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!
Tuesday, March 27, 2012
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!
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.
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