled for Thursday. 

Thank you for all of the prayers and support.  Keep them coming, still have a long way to go, but we are getting there.  I'll keep y'all posted! 

Post Surgery Update

The ROCKSTAR was discharged from the hospital on Saturday, March 24.  After spending Monday through Thursday in PICU, she was stepped down to the regular med-surg floor on Thursday and was discharged on Saturday.  She remains on blood thinners and will require frequent blood work to measure clotting time and monitor the dosage.  Her other medications remain the same. 

HAPPY BIRTHDAY COLE!  He is 9 today and it is his first birthday that I am not actually with him.  I did however get to sing to him on the phone on his way to school this morning!  Just wanted to throw that in before I forget.

Reilly is doing AMAZINGLY well, considering she just had major abdominal surgery.  She is moving around almost like normal.  She gets very tired and weak really quickly, but she has hardly eaten any food for 8 days now.  Her appetite has been basically nonexistent, until yesterday!  She ate some cookies, a granola bar, some crackers and olive pizza (both green and black).  She has asked for an apple this morning, so guess what we are going to find...

It is encouraging to see her appetite increasing, as well as her ease of movement this soon after surgery.  She is not a fan of the steri-strips on her belly.  They should start coming off this week.

She has made significant progress in a very short time.   I am thankful that she is tough and has legions of prayers on her side, otherwise this could be a very long and very arduous recovery.  There will be some activity restrictions while she is on blood thinners and to allow her belly time to fully heal.

We will stay in Chicago for her first follow-up appointments, return for the one-month, six-month, and one year marks.  The rest of her follow-up and blood work will be done at home at Children's New Orleans.

Hopefully, this time sails by and we will be home soon!   Reilly and I really miss her Daddy and Cole, but are very glad that Meme (my mom) is able to stay and help us for a while.  We are thankful that Grammy (Rickie's mom) was able to come for the surgery too.  Ms. Amanda is the BEST EVER for taking care of our puppies while we were gone and everyone else that has helped make this happen deserves thanks as well.  My wish is that we will someday be able to pay it forward! 

Post Surgery Details and Update

Reilly made it through the surgery very well and is recuperating nicely.  She is currently feeling the pain and learning when she needs the pain medication.  She is on antibiotics, iv fluids, and heparin.  The doctors are working on finding the right dose of blood thinners, so that keeps changing every 4 hours. 

As some know, the doctor was unable to do the Rex Shunt on Reilly.  Upon accessing her liver via fiberoptic camera, she had no remaining portal vein inside the liver.  There was no tissue left in which to attach the shunt.  SO, a mesocaval shunt was done (plan B).  The doctor used a synthetic piece of material to shunt the mesenteric vein to the inferior vena cava.  This allows most of the blood from the gut to flow into the inferior vena cava and back to the heart.  Her liver will continue to function as it apparently has been for a very long time, only filtering the blood brought in from the hepatic vein.  The doctor used an adult size piece of material so that as she grows, it will be able to handle larger capacity without having to replace the shunt.

The major concern for this procedure is the risk of the shunt clotting off.  It is a synthetic piece of material and the body will naturally attempt to close it off.  She will remain on blood thinners for at a minimum 6 months, with the real possibility of taking them for her lifetime.  She should hopefully be able to resume normal active little girl activities (like soccer and/or gymnastics) in about 6 months or so.

Reilly is handling the recovery pretty well.  She is feeling the pain in her belly, but we think she may have started passing gas, which is causing pressure in her abdomen and causing discomfort.  She is moving her limbs relatively well, we are trying to get her over being scared to move.  She is on pretty heavy duty pain medication, but the doctors and nurses keep telling us to use it, that is what it is for.  She dozes on and off.  She remains in ICU for now, but will probably be moved to a regular room either later tonight or tomorrow.

The Anderson tube? (tube through nose into stomach using suction) and the Foley catheter were removed earlier today and she is MUCH happier.  She was taken off of the oxygen cannula early this afternoon and seems to be doing just fine.  She had a CT scan today to check to see if the shunt is patent, and we are waiting for those results from the transplant team.  She finally got to have ice chips and water, but has not been incredibly thirsty since she is able to have fluids!

We finally got a really big smile a few minutes ago, which is very comforting.  She still has an arterial line, a central line, and an iv in her hand and in her foot.  She got a happy from her brother today and Cole's visit seemed to really brighten her mood.  She also got a care package from her Aunt Ashley and Hello Kitty is sitting patiently on her bed, watching over her as she sleeps.

The doctors have indicated that she is doing remarkably well post surgery, compared with other children they have seen with similar procedures.  SO, again, apparently, ROCK STAR status confirmed! 

Thank you to everyone for your thoughts, prayers, wishes, etc.  Please continue because tomorrow she has to sit up in a chair, which I am certain is not going to be the most fun experience we have ever had.  She has some way to go to fully recover, but she is well on her way.

I am thankful to the good Lord that we have had, all things considered, a pleasant road so far.     

The Night Before Surgery...

