So Good to be Home

We are home at last and are so thankful. Yesterday was such a long day of waiting and finishing up on all of my training. We were dismissed about 5pm. I was really anxious about getting Kylie all hooked up to her pump last night. My mom graciously came out to help and support me. It all ended up going really well. Kylie has a twelve hour infusion of her nutrition from about 8pm-8am. It is quite involved to get everything ready and hooked up, but I know that it will only get easier each time I do it. This morning, she is doing well. She's been resting some and playing some. Carson is still at Opa and Oma's and they will keep him for just another day or two so we can get used to Kylie's pump and get settled once again here at home. Kylie has an appointment tomorrow morning with Dr. A. He will be the one overseeing her labs and nutrition until we are off of the TPN and lipids.

Again, we cannot express how thankful we have been for all of your prayer support. The Lord has sustained us through the past two weeks and we will continue to trust Him with Kylie's future. Will try to post updates here and there to let you know how she's doing.

Miraculous News

Kylie had an x-ray this morning which revealed that all of the air that was there just yesterday is completely gone today! It is truly a miracle of God and we give Him all of the praise and glory. Though the air is all gone, Kylie does still have what they call an "ileus". Basically, this means that her intestine has not completely kicked in and started working in its entirety as of yet. This commonly occurs after abdominal surgery and doctors are not at all concerned. This will work itself out over time. She has been given permission to eat whenever she is ready. However, she isn't to that point quite yet. From a surgical standpoint, Kylie is doing great, and they are ready to send her home now that the air is all absorbed. So this is the plan...she can go home tomorrow on TPN and lipids (nutrition through her central line). This way, Kylie can start eating whenever she feels good enough and she doesn't have to be a prisoner in her hospital room. We are so thankful that Dr. A suggested putting a central line in when he did the surgery a week ago. At 5pm tonight, the home-health nurse is coming to give me my first session of training so that I can give Kylie IV fluids at home. They will come back tomorrow morning and give me a second teaching session. We are so so excited about this news and cannot wait to be home once again. It is so sweet to see Kylie's spirits lifted by this great news.

No Leak!

My mom and Kylie just returned from the procedure. They did NOT find a leak. Such a huge huge praise! Dr. A is saying that her intestine is just really, really slow to wake up. They want to continue to give her more time to recover and keep her on the TPN.

Off to X-ray Procedure

My mom so graciously took the afternoon off of work so that she could come and help me out this afternoon. Since I can't be in the radiology room with Kylie due to being pregnant, my mom is going with her for her procedure. For this procedure, they will put some contrast up her bottom and look for a possible leak in the intestine. If there is a leak, another operation will be absolutely necessary to fix the leak. Thankfully, they will be giving her some Versed to help sedate her. Will post something as soon as we hear the results of the test. Thank you for praying.

Watching and Waiting

Brianna reading "Nurse Nancy" to Kylie

A walk in the hall with our masks on

Taking a break sucking the fingers with blankie

It has been a very long past couple of days as doctors are continuing to watch Kylie very closely. Her x-rays are still showing a good amount of air outside of the intestine which would suggest a leak. However, her physical exams continue to look excellent--her tummy is nice and soft and there is no tenderness whatsoever. To have air outside of the intestine 6 days after surgery that has not been absorbed by the body is VERY concerning. Doctors keep expressing how abnormal this is. It is normal to have a small amount of air after an operation that is absorbed by the body soon after. They have been drawing Kylie's blood every day to check for infection. If she would have a leak, she should be showing signs of having a bad infection. However, her white blood cell count couldn't be more normal. So, at this point, doctors are very very confused. For now, they just want to continue to watch her very closely.

Today is the first day that she has felt better since about Tuesday last week. I think that part of the reason that she is feeling so much better is because her TPN has kicked in and is giving her some energy. She has lost so much weight, it is unbelievable. She is seriously so fragile--just skin and bone. It has been such a long past few days in our room since they have instituted the new H1N1 policies. However, we have a huge answer to prayer as of today. Kylie's doctors want her up and walking in hopes that it will help to move this air. So, they have given a special order for her to leave her room and walk 4th floor with a mask on. This has been SO therapeutic for her today.

Kaycee went out and visited Carson today. Carson has been doing so good with Opa and Oma. He said that after Carson's nap today, Carson showed him how he goes out and collects the eggs from the chickens. He puts them in a bucket without breaking them :) And then he showed dad how he pedals the old John Deere tractor. Carson has just recently gotten really good at pedaling from being around his cousins so much. I guess that last night they all had a bon-fire and roasted hot-dogs and marshmallows. He's having the time of his life and I'm so so thankful for all Kaycee's parents have done and continue to do for us.

I am also so incredibly thankful for my mom and Brianna who come and visit us every day. My mom has brought some wonderful meals up to us. The cafeteria food gets old really fast, so her cooking has been such a treat. Brianna is a great little nurse to Kylie. She's practicing now because her dream is to be a nurse someday :) Tonight, she helped me walk Kylie in the halls, entertain her with games and toys, and helped me give her a bath. I praise the Lord today for the blessings of family!

