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.
Tuesday, March 20, 2012
Sunday, March 18, 2012
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!
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!
Friday, March 16, 2012
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.
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.
Thursday, March 15, 2012
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.
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.
Tuesday, February 28, 2012
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!
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!
Wednesday, February 15, 2012
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!
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!
Wednesday, January 18, 2012
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.
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.
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