getting rid of stuff.....

oh to have the imagination of a child!

We have been busy (in a isolated way) since being home. I came home with a new sense of urgency to GET RID of STUFF. I think that being away for 3 weeks and living just fine on what was in our little suitcases, well maybe medium sized (!), made me realize that all the extra is not necessary! So we came home and I began tackling! What else is a girl to do when her child is in isolation and she can not leave her house?? I have started stacking the garage full of things that I have been holding onto for years! I am purging every closet, cabinet and drawer. I am having way to much fun getting rid of lots! I am so compelled to live simply.

You know a big part of it comes from that ah-ha moment when you really, I mean really, get what is most important in life. I am embarrassed to say that it took me 30 years to finally get there. As the days ticked by in the hospital I thought less and less about what was left behind. You just get in a zone where nothing matters but trying to keep those you love the most together and happy. Everything else just becomes noise if you will. You could have told me in the midst of that stay that if I did not return immediately my house would be gone along with everything in it and I would not have thought about leaving. I would not have packed up and left Madison to "save" our belongings...because nothing here has lasting value to me. ( mom I would have called you to get the scrapbooks!!) So then when I returned and there was GOBS of stuff and it almost frustrated me. I start thinking about all that I want to be able to do to help others, specifically Cincinnati Children's and I feel guilty that I have so much. So we are minimizing and man does it feel good!

I will have to take some picture! You will all be so impressed with the emptiness in the closets! I still have a LONG way to go but everyday I am doing one thing to move me in the right direction! I may need to take stock in Tupperware, I am loving stackable bins and organization...maybe they would donate a portion of all of my purchases to CCH!!!!

As for Sweet Maddie Grace... since that is probably why you stopped by! She is doing good. Her bottom is getting a little better everyday! I have been emailing with Dr. Levitt and am encouraged as he tells us not to be discouraged by all of the accidents. He said because of the "extreme bowel prep" that they did before surgery and what was done during surgery that her colon and has been traumatized.... I could have told you that from seeing the pictures! He says that he really believes that she will get that sensation back in the next few weeks. We are praying that is exactly what happens!!!! We have added the pectin back in which totally bummed her out as that is a nasty tasting one that we mix with yogurt. I am thinking that the reason for that is to bulk up the stool to give her a better chance to feel the need to go potty. We will see how that goes! She finishes her anti biotic for the c-diff tomorrow and then will be retested in a week to make sure that she is free and clear!

Thank you so much to all of you who continue to show us so much support! We so appreciate it!

Nikki

magic butt cream....

Here it is... This is the "medical name" for the new prescription that we picked up today! The girls think that it is so funny!! They just keep giggling and laughing! I am not sure if it is Dr. Levitt's secret formula or what... the pharmacy called and said they had to order some dry ingredients to mix us a special cream that was called in!?

We will see how it works!!! Fingers are crossed!

Bad news and good news:
Bad news first....
Booty rash is still flaring its ugly face.... she is miserable. Had to call Cincinnati today to get some different medicine as it is getting so bad that she can hardly function. She does not want to sit or walk and cries about how bad it hurts all day. Every diaper change is a fight. We have resorted to a bath after every dirty diaper....she has had about 20 baths in 48 hours! Today she started to scream when the water would hit the sores.... I am not sure what else to do.
The nurse in Cincinnati said that because her colon is moving faster now as there is less “road to travel” the body does not get rid of enough of a bio-salt ( I am not sure that is the correct name...some sort of salt though.) The salt reeks havoc on the booty..... and the cycle begins.
So in a nut shell the bad news is that Madison HAS a real pain in her butt!
Good news....
Because Madison is so miserable I am trying to “catch” as many poops on the potty as possible to avoid having it in her diaper. I have had her sit on the pot 3 different times for about 5 minutes today. Each time she pooped!!! I am still not sure that she is feeling it. But as long I can get her to sit and she can relax we are having luck, at least for today! We will consider this a step in the right direction. We all needed a little encouragement.
Last night was hard. I have not seen Jed cry since they wheeled Maddie away for surgery, until last night. Madison had a breakdown about how its all not fair...Jed was telling me that she had said that she is the only one in her family that gets sick, the only one in her family that wears diapers and then he began to get choked up as he said that she said... 5 years old are not supposed to wear diapers dad. So there we sat in the dark on the deck crying..... I guess those times will come on occasion. We are thankful for the small victories today. Thank you Lord for giving us a glimpse of hope in a time that it was desperately needed.

starfield.....

Madison went with Jed a little less then a year ago to her first concert! Starfield was playing at Park Hills church. Madison LOVED it. I will go as far as to say that she had her first crush. She came home with an autographed picture of all of the band. I had to have it laminated because it went everywhere with us! A few days after the concert she came into my room early in the morning. I was sound asleep. She woke me up and said “ mom how do you spell marry me?” I looked over and I saw that she had copied one of the guys names and was writing him a letter. She has good taste, he was the cutest one! I asked what she was doing as she ran off giggling!
You can only imagine the excitement when she saw this years summerwood schedule and there was Starfield!!! We marked all of the calendars in the house and COMMITTED to be there. Then we learned about her surgery..... several times she told doctors that she had to be home for the concert. We started to get worried towards the end of the stay that we would not make it back.
We got home with 48 hours to spare! The Smith family was at the concert. Madison was in heaven... She listened and sang! She smiled for 2 hours straight! Olivia was not so entertained.... at one point she looked at me and yelled, literally, as it was soooo loud in there, “do you want to play I spy with my little eye?”. I laughed and told here we would have to wait until after the music stopped.
When the concert was over we made a b-line for the merchandise table. Madison asked for the poster and I convinced her that she needed the whole set...cd, t-shirt and poster! Give me a break.... you would do the same thing if your child just went through all that she has....
We waited in line for the autographs and she was so excited.... she was bouncing all over the place. When we got up to the table they asked if she liked the concert. She replied with a very quick YES! When they asked what her name was she responded with a little bit of annoyance in her voice .... “Madison, but you already know me from the first concert”.! I died... they looked at me for a little back up. I quickly said.... yeah at park Hills in Freeport last year. To that they responded, O yeah...how are you Madison!!!!
Jed and I died! As we were walking to the car she said “ I need to add them to my birthday party list. I want them to sing at my party”. I told her that we would get daddy right on that!!!

where did it go????

