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.
Friday, March 16, 2012
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.
Monday, January 9, 2012
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.
Saturday, January 7, 2012
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.
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.
Subscribe to:
Posts (Atom)