Wednesday, July 9, 2008

Farewell Megacolon, Farewell !!

Finally was able to get the pic of the colon that was so impressive on the computer to share with you all. This is the contrast enema that was done here at Cincinnati Children's Hospital when we first visited. It is the first picture that made Jed and I have the "ahh ha moment" as to why this sweet little girl has so many issues. The lower part that is all lit up is what will be removed. Dr. Levitt said that it is probably 70% of the width of her body when impacted.

I asked the Dr.s if I can see her colon when it is out and they agreed to take pics of it for me....may seem crazy but I would love to see this "thing" that has caused my child so much agony!

Lights out... its gonna be a big day tomorrow!

Pray on friends, pray on!

no enema, no nose tube and no more silence!!!

Diana, Maddie & Liz!!!! -
Gifts, no nose tube and news of no enema!!!
We all were smiling BIG!!!
Notice the stethoscope around Madison's neck!!
Liz & Diana got her all hocked up to play Dr at home with Olivia and the dolls! _ stethoscope, tape, wraps, blood pressure cuff...the whole nine yards! They can also have the enema kit since it WILL NOT BE NEEDED!!!

YEAH!!!! What a great evening! The nurses that we had yesterday that we LOVED where here again tonight! Long story short they worked with the doctors and Madison to come to a place that everyone was happy - no enemas!! Madison is totally empty and doing great as far as that goes! All of the nausea seems to be gone since they have lowered the amount of Gi fluids. At 8 PM they pulled her nose tube when the Dr. gave the ok on her belly being cleared. 5 minutes after the tube was out she was back to her talkative self! We asked why she had not been talking and she said it was because her throat hurt. No joke - she probably only said 15 words ALL DAY! she would just point and out of character of anything she has ever done in these situations. Once the tube was out and she was not in pain she has been great!

Dr. Levitt was by and he said that we will be heading down at 7 am. We will do our best to keep this updated so that you all can know what s going on.

Maddie gave the nurses a gift(arbonne of course!). She was so excited to give it to them! We will be moving to a different unit tomorrow after surgery. A bummer since we absolutely loved these gals!

keep praying....................

love to all,


better morning followed by rough afernoon

Maddie slept pretty well. Jed set his alarm for every hour so that he could check on her...bless his heart! He was afraid he would sleep through her needing him! I am sure that he will need to grab a nap back at the hotel this afternoon. Madison was feeling pretty good this morning. It so funny because she has taken this vow to silence. She WILL NOT talk to anyone... not even us! I am not sure if she is just mad or if that is her coping mechanism?! We will let her do whatever she want though! She played for awhile in the child life room - pool and a little craft. When we got back to the room she started getting sick again. It is interesting that she had just reached the level of meds that she was at when she started getting sick yesterday. They have decided that she will have to have another enema since she has not gone potty since 10 this morning and her tummy is quite distended..... The poor girl never gets a break. She is finally sleeping now so I have demanded that they not wake her to give the enema... I will let them know when she wakes up. It is so frustrating..... I just wish for one day that things would work in her favor.

Just signed the surgery consent...They will take her at 7 and surgery will began at 8 to 8:30. They are estimating 3-5 hours depending on how much of the colon they have to remove. They are hoping to do all of the incisions through the rectum which would allow for allot less scaring and a less painful recovery... they will not know if that is possible until they get started! We are hoping that is the case. The Dr. confirmed that there will be NOTHING going in her mouth for 7-10 days after the food, water, or ice - total colon rest! All her nutrition will be given through her PICC line. Pray that she is not miserable. We have been told that she will not feel hungry but that the mental agony is what gets you!
We will keep you posted! Love you all!