I have to share this funny story that happened while we were at the RMH. Madison was discharged a week ago today. We were instructed that she needed to be given her Flagyl for the c-diff every 6 hours no matter when it falls. You can imagine her enthusiasm when we would wake her up in the middle of the night to stick a syringe in her mouth. On Monday it was hot and stormy. We all crawled into the same full size bed because we were so excited to be together! As Jed and Maddie faded off into a deep sleep I listened to the nasty storm brewing outside. The deeper they slept the more the storm flared its anger.... I was a little annoyed to because I could not sleep. At about 1AM the power went off.....pitch black but more importantly ....NO FAN. Now I was really annoyed. Jed and Maddie were not bothered a bit. I laid in bed listening to all the kids in the hallways crying, parents trying to help kids calm down. After 3 hours of this Jed's cell phone alarm clock went off. The only person that budged was me.... I used the cell phone light to stumble to the refrigerator and get out the meds... I filled the syringe as best as I could tell to 5.6 mil and began to try and “administer” the drugs. Madison began kicking and screaming so I just laid across her arms and legs and shot it in her mouth. We had done this the few nights before and she never remembered in the morning. I hated being so mean but found slight peace in knowing that she would not remember. She rolled over and went right back to bed.
The next morning we all woke up to get ready to head to the hospital by 7 AM. After a few minutes of being awake Madison made a large gasp... I went right to her and could see the confusion in her eyes. She looked at me with her tongue sticking straight through a gapping hole in her mouth.... “where did my tooth go?”. I was in shock.....last night it was there. We had mentioned that it was getting loose. I looked through the bed, no tooth. On the floor, no tooth...... Then I looked on the counter and all of the pieces came together. A bloody syringe lay on the counter. Crime solved: aggressive mother knocks child's tooth out while administering drugs in the middle of a power outage...... I was in shock!
Later that morning we were sitting in Dr. Levitt office. I jokingly asked if he could see a missing tooth in her belly. He pulled out the x-ray and there it was....plain as day! So the following pictures are of the tooth INSIDE Madison as well as the note that Dr. Levitt wrote for the tooth fairy!

how do you say thank you enough...

I am so thankful for all of the dear family and friends that the Lord has blessed us with.
Here are just a few ways that you have all blessed our family.
*My mom and friend that spot cleaned our house
*The family that loaded our house with groceries and had a breakfast casserole waiting
*The dear woman that brought a dinner, waiting in the fridge last night with gifts for the kids and a basket of snacks
*The many many that have sent cards and gifts to the hospital for Madison and Jed and I
*Those that felt led to give us cash to help offset the costs that are coming our way
*The flowers that were given and placed in every single room of our house waiting our arrival
*The yard that was mowed
*The “dog sitters”!
* The plant waterer's
*The sister that became a 2nd mom for weeks on end to our sweet Olivia
*The relatives that travel hours out of their way to support us during surgery
*The surprise visits from pastors and friends
*The calls to encourage us during our stay
*The support through comments on the blog
*And all of the others that I am forgetting......
Thank you, Thank you from the bottom of my heart!!

We are back!!!

Our sweet girl!

Home Sweet Home!!
It is so good to be in our normal environment again! We had a good trip home yesterday. It is a long drive from Danielle and Ted's house but we did it!! We made allot of stops.... Olivia drank a few to many juice boxes and Madison's meds kicked into high gear!

We are thrilled that Madison is having some success with emptying her bowels. She claims that she is not having any sensation at all which is still a little disappointing. We had some blow outs yesterday and it is hard to believe that one would “not feel that”. We totally believe her though as that has been the case in the past. We will give it time and see if we progress in the right direction.

Madison is such a trooper.... It has been hard the last few days when she has made different comments about “her condition”. Yesterday morning I had laid both of the girls clothes out on the couch for them to get dressed. Madison looked at the pile and got teary and said... “It is not fair that Olivia has undies and I have a diaper, you told me that my surgery would fix me.” The only response that I could think of quickly was (sorry to all you men that are reading!) “you know mommy wore diapers too after I was in the hospital when you were born. Most people who go to the hospital have to wear diapers for a little while until they get better” She gave me a funny look and then said “ its not fair!”. So today she is in big girl undies.... she asked if she could try and I did not have the heart to say no. What is a little extra laundry right! The other thing that has been difficult is all of the meds that she is still on. The Flagyl for the C-diff, which taste NASTY and the daily ex-lax. I was giving her the meds yesterday and she again said “ you told me the surgery would make me not need medicine” It has been hard to know what to say... You know before the surgery we were trying to help her understand it all. What do you say to your five year old that through tears before getting an enema says “ why did God make me different?” GULP. I called my mom sobbing..... How do you even answer that? A sweet little girl that would come home from school and cry because “the teacher uses gloves when she changed me, will she get sick from changing me?” You do your best to explain... on a level that makes sense. And then you get to the place that we are now. Broken promises. I have tried to explain that sometimes things get worse before they get better. That Dr. Levitt still believes that she will be totally “normal”, to one degree or another in the months to come. But I can not make promises anymore. So for now we say... “Isn't it great that you only take one ex-lax instead of 5, or lets wear the big girl undies and see how we do. “ We are focusing on the small victories and trying to help her understand that all of this suffering that she has experienced is leading to the place that she hopes to be, in big girl undies and with no meds. And then I pray, asking, maybe even begging God to please make that all true! Please God make her feel “normal”.