New Development

It seems like a lot has happened in the past 24 hours. Kylie had an incredibly great day on Wednesday. She was up and around a ton...on walks around the floor and to the play-room to play. We also knew that she was feeling better because she started getting demanding and commanding us around :) We were so thrilled with her progress.

Yesterday morning when she woke up, I could just tell that she was a completely different girl. I thought that maybe she was really uncomfortable because they had taken her off her morphine. As the day progressed, she just felt and looked so ill. I was really getting worried. She did not want to leave her bed all day long. Late afternoon, I asked if a resident would come and examine her because I noticed that her tummy looked quite distended. He did come by and said that he wasn't too worried but that things are probably distended just because they are slow to start kicking in and working again. They said that they would just keep an eye on her. Through-out the evening, she started having her first poops since surgery--yeah!! We get really excited about that around here--pathetic, huh?

Kaycee stayed the night with her and said that it was a rough one. She didn't sleep at all until 4 am this morning. About 3 am, she threw-up which was definitely concerning. So shortly after that, she went down for an x-ray. They put her back on a little bit of morphine which helped her go to sleep almost immediately. She slept till 9:30 this morning when the docs came in for rounds.

So here's what her x-ray showed...unfortunately, it appears that there is some air located outside of the small intestine which is very concerning. When they connected her small intestine to her rectum on Monday, they checked to make sure that everything was completely air tight and water tight. And the test passed--everything looked wonderful. So, Dr. Abdessalam is very unsettled right now. If there is a leak in the intestine, it would require a re-operation. I can hardly bear the thought of sending Kylie back to surgery right now. However, her physical exam this morning looked so much improved over last night's (distension is much improved) that for now they are just going to keep a very close watch on her tummy. I believe that she will have another x-ray later on today. They may have to put some contrast up her bottom to get a better idea of what is going on with this possible leak. Doctors and nurses will be in frequently today and keeping a very close eye on her. If she would start to develop a fever or any abdominal tenderness, that would be a huge red flag and they would probably want to get her to surgery right away.

They are also starting Kylie on TPN (total protein nutrition) today since she has not eaten in a week.

The other huge development around here at Children's are the new policies that they have instituted over-night due to all the cases of H1N1. It is just erie around here this morning. Starting this morning, everyone has to wear masks. I have to wear a mask everywhere but in Kylie's room and all the docs and nurses have to wear masks into the patient rooms. Fifty percent of each floor is infected with the flu. I guess that kids that were coming in with totally unrelated problems were contracting H1N1 symptoms within 24 hours of being here. The playroom is closed on all of the floors now and Kylie is confined to her room. Please pray for her sanity as she is used to getting out of her room. Kaycee and I can relieve each other, thankfully. But I worry about how cooped up Kylie is going to get. I also wanted to let all of you know that they are supposedly not allowing visitors. The only people who are permitted into the patient's room are the parents, grandparents, and siblings. I will let you know if that changes at all.

We'll keep you posted as to how the day progresses.

Operating Room Pictures

Dr. Abdessalam took some pictures for us in the operating room. After doing some contemplating, I have decided to post them. However, so you know, they are pretty graphic. So, do NOT scroll down if you don't think you want to see them. I am continually amazed every time I look at the pictures. After Kylie had her ileostomy for 9 months, her large intestine was about the same diameter of a grown man's thumb. The pictures below clearly show how huge and abnormal her colon became after her reconnection surgery just four weeks ago. In the second picture, you'll see a very enlarged portion of the colon on the right side. Dr. Abdessalam said that that area was the size of an adult's colon! Not a four year old's! I still can't believe all that fit inside her little tummy. So, here they are...........

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One meter in length

Up and Around Today

Kylie has been doing wonderful the past couple of days. Today is the first day that she has been up walking. We walked to the playroom this morning and played for a long time. She begged all morning to eat something but they are not allowing her to eat or drink anything for the time. It is almost 3:00 and she has been napping since noon, even with all of the distractions this afternoon. I am so so glad to see her resting soundly. I think that's all I know for now.

Thru Surgery and Doing Well

Kylie made it through surgery beautifully. She was back in the operating room for about three hours. Dr. Abdessalam came out to give us the full report at about 3:30. Her colon was about 1 meter in length (3 feet). The circumference of the colon was that of an adult--clearly very enlarged for a child her age! He took some pictures for us to see and it truly was unbelievable that all that could be in her little tummy. They sent her colon to pathology for further study. They also put in a central line while she was back in the OR so that she would not have to poked at any more if her IV went bad. The central line is also there in case they need to give her any TPN (total protein nutrition) should she not be eating well. We are all amazed at how flat her little tummy is now. It is unbelievable. Kaycee is staying the night with her tonight.

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.