Tomorrow is the big day and it starts very early.  We went to the Navy Pier today and visited Build-A-Bear workshop and the kids had a blast at the Children's museum.  It was pretty awesome.  On a side note, we rented a garage to keep our car in for the month and now we don't have to worry so much about someone trying to break in, or stealing parts off our car.  (Which someone already tried to break in and took a rubber piece - guess they thought we didn't need that part).

Reilly feasted tonight on a BLT, Mac N Cheese, Cole Slaw, Tomatoes, and fruit.  Her belly is full and she's a clean and happy girl.  We have our stuff packed for tomorrow and we will head out early in the morning.  Her surgery is scheduled for 8:45a.m. and can take 8 -12 hours.  I will post on facebook when things are finished and the status.  I do not expect to post on the blog until things are settled, so hopefully by Tuesday I can update on here.

Please ask for skilled hands and minds tomorrow, strength and understanding, and health and healing in your prayers.  God Speed, for sure, because I am not exactly  for patience.  I am armed with a kindle to pass my time, and thank the good Lord for that little invention too! 

Thanks again for the prayers and thoughts, love, support and for Michelle, fairy dust!  :D
 God willing, all will go smoothly.  By the way, Baby Girl just fell asleep and her mama is not long after her! 

Sweet Dreams and Good Night!

Meeting with Surgeon / Bloodwork

Well, all things are a go for Monday.  We met with Dr. Superina today and we are very satisfied with his demeanor, knowledge and expertise.  I have to admit that I was watching his hands most of the time and did not detect a tremor, so that is a good thing.  (Who really does that, this girl, apparently)  Reilly interacted well with him and seemed very comfortable.

A neat thing is that one of the fellows on the surgical team knows Dr. Noel from a long time ago.  Such a very small world.  There is a significant measure of comfort in that too.   Everyone took a lot of time to make sure that we, the parents, are comfortable and knowledgeable about the situation.

After the appointment, Reilly had lab work done.  15 tubes of blood for 23 tests!  That's a lot of blood for a little person.  

Dr. Superina showed us the significant gastric varices and the collateral veins that Reilly's body has formed and how the blood is flowing through these unstable veins.  He indicated that waiting, in this situation, is not really an option unless you are waiting for something to happen.

On Monday, the team is going in prepared to perform the meso-rex shunt.  Before taking her jugular vein, they will attempt to use one of the collateral veins that have formed in her abdomen.  There is no way of knowing if these veins are viable until seen.  If not, the jugular vein will be used.  The meso-rex shunt will restore normal blood flow to the liver by bridging over or around the blockage in the portal vein.  This reduces the pressure in the portal venous system and things will basically operate the way they were intended.
 
 Also, our plan B is the mesocaval shunt.  This will direct the blood flow from the portal venous system (and most of the gut) to the inferior vena cava.   This has the intended effect of reducing the hypertension in the portal venous system and reducing the pressure in the varices.  This procedure has a high effective rate in young children, with few complications, encephalopathy being the major one IN THEORY.  Dr. Superina indicated that they have performed this procedure many times in children and have not seen encephalopathy in their patients. 

The surgery itself may take up to 12 hours (because of its highly delicate nature).  Reilly will be in ICU for several days post surgery and then moved to a regular room for the last few days of her hospital stay.  I will post about her status as often as possible. 

Thank you for all of the well wishes and the prayers.  Please continue as the toughest part of this starts on Monday. 

We Made It To Chicago

Well, we made it to Chicago.  My first observation of the city (it's been a long time since I have been here) is that there are a lot of people.  The area where we are, Lincoln Park, reminds me a lot of uptown (university area).  Just a lot more people and cars don't seem to pay attention to pedestrians very much.  Other than that, it's fine.  Yesterday was the hottest day in March on record for the City of Chicago.  I guess the heat is following us! 

The kids were AWESOME on the drive up.  Really awesome, I couldn't ask for a better trip with a 4 yr old and an almost 9 yr old.  I'm so proud of Reilly because she stayed dry the entire time!  (That's a really big accomplishment with the set backs in potty training we have had in the past year.) 

We go to the hospital this morning for a CT scan.  We are expecting to be there for 4 hours or so because of the sedation.  They are going to use dye too, and that takes a while to wear off. 

Right now, I'm watching news coverage of Rob Blagojevich leaving the city (he's at the airport, taking pictures with random people) to go to prison in Colorado.  Maybe he will take the heat with him. 

I'm starting to get a little anxious about all of this.  Time seemed to fly on the way up here, but now that we are here, it seems to have slowed down.  I will update later.  Please continue to keep us in your prayers. 

One Year Ago Today...

It's hard to believe that it has been an entire year since this chapter of our lives began.  I sometimes (albeit rarely) wonder where the time has gone.  Mostly, this has been one of the longest and hardest years of my life. 

Reilly has held up remarkably well.  Those that know and love her are amazed by her strength and stamina.  I thank God every day that she is young enough to have her memories glossed over by time once she is old enough to really understand the issues with her body.  We are fortunate that she is not scared and she is not, for the most part, in pain.  She is becoming a professional at taking (her own) vital signs!  Maybe she will be a step ahead in a career in the medical field.  What other 4 yr olds really know where their spleen and liver are? 