She is resilient and her attitude so sweet. Last night she was miserable when I was trying to change her. The girl has a burn so fierce on her booty that it kills to change her. So we were upstairs, tears where flowing and I was trying to tell her that it would not hurt!!?? ( that probably falls under the broken promises category... I am still learning!) She looked at me and said “ you do not know what my body feels like”........... Ok, so you got me there. She finally allowed me to clean her up. Don and Jody Sullins had snuck in and were in the kitchen making a breakfast casserole for us. Madison really wanted to see them. We finished upstairs, I held her as she whimpered. We came down stairs and through the tear stained face she glowed! She told of pranks that she played on me in the hospital, funny tooth stories, bad memories and she just lite up! That sweet child has the strength of a champion!

She will make it, we all will – no matter what road we have to take to get to the final destination.
So today we will just reconnect with life... life as we once knew it 25 days ago! We are all in pj's. The girls are making a fort out of boxes in the living room. Jed is putting out fires in his office... making calls and returning emails. I am cherishing my time at the window seat, drinking coffee and reflecting on the last chapter of our lives. I need to journey next. Put some of the raw emotion on paper so that one day I can look back and see how God put all of the pieces together.

A pastor once told me the following story in another very difficult season of life after having our miscarriage. He asked me to think about my life as a beautiful cross stitch in the making, reminding me that I can only see the “project” from an earthly perspective. A view that is looking up on the underneath of the final masterpiece. You know what the bottom of a cross stitch looks like, especially if I am the artist... underneath there are loose strings, knots and sometimes awful messes..... But God is looking on the final piece from the top, where the beauty is, where the messy bottom creates a beautiful finished project. I will not see the “topside” until eternity when I can see my whole life, all of the pieces together. I know that is true for Madison too. One day she will see the masterpiece and will understand why all of these loose strings and knots happened. How it shaped her into the final masterpiece that God intended.

You know I have so much to be thankful for. I am most thankful for the day to day craziness that happens in all homes with kids! I have started doing dishes, cleaning up toys, laundry and breaking up fights(!) after several weeks of not doing so. It at times seems like a pain, but for now, I will consider it a blessing. I have 2 kids that are here with me, an amazing husband, great friends and a beautiful home. I will hold on to this and be thankful for life just the way that it is. I know that the outcome could be different. The Lord protected Madison time and time again. The more I read about her infection the more thankful I am that she is ok. It is a serious matter and many times the outcome can be grim..... I am thankful.

Tuesday morning as I was checking out at the Ronald McDonald House their phone rang. It was a social worker from the hospital. She was calling to ask them to take a certain family off of the waiting list for housing. I heard the woman in front of me say that she was sorry. When she hung up the phone she turned a few pages in her binder and wrote across the top of a page “ social worker called to remove name from the list. Child died last night 7/21/09.” We looked at each other, not sure what to say. She just whispered...”this is the hardest part about this job”. I paid my money and cried the whole way to the car. Never, ever will I forget that there are people that would trade places with me in a nanosecond. Why did it not go the way that it is supposed to for that dear family. They left with an empty car seat, with empty arms and worse yet hearts that must hurt....physically ache from being so empty. Thank you God for giving us a different outcome.

Updates....

The hospital that we love....
The Doctor we adore!
getting a ticket out of here!
Thanks Ronald McDonald House!!!

crashed at Ted and Danielle's....trying to recover!

Ok.... After blogging several times a day I feel like I am behind! Here is what has happened:

left the hospital last night and took Maddie out for a fun dinner at Max & Ermas. She had a good time but has really no appetite. Maybe ate a quarter of a grilled cheese.... hopefully that will get better as she starts to feel more like herself. Got back to the RMH and let her play in the garden and play yard. It is absolutely beautiful. On of the local landscapers in Cincinnati takes care of it for the house. probably one of the most relaxing play yards i have even been in! What a great break for all of us!

Went to bed at 9! We were all exhausted! Took about a minute before I heard 2 others snoring!! Had a HUGE storm come through and the power went off for 4 hours! I was restless but thankful that Maddie and Jed both slept well.

Got up early this morning so that we could be at the hospital at 7 to get Madison's x-ray before the appointment with Levitt. Had a really good meeting with Dr. Levitt. What an amazing man! He gave us the run down on what is ahead. Said that her xray looked really good. We were kinda surprised as she does not seem to be going as much as we had expected.....suppose that it could just be that she is not eating a ton. Dr. Levitt said that he would like to see her taking no more than half a square of the ex-lax by the end of the month. We were thrilled to hear that. Talked at length about the C Diff. He said that the common denominator in the patients that get it is a slow moving colon.... obviously Mads fits in that category. It is still contagious so we will need to take allot of precautions so that it does not get passed around. they gave us some good tips, so we will take all of those very seriously. We have been instructed that if she begins vomiting or has a fever over 100.5 that she needs to go right to the hospital. We have been informed just how serious this infection is and that the consequences of not keeping it under control can be very extreme. In cases that it can not be controlled, the infected colon is removed. PLEASE pray that these anti-biotic work!!

We arrived at Danielle and Teds this afternoon about 3. We surprised Olivia! She was sooooo excited! Madison has been sleeping for about an hour and will hopefully get caught up a little. She feels warm so we are keeping close tabs on her temp. she is holding right at 99 but is sweating like a pickle..... not sure what that is all about. I am sure that i am a little jumpy after being given all of the risks.

