Good-Bye Colon

Kylie went back to the operating room about 12:30. I told her about 11:30 about the surgery and I'm thankful I didn't tell her any sooner. She cried and cried. She kept saying,"I'm just so tired of being here", "I''ve been here long enough", "I want to go home". It was just heart-breaking. She kept trying to hide under her blanket from all of the nurses. It was kind of funny, but poor thing--she didn't know how else to respond to everything going on. I really think that the roughest days are behind us...getting the IV in, ng tube, and the clean-out process. She will be sore, but I think that things will look up after today. I forgot to ask how long they expect the surgery to last, but we'll let you know when she is through. Thanks for all of your prayerful support!

Removal of Colon Today

Here's a picture I took of Kylie's very distended tummy before we left home

The no-fun ng tube

A wagon ride down to the lobby

Kylie's doing good on this Monday morning. We've already been out for a wagon ride around the floor upon her request. Surgery has been moved to noon instead of 1-2 in the afternoon, so that's good news. I also failed to mention the other day that Dr. A was able to contact the motility doctor in Ohio regarding her situation. This time, he spoke with Dr. DiLorenzo, the top doc on the motility team, which was great. He sent them her terrible x-ray and Dr. DiLorenzo completely agreed that her colon absolutely does NOT work. He doesn't have answers as to why the motility testing came back normal. However, they both agreed that their only option is to go ahead and remove her colon. Dr. DiLorenzo did say that if this surgery is not effective for her, the problem most likely lies in her pelvic floor. It has to do something with the positioning of the rectum--sorry, I don't completely understand it myself or else I'd give you a better explanation. There is no way to test for this condition in children though it can be done in adults. With this condition, the only treatment would be a life-time ileostomy. Dr. A is very optimistic that her pelvic floor is not going to be the issue. Would you please pray with us that removing her colon would be completely effective?

Sat Evening and Sun Morning

Yesterday seemed much like the first day that we were here almost a year ago. We just happen to be on the same floor and have used the same procedure room as a year ago...not good memories. Yesterday evening was absolutely heartbreaking. On the 7th attempt, they finally got Kylie's IV in. Apparently, the vein kept on blowing. How do you explain the reason for continuous poking and prodding to a four year old. After they finally got the IV in her foot, they put the ng tube down. Every adult that I've ever talked to who has experienced one says that it is awful. Poor little thing. I would have done anything to be in her place. And then following the insertion of the ng, they irrigated the rectal tube. With this hospital stay being her 9th admission this year, you would think that she would be somewhat used to these things. Kaycee and I think it has almost gotten worse and that she fights these procedures more. We were finally out of the treatment room and back to our room by 11:00 last night. She was so utterly exhausted from all of the fighting and crying that she was basically asleep by the time Kaycee carried her back to her bed. All I could do was sit by her bed beside her and cry after all that.

Kaycee stayed with her through the night which went fairly well and I spent the night at my mom's. She slept good until about 4am this morning. When I got up here this morning, she was laying in Kaycee's arms in the chair holding a new toy that they gave her. In the past, she hasn't done much talking with her ng tube in. However, she wanted to show me her new toy. I was surprised to hear her talking about her toy she got for being so brave last night. She's handling her ng tube really well this morning. We praise the Lord for a new day today and for getting Kylie through her first night back here. I am also so thankful for Kaycee's parents who are caring for Carson once again and for my mom, aunt, and sisters who have been up here helping us out. The Lord is so good to provide for our needs.

A dear friend e-mailed us the comforting words of the hymn "Be Still My Soul" this morning~

'Be still, my soul--the Lord is on thy side! Bear patiently the cross of grief or pain;
Leave to thy God to order and provide--
In every change He faithful will remain.
Be still, my soul--thy best, thy heavenly Friend
Thru thorny ways leads to a joyful end.

Be still, my soul--thy God doth undertake
To guide the future as He has the past;
Thy hope, thy confidence let nothing shake--
All now mysterious shall be bright at last.
Be still, my soul--the waves and winds still know His voice
Who ruled them while He dwelt below.

