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.
Sunday, April 22, 2012
Monday, April 16, 2012
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!
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!
Monday, April 9, 2012
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.
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.
Sunday, April 1, 2012
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!
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!
Tuesday, March 27, 2012
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!
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!
Tuesday, March 20, 2012
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.
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.
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!
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