Madison and I will be back in 3 weeks for an exam with Dr. Levitt. That will hopefully be the end of the road for her. Dr. Levitt was so sweet today and said that he was sad that our journey with him was coming to an end. We have really bonded. I am sure that he can see the gratitude that we feel for him and how he has changed our lives. I wish that we could pack him up and bring him with us. I gave him a big hug and thanked him again as we were leaving.... I was looking for the word to express my appreciation for what he has done for us. What do you say to a man that has changed the quality of your child's life forever???? I felt the tears coming so I did not say much....

We plan on crashing her tonight and tomorrow just to make sure that everything is ok with Mads before heading home on Thursday.

Please continue to pray for Madison's full recovery. Her biggest pain right now is related to and awful rash/burn on her bottom from the anti-biotic. We just picked up her prescription for that...hopefully she will get some quick relief.

thank you all for the support these last few weeks..... It has been such a blessing! We will continue to update the blog as we settle back into life at home and get Madison back to full swing!

Nikki

heading to the RMH TOGETHER!

Just talked with Dr. Pena. We have been released from the hospital. We will see Dr. Levitt tomorrow AM at 8 and have another x-ray. They have put her on the oral form of flagyl and she will continue that for 14 days. We also have been put on 1.5 squares of ex-lax because she has not had a BM since Saturday.

We will see how it all goes tomorrow and go from there. We are very anxious to get out of here! It has been 3 weeks since we left home. Hopefully we will get the "all clear" tomorrow and can head on our journey home. We miss Olivia like crazy and can not wait to get her!

We will try to keep you posted as things change. We are not sure what the internet connection is at RMH.

Thank you soooooo much for all of your prayers these last few weeks. They have been extremely difficult. It is good to be on this side if the mountain! Hopefully the days ahead will be easy!

love you all!

Nikki

talked with Dr Pena

Passing time playing "smack the balloon"!!

"I don't want to eat and I don't want you to take my picture"

Talked with Dr. Pena. He said that he is going to be very cautious with her as c-diff is a "very serious and dangerous" bacteria. His concern with her is that she is emptying her colon completely so that the bacteria is being eliminated. That is trickier for us then others as we are not yet sure what it will take to have her empty. They are letting her eat and she is actually hungry and has had 3 meals today. She is not real interested in drinking so they turned off her IV to see if that would encourage her. We will take an xray in the morning to see what it looks like inside.



Jed has as we would say at home "ants in his pants". i sent him away to the movie theater to see the new batman movie. I could tell that he was going crazy! Hopefully that will get it out of his system and he will come back tomorrow minus the ADD!!



Mads and I are going to have a pajama party. The new High School Music talent show starts tonight so we will snuggle in together and watch that.



It has been good to have so much quality time with her....one of the few perks in all of this!



We will let you know what x-ray shows tomorrow!

Nikki

not a whole lot of new news...

Thankful today for my beautiful family!

So here we sit waiting for answers and trying to keep Madison entertained. They allowed Madison to eat this morning. She had a bowl of cereal. She seems to be doing well. They took an x-ray about and hour ago so we are waiting to hear how that looks. I am not sure if we will see a doctor today since it is Sunday. I am thankful that Dr. Levitt returns tomorrow. The resident told us that she has been emailing him to keep him current on her conditions so that is good.

I need to stop reading about c-diff. The internet is a blessing, however, sometimes it gets you all anxious. I am thankful that we were able to spot this bacteria early on as it looks like it can be extremely serious. Hopefully they have it under control with the new anti-biotic and that she is on her way to recovery. I had heard today that they will re-culture and make sure that it is under control before releasing her. If that is true we still have several days here at the Cincinnati Children's Resort! (another nurse just told me that it could definitely be another week or so.... UUUGGGHHH)

I received the sweetest email from my cousin Sonya today. I am so impressed with her unbelievable maturity. Sonya is going to be a Sophomore at the UW this fall. These are the words that she wrote: (hope you do not mind that I shared Sonya... it was just so great and made me cry!)

"I was at a Beth Moore conference in Minneapolis this weekend with my mom and some ladies from our church. I don't know how familiar you are with Beth Moore, but she writes some amazing bible studies and books geared towards women. So needless to say it was an incredible weekend.

Her main focus of the weekend was "Life between a Rock and a Hard Place". Over and over, I couldn't help but think of you guys and the struggles you are enduring. One of the main sections we kept coming back to was Hebrews 12: 5-13. I specifically thought that these verses might give you some encouragement.

Hebrews 12: 11-13 "No discipline seems pleasant at the time, but painful. Later on, however, it produces a harvest of righteousness and peace for those who have been trained by it.Therefore, strengthen your feeble arms and weak knees.Make level paths for your feet,so that the lame may not be disabled, but rather healed."

I just thought that was powerful to be able to have hope and look forward to the "Later On", the other side of this mountain. The point where a harvest of righteousness and peace awaits your amazing family!"

It was so encouraging to read her email this morning. I slept at the RMH last night and woke up this morning with a lot on my mind. I think that God has really been "strengthening my feeble arms and weak knees" these last months. I have been very humbled these last few weeks in particularly. How is it that we get so caught up in things that are not important. I remember feeling this way several times after a missions trip overseas. You come back though and you some how go..."but that is there, we live in America". So I think what has really affected me this time is being here in America and seeing all the hurt. Being made aware of all that I have even in the roughest season of my life.

I have seen woman so rail thin, unable to eat because of the dispare that they are feeling by having a child that may not ever go home again. And I agonize over being 20 pounds overweight.... To be so caught up in how "bad" your child is and then walk into the RMH and see a child that will never eat, talk or walk again. To hear conversations of heart transplants, cancer and death. How can you ask why? We have struggles, no doubt- but, man o man could it be worse. To look out your window and see some of the roughest neighborhoods probably in the country, people with no hope and addictions that paralyze them. To walk through the business sections of the hospital and see signs for "financial counseling". To know that there are parents who had to chose between losing a job, or staying with their child. People with out insurance that will lose everything they had, on top of having a child that is sick.

