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