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.
Sunday, April 29, 2012
Sunday, April 22, 2012
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.
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.
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!
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