So we will move on. Thankful at every turn, even when headed in directions that we would rather not go, because we are blessed. Confident that God is getting ready to produce a harvest of righteousness and peace for our family. And you know... I am thankful for the journey, no matter how painful. I have learned lessons that never would have been learned in the comfort of my home with healthy children.

Be careful dear friends when you pray for God to teach you patience and humility. Sometimes we only can learn when placed in the fire.

here is what we have.... c-dif

so...we remain in isolation!!


Clostridium difficile
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Clostridium difficile

C. difficile colonies on a blood agar plate.
Scientific classification
Kingdom:
Bacteria
Phylum:
Firmicutes
Class:
Clostridia
Order:
Clostridiales
Family:
Clostridiaceae
Genus:
Clostridium
Species:
C. difficile
Binomial name
Clostridium difficileHall & O'Toole, 1935
Clostridium difficile (pronounced /klɒsˈtrɪdiəm dɪˈfɪsɪli/, also known as CDF/cdf', or 'C. diff') is a species of bacteria of the genus Clostridium which are Gram-positive, anaerobic, spore-forming rods (bacillus).[1] C. difficile is the most significant cause of pseudomembranous colitis,[2] a severe infection of the colon, often after normal gut flora is eradicated by the use of antibiotics. Treatment is performed by stopping any antibiotics and commencing specific anticlostridial antibiotics, e.g. metronidazole.

some answers....

Just saw Dr. Pena. One of the test did come back and it was positive for the bacteria. We will continue to do the intravenous antibiotics and take it very slow. She will get another x-ray in the morning. She did get a low grade fever again today. Interestingly enough it was about half hour after she had something in her system (sprite) for the first time in 24 hours. It will be very interesting to see how things go as we start to introduce foods back in at some point.

Jed is at the RMH doing a little bit of laundry and resting. He is going stir crazy here. It is much harder since we can not leave the room. The days went much faster before when we could wonder around and use the playroom.

If Maddie stays the same the rest of the evening I am going to head over and sleep at the RMH tonight. We will give you info as we receive it.

todays update...

Mads had a good night sleep last night. Slept from about 9 until 6. Had an xray done this morning and they say that it looks pretty good. some gas still in there. Dr. Pena said that he does not want to start food again yet. Today she will do clear liquids and see how that goes. They expect the stool sample results tonight or tomorrow morning. The resident said that what they are looking for is a bacteria that is a result of the antibiotics that she was on after surgery. Something about your good flora being messed up.

We are assuming that we will be staying at this fine home away from home several more days. If there is no food today then hopefully that will happen tomorrow. I am confident that they will not let her go within 24 hours of eating as they will want to make sure that everything is working. The resident said as she left " see you on Monday". I almost cried!!! Do you think that 5/3rd bank will give us a reduced mortgage this month since we have not been home???!!! The days go much slower with the isolation because we can not go to the playroom or do anything fun. Child life has been good about bringing crafts and games to the room. Trying to keep all of us from going stir crazy!

Madison seems pretty comfortable. She is still not interested in drinking anything. I am wondering if she is fearful that she will get sick. She has only complained about belly pain a few times today. We will keep you posted as we get any new info.

Thanks for the prayers,
nikki

not much news....

All that we have heard back is that her blood showed an elevated white blood count. Something they would expect with a viral infection. They are most concerned about what the stool sample shows as that, I believe, would let them know if the infection is in her colon. they said that will take a few days to get back. They started antibiotics this morning as a precaution. She has had nothing to drink or eat all day...totally not interested. Thank God that she was able to just start IV fluids back up. the PICC line has been such a blessing. Not one poke today even with all the blood draws and restarting fluids.

I slept for a few solid hours at the RMH. Funny how you forget what good solid sleep is until you experience it again! I am hoping that will give my body the boost that it needed. Madison fell sound asleep about an hour ago. Hopefully she sleeps through the night and the fever does not come back. We will repeat x-ray in the morning and then determine if they will try her again on food to see how she does.

We have had constant soiling today which is a little of a disappointment. She has said that she has no idea that she is going 5 of the 6 times. I have always just "found it" on routine checks. Maybe it is just because of the laxative they gave yesterday. This would be a hard way to function the next month or so. Dr. Levitt did warn us about this possibility so we will just continue to take it day by day and see where we end up. Maybe now with the antibiotics, sickness, ect. we are not getting an accurate read.

Thanks for your continued prayers.... sorry to keep you on your knees so much! We are anxious to give you all a break! We will keep you updated as we get info.

So thankful that The Lord allowed all of this to happen while still here and in the best care possible.

Trusting that the Lord is taking care of our sweet baby even when we feel we are helpless is what is getting me through. I have been thankful for the overwhelming sense of peace that I have had through this whole stay. maybe all of the other trauma and hospital stays these last years were also to get me to a place that I could be here, hundreds of miles from home, without family and still somehow survive. This blog has been good therapy for me as it has allowed me to voice and share concerns that otherwise would all be welled up inside. Hope that I have not over shared and that you are all ok with all the info and detail that I am blogging.

I told my dad today when he asked how I was doing that I will probably fall apart when we get back home, be prepared.... hibernation may be in order!

I also wanted to add that I can sense the helplessness in the voices of our parents and close friends when we speak. I think if I know my dad like I think I do the thought crossed his mind today to get in the car and drive. Am I right dad? Please know that we ARE OK. We are holding it together. I am not sure how, but we are. We have been blessed by the comments and emials and the OVERWHELMING show of support that you all have offered.