It is a very hard thing as parent to accept that there are things going on in/with your child that you have absolutely no control over.  I continue to think that every single day Reilly is happy, alert and otherwise healthy (in relative comparison) is a gift.   She drives us a little crazy sometimes, with her sassy attitude and unbending will and determination.  If you think about it though, without those attributes, she may not have made it this far, this well, for this long.  SO, even if I want to sometimes duct tape her mouth shut and tie her to a chair, I am extremely thankful for that fiery personality and mindset. 

Today is also 2 weeks before we leave for Chicago.  I think we have everything we need, or at least I hope so!  If we haven't got it yet, I guess we don't need it.  All of the arrangements and confirmations are in order, except for Kohl's house, which hopefully will be taken care of next week.  After that, the only thing remaining is to pack our stuff, which may be easier said (or written) than done.  We will make it though.

Cole is going to have his birthday celebration early so that we can all participate since Reilly and I will be in Chicago on his actual birthday.  He's a champ and is doing a great job at being helpful and thoughtful, as if he could be anything but.  I think he is becoming a little nervous, just like the rest of us; but all in all, as long as he is kept in the loop about the arrangements and the basic plan of attack, he is a smooth operator! 

 Please continue to keep our family in your thoughts and prayers.  As I have said before, we have a long road ahead of us, but with the grace of God, we will continue to see blessings and showers of love upon us.  We are surrounded with love and support from our family and friends.  People from all over have lifted our family up in prayer.  We are forever grateful.  I will keep you posted with our progress through this adventure!

ALL THINGS IN PLACE FOR SURGERY!

Some already know, many do not...all things are in place for Reilly's surgery!  She is scheduled for March 19, with pre-op on March 15 & 16.  We leave for Chicago on March 13.  All paperwork is in place and ready to go!

Presently, Reilly is holding up well.  We are going to have Cole's birthday party early because our family will not be together on his actual birthday (he is very excited about his party, however).  She goes to Dr. Noel on the 24th of this month and will have bloodwork at that time.  Barring certain issues (like very low numbers or an active bleed), she will not have another scope prior to her surgery!  We will see her pediatrician shortly before we leave for Chicago to have her cleared for the surgery and we will be all set. 

We are very thankful for all of the prayers and support that have helped us this far.  Please continue to pray for health and healing as Reilly makes her way through surgery and recovery.  I will post soon!

Status Update

Reilly was released from Children's on Tuesday, Jan. 10 and has been doing fairly well since.  She is currently VERY congested as a cold has made its rounds through our house, and seems to be the culprit.  Other than that, things have been quiet and subdued. 

As many of you know, Reilly's Aunt Holly passed away on January 8, 2012 due to complications from Cystic Fibrosis.  We have had a lot on our plates with this profound loss and with the Polka Dots & Pigtails Benefit all at the same time.  The benefit was a HUGE success and we extend our deepest gratitude and sincere thanks to all who donated - prizes, gift cards, money, time, and anything else - in helping to meet our goal and exceeding our expectations. 

There has been a set back in the situation with Reilly's surgery with the insurance and the fee schedule and negotiations for payment.  I guess it is all about the money now.  Unless and until an agreement is reached, her surgery will be postponed.  I have spent countless hours on the phone with Louisiana Medicaid and Children's Memorial Hospital and Dr. Noel trying to figure this out.  The communication breakdown has been resolved, but that still doesn't fix our problem.  I am examining other avenues and waiting (rather impatiently) for something to happen.   

Please pray this situation resolves quickly and continue to lift Reilly and our family up in prayer. 

10th Scope / Banding

Reilly had another scope and banding today.  Dr. Noel banded three spots in her esophagus and is watching another.  She has still has extensive gastric varices.   Dr. Noel and I, were surprised that she had such significant development after such a good scope last time and such good bloodwork on Friday.  Due to our family's recent loss, the plan was originally to let Reilly go home and we would monitor her care at home, where under normal conditions she would have been admitted overnight.  In short stay, she was unable to hold down any fluids.  After the third episode, it was determined that Reilly needed to stay tonight for medication, observation and safety reasons because of the bleed risk.  So, here we are, disappointed at LSU's performance tonight, but pleased with the fact that Reilly has presently kept about 6 oz of apple juice down for over 4 hours.  She's had a few gagging episodes, but no expelling, so that's good.  I will update tomorrow or the next day with more information.  As it stands right now, we will be headed home sometime in the morning.  Thanks again for all of your thoughts and prayers. 

Friday's Bloodwork

Reilly had bloodwork done on Friday and for the most part it was good.  She is scheduled for another scope on Monday, which will hopefully be the last scope for a while, once she has her surgery.  We are doing our best to prepare, and are still waiting on one final piece of paperwork to be completed before we are completely set to go forward.

Please continue to keep our family in your prayers.

Also, don't forget ... POLKA DOTS & PIGTAILS BENEFIT ... January 14, 2012@7pm.  Please join us.  We have tons of prizes and would love to see you there.