Excited about the new "travel bags" from Carrie Lawver!We are home.... sorry that it has taken me so long to give an update! I want to start by thanking all of you for what you have done... can I just share with you a few examples of how you have blessed our family
1- Prayers! We know that you are all praying for us! We could sense that in many ways this week!
I joked that there must have been more of you praying for our trip to Cincinnati as I was traveling alone with the girls – we made it in 7.5 hours, had no fighting, no whining and it was so smooth. On the way home with Jed to help it took 10 hours, fighting and whining where at an all time high and it was not fun! So we still have to determine whether Jed or less prayer is to blame!!!
2- We paid $114.00 for 11 nights in the Marriott hotel. Can you believe it!!! Thank you sooooo much to all of you that gave us Marriott points. A special thank you to Nicole Miller for her unbelievable generosity in giving us 30,000 points! What a huge blessing!
3- We paid for very little food on this trip as Jen Sturtevant arranged an amazing group gift of gift cards in the amount of $400.00.
Jed and I have been so humbled at the way our friends and family have surrounded us with support. We could not have made it through this last 3 months without all of you. We will forever remember all of the kindness that has been poured on us and are eager to be able to be on the giving end instead of the receiving end! Thank you seems so inadequate to express how we feel.
It has been a crazy couple of days trying to get back in the swing of things and figure out how Madison is adjusting in her normal routine.
Since I posted here is what has happened:
We met with Dr. Pena on Friday at Cincinnati Children's. Dr. Levitt was out of town so we had our departure visit with Pena. He is actually the director of the whole program so we were fortunate that we got to meet with both Dr's during our stay! They are both on the exact same page so there was no differing info. Dr Pena said that based on Fridays x-ray Madison was getting a little backed up. He talked in length with us about Madison condition. He stated at the beginning of the appointment “Madison is unfortunately no where near done, there is a long road ahead of us”. UGGGHHH. So here is where we stand moving forward:
Our biggest obstacle to overcome (and biggest prayer request) at this point is figuring out whether Madison has any bowel recognition. We are not yet convinced that she is aware of her need to go to the bathroom. We have had some success with pooing in the toilet but we have had a larger amount of accidents. We are sitting her on the toilet very often for long periods of time and sometimes just happen to “catch” the bowel movement. Dr. Levitt had told us that short term that could be a problem because of how badly enlarged her colon and rectum are. Dr. Pena seemed concerned on Friday that the recognition was not coming as he feels usually that would have happened already by the end of last week. Dr. Pena informed us that unfortunately there is a very small fraction of children that will never get that back and Madison could be in that percentage. He said that there is no explanation and no cure. (A side note from Jed: I am sick of hearing...."there is a very small number of children.....” followed by our child's diagnosis!)
If we determine that Madison does not have bowel recognition and control she is no longer a candidate for the resection surgery. If they remove the lower part of her colon she will be more prone to diarrhea then constipation. Incontinence with diarrhea is far worse then incontinence with constipation. So the treatment in this case would be one of two options. Continue on high amount of laxatives and see if we can figure out the pattern of her colon and try to catch all of her bowel movements. She would have to remain in diapers and would not be able to do things like : play at others houses, go to sleep overs or vary from her restricted eating schedule at all as that would make matters much worse. The other option would be to totally ditch the laxative and start a lifetime routine of daily enemas. We are not at all excited about that as it still would not give her a good quality of life and it would be draining on us and her. If you read the earlier entries you know how AWFUL it is to give these enemas. They are not little Fleet enemas that you get at the drug store. We have a full blown medical enema kit here at home that we had an hour long training on how to use! The sight of it would scare any of you away! Once we prove that we could successfully empty her colon every day in this manner we would look at having the Malone procedure surgery done. This is a surgery where they pull your appendix through your belly button and then add a port. Madison would then be able to administer her enemas through her belly button instead of rectally. We would do one enema a day and that would clean her colon allowing her to wear underwear and have no accidents. This would have to continue for life.
We met with Dr. Pena on Friday at Cincinnati Children's. Dr. Levitt was out of town so we had our departure visit with Pena. He is actually the director of the whole program so we were fortunate that we got to meet with both Dr's during our stay! They are both on the exact same page so there was no differing info. Dr Pena said that based on Fridays x-ray Madison was getting a little backed up. He talked in length with us about Madison condition. He stated at the beginning of the appointment “Madison is unfortunately no where near done, there is a long road ahead of us”. UGGGHHH. So here is where we stand moving forward:
Our biggest obstacle to overcome (and biggest prayer request) at this point is figuring out whether Madison has any bowel recognition. We are not yet convinced that she is aware of her need to go to the bathroom. We have had some success with pooing in the toilet but we have had a larger amount of accidents. We are sitting her on the toilet very often for long periods of time and sometimes just happen to “catch” the bowel movement. Dr. Levitt had told us that short term that could be a problem because of how badly enlarged her colon and rectum are. Dr. Pena seemed concerned on Friday that the recognition was not coming as he feels usually that would have happened already by the end of last week. Dr. Pena informed us that unfortunately there is a very small fraction of children that will never get that back and Madison could be in that percentage. He said that there is no explanation and no cure. (A side note from Jed: I am sick of hearing...."there is a very small number of children.....” followed by our child's diagnosis!)