I am most thankful for Jed. He has been so great and so supportive these last few weeks. He is a very compassionate dad and husband and he has been what has gotten me through. I am soooo thankful that his amazing boss, Steve Banas, has been so understanding and has made it possible for Jed to be here and present with me and Madison without guilt. I guarantee that this will make me a more supportive wife when he needs to put in the long and grueling hours in the months to come.

enough babbling... I must be tired.
nikki

tick, tick, tick

just waiting for answers. we did a blood, stool and urine sample. they have moved her to isolation status until we get it all figured out. Talked with Dr. Pena. He is thinking that it could be something with bacteria levels in her colon. They have put her back on a clear liquid diet only again. Her fever is down with the Tylenol. Hopefully it will stay that way. She is sittng in bed painting right now, a huge improvement from earlier.

Please continue to pray. I am exhausted today. I think that the adrenaline is down and the body could not handle one more big turn of events. Mentally I was thinking we were done with the hard stuff. I am heading to the RMH to try and sleep for a few hours.

Dr.s just came back in..

so we are definitely not going home. They are drawing blood and starting the IV back up. The xray looks pretty good. They think that they may need to insert a tube to release some air that seems to be blocked in her sigmoid( the small amount of the bottom part of the colon that is left). Poor girl.... Pray that it is nothing major. The Dr agrees that she feels allot hotter then her temp is showing.

good news, bad news.

Last night we went to bed at about 9. Madison was exhausted and had no problems falling asleep. We had a tiny bit of stool right before bed but nothing to impressive.

At about 2AM Madison woke me up and said that she was hot. I went over to help her get some water and she was burning up and I could feel that her heart was racing. Her heart rate was about 170, but her fever was only 101....she felt much hotter. They did not give her anything because they wanted to make sure that she was not working on spiking a serious fever. She did fall back asleep but was restless all night. Her heart rate stayed pretty high but she never got a higher fever.

At 6AM she woke me up and she was crying that her belly hurt and she needed to go potty. YEAH... what a great sign that she felt the urge to poo!!! I got her on the potty and she had great success but was miserable and crying that her tummy "hurt so bad". We were thinking that maybe she was just experiencing some pain from the "guts" starting back up. She continued to cry about being hot and her tummy until she drifted off to sleep about 8. At 9 they took her for x-ray and I could tell that she was just miserable. She stared throwing up when we got down to radiology and was shaking like a leaf.

She is in bed now....we are waiting for the x-ray results. I am confident that she will be empty. I am just praying that there is no other problem going on internally. They are saying that we will need to start IV fluids again her in the next hour if she does not turn the corner. Obviously she does not want food...... so here we sit..... waiting and hoping. Poor baby, I just want her to be all done with the yuckiness!

I am sooooo thankful that she went potty on her own to day and that she had the sensation. Something that we did not know would even be possible. I think that is a great sign for her recovery in the next few months. We will try to lower laxative dosages as we continue to have success to see if we get the same results with no meds.

On a funny note: Jed stayed at the RMH last night. This morning I called him at about 8 to let him know that it had been a rough night and that she was not feeling well. He said that he would need to call me back because the firemen had just knocked on his door... I could hear commission in the background. Turns out that this morning the neighborhood lost power. I heard the fan in our room stop for a nanosecond before the generator came on so I was not aware of the situation. Jed woke up when the power went off at RMH and decided that he would just take a shower in the dark so that he could get over here. He left the bathroom door open to try and get some light from outside. Well..... the steam from the shower triggered the fire alarms for the whole house. So there he is in the shower, no lights, fire alarm blaring, knocks on the door. The whole house was in a tissy. They said that they think it had more to do with a wiring issue then steam. the were so apologetic. Never a dull moment!

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!

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!).

thank god she is a warrior...

madison picked this in the toy box after winning bingo!

Talked with Dr. Levitt. They have decided to take her off of her TPN & Lipids as she is not really interested in the offer to have clear liquids today. They will pull the "food line" tonight and hope that she will be more interested in jello, juice and water. The x-ray will be repeated in the morning. I got the impression that Dr. Levitt and Pena are both thinking that it will be liquids again tomorrow based on today's x-ray. We will start foods when the x-ray is clear and there is no distention. The plan is that we will stay in the hospital a few days after she starts eating but that he does not want us to leave town until next week - mid to end of the week. It is frustrating as we are stir crazy but Jed and I both agree that leaving before she is ready would be crazy.

Talked a little about what the next few weeks and months will look like for Madison as we try to get to the end of this journey. I will post all of those detail when I have a second. Please continue to pray these next few days as some big milestones will need to happen in order to determine what course we will take from here. I will fill you in on all the details soon.

Pray on for this sweet girl!

Nikki

It's a "no go" on food...

After the traumatizing PICC sterile change last night.

Every time that they access her PICC we all have to wear masks and gloves because the line goes directly to her heart. They said that if just one person coughed over the line as they change it she could get an infection. Crazy to think about.

last night they took all of the tape off and it was no fun. Took 4 of us to hold her down. I think that at this point it is more the fear of the unknown! She was so tired and sweaty after we were done.

This is what teh PICC looks like before they bandage it all up.

The round disc is where the tubing goes through the skin. the disc is full of antibiotics that keep the area totally clean and sterile.

First liquids since last Tuesday!!

Coloring...passing the time. Isn't she a doll!

hello all.... Just wanted to update you all. We had our x-ray at 7 AM this morning. Got the results back from the nurse practitioner that she was a little distended and that they would not allow food yet. Dr. Levitt oked juice and jello today so we can see how that goes. We should see Dr. Levitt anytime and he will be able to give us a better idea of where we stand. There are allot of people that come through and all seem to have just a little different info. I always just wait and get it straight from Dr. Levitt. I will try to see if he can give me a better idea of what his plans will be for her once she starts eating. Will she have to stick around to make sure that we do not have constipation issues still...ect.



