Thursday, July 17, 2008

the road ahead...

Restless Natives...
we have taken up shooting over superheros as a way to pass time.



so where do we go from here? Dr. Levitt has expressed to us that he really feels like Madison will get full bowel control in the near future but, how do we get to that point? here is the plan as best I understand it.

When we leave this next week she will be in one of 3 categories:
1- stooling on her own with no meds
2- stooling with the help of laxatives if she is still prone to constipation
3- stooling but on meds to help her not have diarrhea

Dr. Levitt said that there is a good chance that she will go from being constipated in her past to now more prone to diarrhea. A very common problem after having a portion of your intestines removed. He believes that if that is the case it will fix itself in the next month or so once the body figures out how to function in it's "new state".


His plan is to give the bowels about a month to try and figure things out, or as he says, hit the home run. His idea of a home run would be to have her emptying her colon everyday with no accidents and in big girl undies. If we can not get to that point within 4 weeks he will take her off of all meds (either laxatives or bulking) for 3 months and start daily enemas. the reason for this is to make sure that we are giving the colon time to heal. He feels that if the "homerun" is not achieved within that time frame it is a sign that the colon is not ready yet and we need to give it more time off. The purpose of the daily enemas is to manually make sure that she is completely empty each day so that the colon does not get impacted again. It will allow us to have her in underwear with no accidents as she will only stool immediately following the enemas.


After 3 months of doing daily enemas, if that is the route that we need to go, we will try again without enemas and see if the colon is ready. This will repeat until we get the results that we need. If after a few trials with the enemas her bowels do not respond we will need to come back and have another surgery called the Malone or ACE done. That is where they would take her appendix and attach it to the belly button making a stint. We would then daily administer an enema through that port as opposed to through the rectum. As you can imagine that is a much better option then giving them rectally everyday especially as she ages. This would then be the solution for the rest of her life. It basically is a way to avoid a colostomy bag and keep her completely clean and in underwear.


We are praying that in the next few weeks we will find that we do not need any meds to regulate her and that the new health colon will just do its job. Jed and I always get nervous as Madison for some reason always seems to make her way into the smallest percentages when we are give the statistics. Please pray with us that all works out so that we do not have to do lots of meds or enemas.


When talking about the surgery with Madison in the weeks before we got here we tried to explain the reason for doing the surgery. The reason was that we did not want her to be on so much medicine and we did not want to have to give her any more enemas. As you can imagine, the thought of having to do any of those things once we are now past the surgery would be very difficult on her as that is "not what she signed up for".


We will pray earnestly and wait and see. Again, we know that nothing that has happened or that is going to happen will take the Lord by surprise. Therefore, we will trust and believe that whatever happens, no matter how hard or difficult to accept, is in His plans for Madison's sweet life.


Still no evidence of the food moving through, if you know what I mean! We will keep you posted!


Nikki

She is eating!!!!

Madison's first bites of food in 10 days!

video


WOOHOO!!! Madison's xray looked good this morning so they are letting her eat. No restrictions. She chose pancakes, scrambled eggs, a pop tart and milk! She is LOVING it! They said that they will be giving her an ex-lax square this afternoon just to make sure that nothing stays in her colon. There is some talk that she may be able to be discharged tomorrow if everything goes perfect. They need to check her on x-ray tomorrow to see how she is moving the food. They still want us here most of next week to make sure that we can perfectly regulate her colon before we go home. Jed and I are able to get into the Ronald McDonald House today. They called and said that they have one very small room with a full size bed. We will check in today at least and use it over night so that we do not have to share the sofa bed. If Madison is released tomorrow we may not all fit in the RMH so we will see what our other options are. If they are willing to let us be on our own until Monday AM we may try to head to Akron to get Olivia and spend the weekend with Ted and Danielle in a HOUSE!! We would then be able to bring Olivia back with us to Cincinnati so that when we get the OK we could leave straight from here to Freeport. If we are not allowed to leave we will take Danielle and Ted up on their offer to keep Olivia (sniffle....) until we leave for Freeport. What a blessing it has been to have her somewhere that we know she is being so well taken care of (spoiled) and loved (spoiled!).