If we determine that Madison does not have bowel recognition and control she is no longer a candidate for the resection surgery. If they remove the lower part of her colon she will be more prone to diarrhea then constipation. Incontinence with diarrhea is far worse then incontinence with constipation. So the treatment in this case would be one of two options. Continue on high amount of laxatives and see if we can figure out the pattern of her colon and try to catch all of her bowel movements. She would have to remain in diapers and would not be able to do things like : play at others houses, go to sleep overs or vary from her restricted eating schedule at all as that would make matters much worse. The other option would be to totally ditch the laxative and start a lifetime routine of daily enemas. We are not at all excited about that as it still would not give her a good quality of life and it would be draining on us and her. If you read the earlier entries you know how AWFUL it is to give these enemas. They are not little Fleet enemas that you get at the drug store. We have a full blown medical enema kit here at home that we had an hour long training on how to use! The sight of it would scare any of you away! Once we prove that we could successfully empty her colon every day in this manner we would look at having the Malone procedure surgery done. This is a surgery where they pull your appendix through your belly button and then add a port. Madison would then be able to administer her enemas through her belly button instead of rectally. We would do one enema a day and that would clean her colon allowing her to wear underwear and have no accidents. This would have to continue for life.
Not horrible – but not really a way that we want Madison to have to live. It is a much better option compared to taking extremely high dosages of laxative for life. The Dr.s can not give us the side effects of taking these for long periods as this is a relatively new program.If we determine over the next little while that she does have control they will need to prove that she can hold liquid in her colon without having an accident (not sure how they test that...I am sure it would be another fun test involving an enema!) If she passes that test she would be able to have the surgery and would most likely be fully continent and able to have bowel movements on her own with little or no laxative. This is the only option that we have right now that would not demand a form of treatment for life. So pray for this!! We are uneasy about our little sweetie undergoing such a major surgery but with the goal of reaching a good quality of life for her this seems like the only good option.
We have had days since we have been back that we though maybe she was making some connections with the feeling to go potty and then the next day have 3 accidents with no clue that they had happened. This morning we had good success on the potty so I am hopeful that we can go all day with no accidents. We will see. I have to get an x-ray today to send via email to Dr. Levitt to verify that she is empty and does not need to increase the dosage of ex-lax. I PRAY that it is good news!
Thank you all sooooo much for your continued prayers for Madison and the rest of our family! It has been a rough road but we are fully confident that the Lord knows everything about our sweet girl and about what is ahead for her. We are confident that He will lead us in the direction that we are supposed to go and along the way He will keep Madison safe in His hands. We also believe that He is fully capable of healing Madison's colon even though we have been told that it is “impossible”. So we will continue to daily pray for a miracle while pursuing the best avenue for her to have a good quality of life where she is accepted in society.
We will keep you up to date! I am also trying to get a picture of her colon that they gave us at Cincinnati on the blog.... it is fascinating and it so clearly shows why we have problems... I will see what I can do!
Love to you all,
Nikki
We have had days since we have been back that we though maybe she was making some connections with the feeling to go potty and then the next day have 3 accidents with no clue that they had happened. This morning we had good success on the potty so I am hopeful that we can go all day with no accidents. We will see. I have to get an x-ray today to send via email to Dr. Levitt to verify that she is empty and does not need to increase the dosage of ex-lax. I PRAY that it is good news!
Thank you all sooooo much for your continued prayers for Madison and the rest of our family! It has been a rough road but we are fully confident that the Lord knows everything about our sweet girl and about what is ahead for her. We are confident that He will lead us in the direction that we are supposed to go and along the way He will keep Madison safe in His hands. We also believe that He is fully capable of healing Madison's colon even though we have been told that it is “impossible”. So we will continue to daily pray for a miracle while pursuing the best avenue for her to have a good quality of life where she is accepted in society.
We will keep you up to date! I am also trying to get a picture of her colon that they gave us at Cincinnati on the blog.... it is fascinating and it so clearly shows why we have problems... I will see what I can do!
Love to you all,
Nikki
1 comment:
to offer you some hope....we were told jack might never get the feeling again either because his rectum was so stretched. it took about 6-8 weeks of sitting twice a day, the same time each day, for 10 minutes and it did come back. now, he goes on his own with rarely a mess!!!!! so, have hope!!!
Post a Comment