Madison seems to be a little less aggravated and frustrated today. She had a good night sleep. Seems to feel rested. We have already played cards, visited the playroom, read books and she is now sitting on the floor(not sure how she does it after seeing the surg pictures!!) coloring in a great activity book from one of her favorite people in the world, Mrs. Jungles. We are jammin to Hannah Montana and as soon as the clock hits 2 she will inform me that the play room is open again!



Today we had a nice meeting with a gal named Maggie. She is a representative for a new group here at the hospital called Champions. It is a group that helps the hospital through sharing their stories. She came and "interviewed" me and Madison on video camera for about an hour. A really sweet lady and a good chance to share just how thankful we are for Cincinnati Children's and especially Dr. Levitt. I always feel my eyes well up with tears when I talk about him. He has impacted our lives in a way unlike anyone else before. How do you ever say thank you for that.



Jed and I have had several conversations since being here about how we can give back to CCH. We have talked about different ideas... how can we specifically help the colorectal center? maybe for now just sharing our story. there seems to be lots of possibilities coming our way with the Kids Wish Network, possible article in the magazine here and now with Champions. It would bless my soul to be able talk to others that are in the same place we were just a few months ago. I was telling Maggie that as hard as the last few years have been, maybe, just maybe, it better prepared us to share with others who are so desperately looking for answers.



Have you ever been so passionate about something or someone that you want to stand and shout with a megaphone. That is what Jed and I feel for this place and Dr. Levitt. I laughed as I thought about all of the other hospital stays we have had. I always am thinking...how much is this one gonna cost us! You know that never once has that crossed my mind here. I would sell my car, stop shopping (OUCH!) whatever it took to be here...and then still want to find ways to do more. Maybe I am just in the thick of all of the emotions right now... We will see. We will look for opportunities to share and help where we can!



Thank you to all who once again sent packages! We received another bundle today! The Elliotts, Schlesselmans, Tessendorfs, and Gma & Gpa Smith. She is busy doing crafts from all of the new goodies as we speak now!



We will keep you posted on the food front as we get more info.

nikki

Another Good Day.

Madison & Malory

Another good day so far! Madison slept great! No interruptions big enough to wake her up. Jed and I did ok too! It was a little tight....good thing we love each other! This would be the worst kind of therapy for a marriage on the rocks!!

Talked to Dr. Levitt. He said that we will do the xray tomorrow and if all looks good he will possibly allow her to drink something tomorrow night. Then start with food on Thursday. We have been trying to get some info as to how long after eatingbefore she will be sent home. We were old today that since she was admitted for constipation they will probably make her stay a few days after eating to make sure that we are not still having issues. UUUGGGHH... only time will tell. We definitely do not want to go before she is ready and have to come back. We will just have to take it a day at a time and see.

Trying to stay a little lower key today then yesterday. She got really nasty last night (attitude)and I think that it was because we just did to much. We will try to space out breaks and activity a little better today and see how that goes. She has been a little aggravated the last little bit and I am not sure if that is just her frustration or her way of "coping" with all that is going on. She had an emotional breakdown this morning because "I want to wear real clothes". The nurse practitioner helped us through that little breakdown! It is hard for her to understand that they really can not disconnect her PICC lines everyday. We did is last night for the first time since she got it last Tues. I attempted to give her a sponge bath and wash her hair...I think she thought that it could be the norm.

Overall she is doing great. She is such a trooper and has more willpower then anyone I know. She announced last night that she just really wants us all to be together all the time and that she would rather we eat in the room with her and not take turns leaving. She informed us that she would just try really hard to not think about how good it smells. I asked if she was sure as we were fine eating in shifts and she said "no, stay here". I looked over while we were eating (backs to her.... we really are not cruel) and she had all of her animals forming a wall so she could not see and then had her blankie bear over her nose. It was so cute! Today when we brought lunch in it did not even phase her! Can you imagine.....she is amazing!

Had a few really fun surprises today. First - as I was heading up to the playroom this morning to meet Jed and Maddie I ran into a traffic jam.... a whole group here to see Madison! My moms cousins Renne Reimer and Nancy Maillefer and Renee's 6 kids and mother-in-law! Renee has a 16 year old boy, 15 year old boy, 13 year old triplet boys and then one sweet little 9 year old girl! I have not seen Renee in years....they live about an hour away. How sweet to have them come stop by!

A few minutes after they left my cell phone rang and it was Charmaine Balmer from Freeport. Their family was in Cincinnati heading to North Carolina for vacation and wanted to stop by. Mark is our pastor in Freeport. Their youngest Malory was in preschool with Madison! Madison was so excited!!! They played together for a long time... The first person that Madison has played with her age in weeks! A funny thing that happened too.... this morning the Reimers gave her a sweet present with Pet Shop items. A house and some fun animals. We have never had pet shop toys before so she was excited to get them out! Malory shows up and hands Madison a present of PET SHOP animals. It was so cute and the timing was so bizarre!

More mail today from Grandpa& Grandma Smith and Aunt Rachel and Uncle Nik. Thanks!! She loves it!

I need to get her up and moving to the playroom before they close... we will take it easy tonight. Jed will have dinner with a friend that is in town on business and stay at the Marriott with him....I am thinking he did not really love the "extreme" closeness in our bungalow last night! Maddie and I will probably have a date on the roof of D2. Just us and some TPN & Lipid cocktails!

I will keep you posted as we get new info!

Nikki

I've Got Mail!

Thanks to all of you that sent goodies in the mail! Today we received quite the stack!

Crafts from the Knudson & Rookes

A letter from Madison's dog Libby! She is showing the picture to everyone!

A letter from Tri-County Christian

Boy is she loved!!! Thanks to all of you for all that you are doing to show us so much kindness!!!

Nikki

What's for dinner??

TPN & LIPIDS!!!!

So what exactly is Maddie getting???? Here it is!

Bon appetit!

Lipids.. this bottle is a whoppin 1000 calories!

