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.
Thursday, October 29, 2009
Tuesday, October 27, 2009
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.
Monday, October 26, 2009
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.
Sunday, October 25, 2009
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!
Friday, October 23, 2009
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.
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.
Wednesday, October 21, 2009
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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