finding joy in the journey

Thursday, July 17, 2008

the road ahead...

Restless Natives...

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

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

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

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

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

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

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

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

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

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

Nikki

She is eating!!!!

Madison's first bites of food in 10 days!

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!).

Wednesday, July 16, 2008

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

Tuesday, July 15, 2008

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