Essential fatty acids TPN - Total Parenteral Nutrition
liquid meat and potatoes!

Great day so far

playing outside
looking over the rooftop fence at the view outside!

She said " I have so much good energies since I have been in bed for weeks"!

Playing outside... a little difficult with all the "equipment"
Resting up for BINGO!

Today has been a great day. Madison is feeling really good. We have been given permission to roam free in the hospital. She is having fun roaming the first floor....gift shop, library... you name it she wants to check it out. We found a great outdoor rooftop playground for patients only. We had fun out there, did some coloring and a game of war.



She has been a little more aware of the whole "food' issue today. The best was when we were waiting for the elevators and the door opens and there stands a guy with a huge cafeteria tray of chicken fingers and French fries...can you imagine the look in her eyes? I jumped in front of her trying to block her few and some of the aroma. They then "invite us in" assuring them us that there is plenty of room. I kindly say that we will wait and they again invite us in... I looked at he guy and mouth... she will want to eat your food! He apologizes and the doors close. Madison looks up at us and says " I am really hungry for some chicken"! Jed and I died laughing and she pouted...it only lasted a few minutes! She has decided that she wants her first meal to be pancakes! We will see what we can do! Sounds like a pretty mild food to start with!



We are taking a quick break and then are off to BINGO in the child life room. They say that it is always a full house!



We still have not been able to get into the Ronald McDonald House. We decided today that we would check out of the hotel today and all start bunking here to save money as we were using the hotel so little. We will report in on how it goes.... Madison is pretty excited that we will all be together!



A specific prayer request is that Madison would start passing gas. Her belly is looking pretty distended and it can only be because of gas. If that does not change we will not get the ok to eat on Thursday. We needed her "tooted out" by Wed when we get the xray!



Thanks for your continued prayers, your post of encouragements, email and your mail! Madison, Jed and I are sooooo thankful for our AMAZING support system! We are blessed.

A special lady!

Aunt Miriam

I think that I have been asked maybe 20 times these last few month..."how did you hear of us". I always explain the story.

Do you all know how it happened? For over 3 years we have been looking for answers, answers that we could live with. Not that we were looking for the easy way out, we just needed to feel like there was a light at the end of the tunnel.

For years we had heard remarks such as:
** "she need to see a poop psychologist...it is all in her head"
**"she may just have to be in diapers until she is 12, that's not all that uncommon with kids like this"
** " lets try doubling that medicine one more time and see if that works"
**" go ahead and add 3 TBL of mineral oil a day to her miralax"
** "I guess we can do a colon biopsy if that would put your mind at ease"
**"try 3 enemas today and then follow with enemas every hour until she passes the blockage"
and here is my favorite!!
** "I will get you some gloves and you can try to dis-impact her!" that was from the ER doctor at 2 AM when Maddie was thrashing in pain after not pooing in 14 days, even while taking her meds. I had a few ideas for him, however I am trying to keep this blog family friendly so I will not share!

do I need to continue... for years we have been frustrated, at times even questioning if we were just the worlds worst toilet trainers. Thank god Olivia just woke up one day and decided to poop in the big girl potty. It made us realize just how different sweet Maddie's bowels were.

In January I had just returned from UW in Madison. We had that biopsy done to make "us feel better" as well as several other tests. The test all came back normal and we were told to give more meds and follow up with them in a year...and "make sure that you find a good poop psychologist". For all of you laughing ... they really do exist!

Jed and I had talked ( we had lots of time for that while he was on his back from his Achilles surgery that same month!) and knew that if this set of test came back normal that we had hit a brick wall and had nowhere else to turn. The day that I got that call...the one that said she is normal, lets just help her figure out that it really doesn't have to hurt to poop and all will be ok, I bawled my eyes out. What now? I was afraid. Afraid to up meds, afraid that she would be in special ed classes because she would continue to have explosive blow outs daily ( I am talking explosive....poop in hair and sometimes even full tennis shoes) how will she have sleep overs, swim in pools...the list goes on. I called my dear friend, Aunt Miriam to vent. Miriam was a pediatric gastro nurse for years so I was always running things by her. I could tell that she was unsettled with the diagnosis as well. She assured me that she would do some looking- specifically on the med dosages and get back to me.

Later that night Miriam emailed me a whole list of websites to check out. She had specifically highlighted a site that she thought would interest me of some man in Cincinnati. It was a powerpoint video presentation of Dr. Levitt. I will never forget watching that video as long as I live. Since that night in January I KNEW that Dr. Marc Levitt was our answer. I was not sure how the details would work out, but, I knew that as soon as the clock struck 9 the next morning I would began the process of finding out.

And that is just what happened. Weeks of gathering medical charts, phone conversations, begging to be seen asap and not have wait on long lists. Can you believe that this dear man and his partner are THE ONLY Dr.s in the WORLD running a pediatric Colorectal Clinic.

We have been under the care of Dr. Levitt since May. For the first time in almost 4 years Maddie is interested in food. She has no dark circles under her eyes from nasty toxic build up, she sleeps great, she can button her pants, her belly is not distended, she is full of energy and most importantly....she knows when she has to go potty, she goes, has no accidents and EMPTIES that colon everyday. Even though all of that was done with large doses of meds.... it is the first time it has worked. (Ironically all of the medicines that we have been on for years past are on Levitt's "never use" list! ) We know that there is still lots of work to do but we can see the light at the end of that once O' so dark tunnel.

So..... how do you thank someone that literally has changed the course of your child's life?

Miriam, if it were not for you ....who knows? Thank you from the bottom of my heart for helping me research and ultimately discovering my favorite Dr. in the world! The hours that you spent on your computer that night in January have changed what the future holds for Madison. Love you!

I know that the Lord has orchestrated every day of Madison life and that He hold her future in His hands. I will never take that for granted. I am so thankful...................

Nikki