Reilly had another scope and banding on August 10, where Dr. Noel banded 4 spots in her esophagus. Things have been a bit hectic and crazy around here: we moved to a new house, Reilly turned 4, and school and soccer is starting. As you can imagine, time is hard to come by, so I apologize for the delay in updating.
Reilly is doing pretty well. Outwardly, she seems fine, looks good, is VERY proud to be 4. Inside, her spleen is enlarged, she has some issues with some of her bile ducts and her pancreas, the gastric varices are extensive and growing, and she has some internal hemmorhoids that have formed. We go for a clinic visit tomorrow, where we will talk with Dr. Noel and also have follow-up bloodwork. Hopefully, it won't take me weeks to update!
We are in the process of scheduling appointments with a couple of surgeons to discuss how to proceed and once we have good information, I will post that as well.
Thank you so much for your continued support and prayers. Please keep it up!
Tuesday, August 23, 2011
Thursday, July 7, 2011
MRA and Clinic Visit
Last week, on June 29, Reilly had an MRA (venogram) done at Tulane. We are waiting for the results of that test and I will post as soon as I know what Dr. Noel says about them. Yesterday, Reilly went for a clinic visit. Dr. Noel is confident that we can wait 4 more weeks before doing another scope and possible banding! This is dependent upon her blood test results, which should be in today. She seems very stable and as long as she stays that way, we will try to wait as long as reasonably possible in between procedures. There is no way of knowing, except through blood tests and through scopes, exactly how quickly the varices are forming in her esophagus. I will post as soon as I know more information about the MRA and her blood work.
Please continue to lift Reilly and our family up in your prayers.
Please continue to lift Reilly and our family up in your prayers.
Wednesday, June 15, 2011
7th Scope / Banding
At her last clinic visit, Reilly's blood ammonia levels had significantly decreased. Needless to say, we were very excited about that. Then, our family participated in the Children's Hospital Telethon, which raised over $1.7 million for Children's Hospital New Orleans! It was definitely a neat experience and we hope to be a part of it again.
Today, Reilly had another scope and had two bands placed. She did have an active bleed (a very slow one, but definitely fresh blood) this time. She is spending tonight at Children's and we will go home in the morning if things progress as usual. She is sleeping hard right now, and snuggling her stuffed monkey, but appears to be doing just fine.
Thank you all for keeping us in your thoughts and prayers. I will update as things happen, and they seem to be slowing down a bit (thankfully), but we still have an interesting road ahead. She will have a MRV (venogram) within the next couple of weeks, and bloodwork and clinic visits and all that good stuff. SO, that's it for now!
Today, Reilly had another scope and had two bands placed. She did have an active bleed (a very slow one, but definitely fresh blood) this time. She is spending tonight at Children's and we will go home in the morning if things progress as usual. She is sleeping hard right now, and snuggling her stuffed monkey, but appears to be doing just fine.
Thank you all for keeping us in your thoughts and prayers. I will update as things happen, and they seem to be slowing down a bit (thankfully), but we still have an interesting road ahead. She will have a MRV (venogram) within the next couple of weeks, and bloodwork and clinic visits and all that good stuff. SO, that's it for now!
Thursday, June 9, 2011
Clinic Visit and Bloodwork
Yesterday Reilly had a clinic visit and bloodwork. The clinic visit went fairly well, or as to be expected. No really significant change, her liver is not quite as enlarged (YAY!), but still enlarged; and her spleen is now somewhat enlarged (BOO!), but that is apparently a normal thing. Dr. Noel will monitor the spleen very closely because serious problems can develop from hyperspleenism (I think that is how you spell it). Her medications will remain the same for now. I am working on scheduling the venogram (which will be performed at Tulane) and Reilly is scheduled for her 7th Scope and Banding next Wednesday.
Don't forget, our family will be interviewed during the Children's Hospital Telethon on Saturday, June 11 at 6:15 p.m. on Channel 6 / WDSU.
Don't forget, our family will be interviewed during the Children's Hospital Telethon on Saturday, June 11 at 6:15 p.m. on Channel 6 / WDSU.
Monday, May 30, 2011
Texas Chilidren's Visit
Happy Memorial Day! A special thanks to all of our service men and women for their sacrifices. Where would we be without them?
