Saturday and Sunday were very rough on all of us...especially Madison. The enemas were torturous and not at all a walk in the park to administer. Madison is strong and it took 3 adults to do the first one on Saturday and then Jed and I were able to do the 3 yesterday without help. We were not getting any results and her tummy was getting rock hard since she was holding all of the fluids in. The Dr. changed the mixture to be a little more irritating for the last two and that seemed to work on her stubborn colon. We did not have to do any enemas today. We went in for an x ray at 4 and it showed that she was empty! The Dr said that it is probably the cleanest that she has been in 3 plus years. She was a different person! She was asking for food and drinks and just looked healthier! They said that we could start tonight with the laxative trial. Tonight she got 4 x-lax squares and a tbl of pectin. The pectin is what is used for canning! Its purpose is to keep the stool soft but also give it some bulk. The 4 x-lax squares are to encourage her colon to contract. We will have another x-ray in the morning to see what everything looks like. Our nurse will contact us by evening to let us know what we need to adjust. If she has not had a BM by tomorrow at 5 she will have to have another enema and then the new higher amount of laxative. The goal is to get her to completely empty her colon every 24 hours. The Dr.s prediction is that it will take up to 6 squares a day of the x-lax to completely empty her colon. That is why he feels like it will require surgery for her to have a good quality of life. Dr. Levvitt is confident that her colon will never be able to move stool on its own so once we find the amount of laxative needed to empty her that will have to continue for life. As she grows there is a good chance that it will take even larger dosages for the same results. The amount that she is requiring will cause severe cramping and nausea which would be a miserable way to live! We will see what the next few days brings.
For today we will rejoice with Madison as she said “ this is one of the best days ever”! She was SOOOOO excited when Dr. Levitt said we could go home and not do any enemas! As we were leaving the radiology department she said “ I am so lucky that they do not know about IV's”! It breaks my heart that at such a young age she knows so much about all of this medical stuff! Please pray that the cramping and nausea is not to bad the next few days. Dr. Levitt said that we should be prepared to be woken up in the middle of the night with her in pain. We are praying that it is not so and that she can sleep well!!
thanks for all of your prayers for our sweetie! We will keep you posted as things progress!
Much love to you all!