Day 3 & 4 - May 10th and 11th

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!
Nikki

Day Two - May 9th

Thank God that today was a better day for Madison. We received some good and not so good news so it was so great to have another adult with me to help balance out all of the emotions of what is going on. Jed arrived safety last night and was so anxious to go see Maddie. She was thrilled to open her eyes long enough to show him all the bruises, band aids and wristbands! Madison slept really well for the 5 hours that we were at the hotel. She is still really uncomfortable from the test yesterday. She has developed a horrible rash on her booty and has what they are equating to 2nd degree burns all over her bottom from all of the fluids that she is loosing from the enema that are bothering her skin. I think that I changed 25 plus dirty diapers yesterday so you can only imagine what she does when I come after her with wipes or a washcloth to change her.
We were at the hospital at 7am and had to get an xray so that Dr. Levitt could see what had progressed after we left yesterday. At 8 am we had a 1 ½ hour conference with the dr's and the other 7 families that are going through the same program that we are. It was so good and sooooo encouraging to hear him talk so specifically about what kind of chronic problems our kids have and reassure us that they can help 95% of us there! We then met with Dr. Levitt and Lyndsey (who is our nurse for the next week) to go over what they had found from all of the test. We were very impressed with Dr Levitt as this was the first time that we have ever met him. He is an amazing man! After talking with him for a few minutes he pulled out Madison's film from this morning. He said that she has an unbelievably large colon – 4 to 7 times larger than normal. He mentioned that it is almost the as wide as she is...YIKES. He told his partner several times that he was shocked at how large it was. I would not have been alarmed by that if this man was a pediatrician that dealt with all kinds of problems in a day – but coming from a guy who deals with this kind of problem all day long I was surprised at his reaction to it. The x-ray showed that she still has the majority of the contrast fluid inside her colon after 24 hours. He said that the “normal colon” would have released all of that fluid 5 minutes after the test. This confirmed for him that she has an unbelievably slow moving colon. He talked about her past history and then told us that he really feels like she needs to undergo a surgery to remove a large portion of her colon. They feel like her upper colon is normal and healthy and by removing the lower section, pulling down the upper colon and then reattaching it to the rectum she would have a very good chance at reaching bowel control. We were not at all expecting to hear that diagnosis. It has been hard to swallow but we will be talking at length about it here soon. He feels like we should take the next month or so and try to clean out her colon and see what happens. There main concern right now is getting her cleaned out. She is still so distended and is not eating or drinking because there is simply no room in her body. To clean her out we will be administering enemas ourselves tonight and tomorrow (for the nurses that are reading and like details we are giving 500cc plus 1 fleet 1x tonight and then 500cc plus fleet 3xs tomorrow). We just finished the first one and it was HORRIBLE. It took 3 adults to hold her down. She is so sick of having them and as soon as she sees the bag hanging and the tubes she freaks. Please pray for strength for all of us tomorrow as it will be very difficult to get all 3 in successfully.
We know that little Madison is in Gods hands and are so thankful for her little life. It is so hard to not keep in perspective how blessed we are when you are at a hospital like Cincinnati Children's. At every turn there is some one who is so worse off then you. I have hugged Madison more in the last 3 days then in the last year. I hate to take my eyes off of her. She is such a strong girl and we are so thankful that we can all be together in these difficult times.
We will continue to update you as we get more info and results. We would especially appreciate your prayers in regards to the possible surgery right around the corner. I have attached a picture of what the surgery would involve.
Love you all and appreciate more than you will know your support throughout these difficult times.
Nikki
Madison has officially been diagnosed with idiopathic constipation. The following link is Dr. Levitt definition of the diagnosis and the treatment.
http://www.cincinnatichildrens.org/svc/alpha/c/colorectal/idiopathic-constipation2/idiopathic.htm

Day One

Ok...so it is 11PM and I just finished eating dinner and am heading out in 15 minutes to get Jed from the airport.
Today was supposed to be mild, a few test and a contrast enema that the Dr. needed before our appointment tomorrow. We were supposed to be there for about 2 hours. Well it was 10 hours instead. It has been an emotional rollercoaster. Madison did great with the test and the contrast enema was a little difficult, however, she did good ( I guess she has no choice since there were 5 adults holding her down). We were done with the testing and getting ready to go home when Madison started vomiting. No big deal we thought...she did just have 2000 Ccs of fluid injected in her belly.
Long story short since I only have 10 more minutes! After sitting in the bathroom of radiology for 2 hours with continuous vomiting they put her on a gurney and ran down the halls with her saying something about “she is having a fluid transfer”(?) We ended up in the ER department and her color was WHITE and she was totally out of it. It was sooooo scary. I was sobbing totally unsure of what all was happening. 5 hours later and lots of IV fluids and we were on our way. She probably threw up 25 times (including once as they were putting the IV in.) They basically told me that her body could not handle all of the fluids that were added to her body (messes up the electrolights?) and it can start to put some of your systems in shock. It is interesting because something like this happened last August when she was in the hospital in Freeport – we thought that it was a coincidence but after today I guess that we know it was not. We will have to see what we can do in the future to make sure we avoid these scary situations! The radiologist said that this has never happened to her in her practice of doing enemas.

Maddie is sound asleep and totally exhausted. We need to be back at the hospital by 7am to have an xray to see what her belly looks like after all the trauma today. We will then meet with Dr. Levitt for the first time ever. I am so anxious as to what he will say. The radiologist did say that she has “a huge colon, which Dr. Levitt will talk to you more about” The tests did show that she is completely impacted almost all the way to her stomach. Not good at all. Some did move today after the tests but she still looks about 6 months pregnant.
I am exhausted and will be ready to get answers and the agenda from Dr. Levitt tomorrow. We really do not know what the plans are until he decides on the severity of her case.
I know that many of you do not know anything about what her condition is. I will try to add more details in the next few days but in a nutshell:
Her colon is not capable of moving stool at all. She is almost 6 and in diapers because she has to be on medicines that loosen her stool so that it can not “hang out” in her megacolon. She has lost all sensation of knowing when to even go to the toilet because of so many years of overstretched bowels. A web address that you can click on for the Cincinnati clinic that shows a power point on this condition is :
http://seraph.cchmc.org/mediasiteex/viewer/Viewers/Viewer240TR.aspx?mode=Default&layoutPrefix=LayoutTopRight&layoutOffset=Skins/Clean&width=800&height=631&peid=43791c8b-1c9c-45df-b435-fa19b2881141&pid=4e4aa0e2-2ff3-40fa-aa56-b2dc2b1fa150&pvid=504&mode=Default&shouldResize=false&playerType=WM7&pid=4e4aa0e2-2ff3-40fa-aa56-b2dc2b1fa150&playerType=WM7
I appreciate all of your prayers and I will do a better job at updating once I have a chance to breath!
Love to all,
Nikki
and by the way... ask Danielle about the near death of my youngest! It involves an outlet and a metal barrette!! She is getting better training for her baby to be than she knew was possible!!