Last Wednesday, we saw Dr. Karpen at Texas Childrens Hospital Liver Center. This visit was very informative. He does not recommend surgery for Reilly until she is at least 5, because she is so young. She also needs to be a bit bigger, allowing her veins time to grow and to see what her body is going to do on its own to try to correct the problem. The banding should continue for as long as it seems to be controlling the varices. If Reilly bleeds again, we have a completely different ballgame. He recommends that we let her be a kid, while she can. Dr. Karpen is testing for an underlying condition that may be why the umbilical catheter caused the clot - biliary issues, protein issues and clotting issues - because it is so rare, with modern medical technology, that the catheter would be the only culprit. It will be a couple of weeks before we get the results of these tests. We also need to schedule a MRV (venogram) and have the films forwarded to Tx Children's for his review. He still has to review the CT scans because there was a problem with the CD received from CHNOLA. We still have to discuss his recommendations with Dr. Noel (whom he spoke VERY highly of) and determine the best plan for Reilly taking into consideration Dr. Karpen's suggestions and opinions.
We have been invited to participate in the Children's Hospital New Orleans Telethon on June 11 and 12! I will update with more information some time next week. Reilly is presently scheduled for more blood work and a clinic visit sometime next week and another EGD/Banding procedure on June 15.
I cannot say THANK YOU enough for keeping Reilly and my family in your thoughts and prayers. Please continue as we have a long road ahead. We are so very fortunate to find ourselves surrounded with such great and understanding friends and family - we really do not know where we would be without you.
Last Wednesday, we saw Dr. Karpen at Texas Childrens Hospital Liver Center. This visit was very informative. He does not recommend surgery for Reilly until she is at least 5, because she is so young. She also needs to be a bit bigger, allowing her veins time to grow and to see what her body is going to do on its own to try to correct the problem. The banding should continue for as long as it seems to be controlling the varices. If Reilly bleeds again, we have a completely different ballgame. He recommends that we let her be a kid, while she can. Dr. Karpen is testing for an underlying condition that may be why the umbilical catheter caused the clot - biliary issues, protein issues and clotting issues - because it is so rare, with modern medical technology, that the catheter would be the only culprit. It will be a couple of weeks before we get the results of these tests. We also need to schedule a MRV (venogram) and have the films forwarded to Tx Children's for his review. He still has to review the CT scans because there was a problem with the CD received from CHNOLA. We still have to discuss his recommendations with Dr. Noel (whom he spoke VERY highly of) and determine the best plan for Reilly taking into consideration Dr. Karpen's suggestions and opinions.
We have been invited to participate in the Children's Hospital New Orleans Telethon on June 11 and 12! I will update with more information some time next week. Reilly is presently scheduled for more blood work and a clinic visit sometime next week and another EGD/Banding procedure on June 15.
I cannot say THANK YOU enough for keeping Reilly and my family in your thoughts and prayers. Please continue as we have a long road ahead. We are so very fortunate to find ourselves surrounded with such great and understanding friends and family - we really do not know where we would be without you.
Wednesday, May 18, 2011
6th Procedure
We Are Home!!! Yay! Reilly had only one very small varix (I think) in her lower esophagus, which was too small to band. There are signs of some that will be enlarging and those will need to be banded at her next procedure in 4 weeks. We are all excited that we did not have to spend the night in hospital, we were almost giddy on the way home!
She will go to the clinic in about 3 weeks and have extensive blood work (liver panel, ammonia levels, CBC, etc) at that time. She has to remain on the new medication for a while longer before they can get a realistic look at whether it is helping to control the ammonia levels.
Reilly's appointment at Texas Children's Hospital is next week, so we are getting ready. Thanks to everyone for the thoughts and prayers.
She will go to the clinic in about 3 weeks and have extensive blood work (liver panel, ammonia levels, CBC, etc) at that time. She has to remain on the new medication for a while longer before they can get a realistic look at whether it is helping to control the ammonia levels.
Reilly's appointment at Texas Children's Hospital is next week, so we are getting ready. Thanks to everyone for the thoughts and prayers.
Tuesday, May 17, 2011
Tomorrow's Procedure
Reilly will have her 6th procedure tomorrow. Hopefully, we will get to come home tomorrow afternoon - as long as there is nothing to be banded, so keep your fingers crossed. The only way to know if any varices have formed (or re-formed) is to go in and have a look. I will post as soon as possible. Please keep her in your prayers.
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