Day 7 - May 14th

Overall today was a good day! We had our x-ray this morning and then headed to the museum. They have the Bodies Exhibit here and it was fun to take Madison and spend allot of time in the room that talks about digestion. There were some great visuals to help her really understand all that is going on as I can tell that she is somewhat confused about it all!
We had great success this morning with the meds and were pretty sure that she would be clean on x-ray. We also went from 3 accidents yesterday to 1 today. We were surprised as we assumed more laxative means more stool which would be more accidents. They assured us that the laxative is to monitor if the colon is emptying and the pectin is to determine the consistency of the stool. They need to get the laxative high enough that she emptys...Period. We were told to go down to 4.5 squares tonight because she was clean on x-ray and had complained about some cramping. Maybe this will be the magic formula.
She continues to eat like a horse....which is so weird since she is never like this!

Today she ate:

waffle
raisins
yogurt
apple juice
chicken fingers
applause
fiber one bar
chicken breast
4(!) slices fresh whole wheat bread (the good kind at Outback steakhouse!)
wild rice and veggies
and a doughnut! (pictured above!)
She is also asking for water at every turn!

She is probably drinking 2-3 20 oz water bottles a day!

For all of you that are reading this and thinking that there is not enough fiber in there, to much bread...blah, blah blah - do me two favors:
1- try to feed a kid a balanced diet at restaurants three meals day
2 – take 5 x-lax squares and see if you poop!
The doctors have assured us that right now to do our best to get her to eat a balanced diet – but let her eat what she want as meal times so she is full. The most important thing that they are tracking is 3 meals a day with NO snacks. They need the colon to be in the same patterns everyday. That is the only way that they can effectively find the right meds. The no snacking will be interesting at home because Olivia is a human garbage can. We will be investing in some child locks soon!
Other than a new bladder infection she is in great spirits! She is such a trooper and never complains about all that she is going through! She described her bladder pain as “when I am peeing it is like some one is giving me shots, like an IV”..... poor kid. Hopefully the meds will kick in soon. They will have them waiting for us at the hospital in the morning!
Thanks for your continued prayers for all of us!
Nikki

Day 6 - Part 2

Todays Special!
5 squares of ex-lax (at least it taste like chocolate!)

and 1 TBL of pectin

UUUGGGHHH.... Got a call from our nurse at about 4PM. There is stool still in the colon so we have had to up the dosage to 5 squares of ex-lax a day. We will have another x-ray in the morning. She has had several accident today. It does not seem like she is moving as much as she is eating though... we will see how it looks in the morning. For now we will just follow instructions.
Emotionally I had one of my roughest evenings tonight. We tried to stay low key today as Madison has been so exhausted. It was absolutely beautiful out so we decided to take her to a Cincinnati Reds baseball game tonight! All was well, we had gone to the bathroom 2 different times and sat for long periods on the toilet hoping to “catch” a bowel movement. No results either time. About the 5th inning she got restless so we went walking around. We came across a large playground (inside the ball park!) that had a ton of kiddos playing on it. There were probably 20-30 kids and then 3 times that in adults watching. She said that she should play so that she could “get all of her energies out”! We had been watching her play for about 15 minutes when a little girl probably 3 or 4 years old came over to the top of the slide and yelled at her dad “dad it smells like poop in here”. The dad busted into laughter and started telling all the other parents that he was with about it. I immediately panicked. I got Jed who was across the playground (we split up so that we could see her from both sides) we got her down and could tell immediately that she was indeed the culprit. It was all I could do to not cry when I was in the bathroom with her trying to get her cleaned up. It was the first time that I had seen and heard for myself – what she probably deals with more often then I am aware of. I felt so bad because she was standing close to the little girl that yelled that out into a crowd of people. I did not ask her any questions as I am praying that maybe she just did not connect all of the dots. She is 6 though... I know that we are hitting a stage where kids will be mean and notice that she is different. I am anxious because it is Wed tomorrow and it seems like we would need a miracle to get this all figured out by Friday. It seems like she is still clueless as to when she needs to have a bowel movement.
So we will increase the ex-lax and see what happens. Thanks for keeping us in your prayers! It has been a long week so far but we can feel the prayers that are being said on behalf of our family! Olivia is doing great! Danielle and Ted are keeping her so entertained that I am afraid she will be bored stiff when we get home! It has been so great to not worry about her and know that she is doing great! I called today and she was “to busy” to talk to me!! O'well...at least I know that she is having fun!
Off to bed...
Nikki

Day 6 - May 13th

Still waiting to hear from the doctors today. We had the x-ray this morning and we are hoping that it will show good results! Madison has complained a little bit about having tummy aches today. We unfortunately have had 3 accidents since last night. She says that she does not know that she is going, which has always been the case in the past. Dr. Levitt believes that will get better as her body has time to adjust to not being totally impacted all of the time. He said that in the past her rectum and colon were so enlarged that she physically could not feel the urge to go the bathroom.
She continues to eat really well! The picture above is at lunch.... it is her with all of her empty zip-lock bags! Never does she finish all of her food! It has been so cute to see her anticipate the coming meals!
We will let you know after we hear about the results of the x-ray today.
xo,
Nikki

Day 5 - May 12th

Our “pooped” out trooper!

Today was a good day! Madison slept through the night and seemed unfazed by the laxatives!! We got her up at 7 and sat her on the toilet! She had a bowel movement on the toilet for the first time in years!! It was so exciting! She was thrilled. She immediately asked if she could wear big girl undies! We had our x-ray and it looked all clear. We will do the same meds tonight and then have an x-ray in the morning. She is eating allot of food! She actually woke up last night at 10 and came and asked for a snack. It is so unlike her to think about food. Before bed she said I am so excited for breakfast! It is so fun to see her have an interest in food and beverages. Usually she will only eat a few bites and be done! We are worried that she will not pass enough tomorrow morning to be empty after eating so much today. We will see what happens!
We took her to the Creation museum today and she really liked that. She loved all of the dinosaurs! She is missing her sister and is always talking about her! It is very sweet!
We are excited that things are going well.... a little anxious each night about what the next day will bring! Pray that she is able to poo in the morning so that we will not have to give an enema.
Thanks for all of your prayers!
Nikki

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!!