A Rough Afternoon

Well, we are here. It has been a rough afternoon though. After we first arrived, they put in a rectal tube in order to help with her tummy distension. So far, we have had FOUR unsuccessful attempts at an IV. Right now, they are contacting the doctor to see what he wants to do. After they get the IV in, the next thing to tackle will be getting her ng tube in which will need to be in until midnight tomorrow night. I am so dreading the all out fight it will be. It is so hard to have to watch her go through these things. Our prayer is that her Heavenly Father will comfort her through these very unpleasant circumstances.

Admission This Morning

Yesterday was a discouraging day. Kylie had an x-ray and then a visit to Dr. A's office because there hasn't been any progress with the medications that she has been on for a week now. Her x-ray was absolutely terrible--so bad that he needs to admit her. She is at so much risk for another awful c-diff infection. So, we are heading to Children's between 9 and 10 this morning for admission. He gave us until this morning so we could go home and prepare. The plan for now is surgery on Monday at 1:00 to have her colon removed. He has come to the point where he feels there is nothing else we can do. Yesterday afternoon, he was going to put in a call to the motility docs in Ohio, send them her x-ray, and see if they had any other suggestions. These next few days could be very difficult and we would so appreciate your prayers. They plan to put in an ng tube to give Kylie the medicine needed for her clean-out before surgery on Monday. We will be leaving home soon and will keep you posted as to what progresses throughout the day.

Where Are We Headed?

So in the last update, I mentioned that we were waiting for Dr. Abdessalam to contact the motility doctor in Ohio and try to get some answers as to why Kylie's colon was not starting to work following her reconnection surgery. Last Thursday, he called me with what I considered very encouraging news. The motility doc said that it can take up to three months for the colon to kick in and start working after a reconnection surgery and that Kylie should be on a couple of medications to help get things moving. So, upon her recommendation, Dr. Abdessalam started Kylie on two medications--both of which have NOT produced hardly any results since she started them one week ago tomorrow. This just should not be and has us very concerned. I put a call into Dr. A's office today. If there isn't any movement of her bowels by Friday, he wants to see her. We just wonder what in the world is going on in her little body. There still seems to be some sort of motility problem even though all of her test results came back SO incredibly normal. Her poor little tummy is getting so big again. She was so so cranky today and I just think it has to be that she feels so huge and full. She hasn't been eating well either. Poor little girl. I wonder if they will send us back to Ohio? It has been brought up before by Dr. Abdessalam. Oh, I dread the thought of it. How can this be such a mystery?

X-ray and Appointment Today

It seems that this past week has been kind of an emotional roller-coaster. One moment I am thinking that things are going much better and then the next, I am so concerned. Sorry that these updates all revolve around poop--not very pleasant to write about or read about. But in order to help you understand what exactly is going on with her intestine, I feel I have no other option. I was getting really worried last week as Kylie's abdominal distension was increasing, she was not pooping, and not eating well. Then all of a sudden over this past weekend, she started eating super good and began having some bowel movements. I was just so sure that her x-ray this morning had to look improved over last Monday's. However, that was not the case. Kylie's x-ray this morning looked terrible. It showed that her intestine was full of stool and gas. I'm sure that Dr. Abdessalam is ready to throw his hands up and say he doesn't know what else to do for us. I know that he has to be frustrated. However, his next plan is to contact the doctor who did Kylie's motility testing in Ohio and see if they have any more insight. In the mean-time, we will just be waiting to hear from him. We would sure appreciate your prayers for both of these doctors--that they would be able to come to a diagnosis for Kylie or that they would be able to lead us in the right direction. Another prayer request of ours is that we might be able to come to the end of all of this by the beginning of January when our baby is due.

I should also mention that Kylie seems to be feeling great, which is a huge blessing. She doesn't complain of tummy aches or doesn't ever seem to feel uncomfortable. She never did as a baby either and I have no idea how she didn't just feel so irritable and miserable. I would just about get miserable for her by looking at her huge tummy.