Hunger partially satiated

They did let Kaelyn start on clear liquids yesterday. I had the surgeons paged twice in order to get them to make their decision and put the orders in the computer. They said at 7:15 am that they would make the decision, but it didn't actually happen until around 11. A 5 year old does not understand that the doctors said yes you can eat, but you have to wait until they put "orders" in the computer. It was a rough 4 hours. She still wants more then just broth and jello though. She keeps asking why she can't have noodles in her soup. Hopefully today they can advance her to atleast a full liquid diet. Then she could have malt-o-meal and yogurt.

They also took her off of her epidural last night. Wade spent the night with her and he said it was miserable. They put her on an oral pain med. This made her belly hurt, since all she has in her tummy is liquids (I am very upset they did this, you would think dr's should think about those things...grrr). She also is having some pretty bad gas pains that I guess the epidural was masking. The pain service needs to do something more for her. Wade had them paged around 4 times last night, but it sounds like they really didn't do much. They actually made her get out of bed and try to walk around 3 am! She hasn't been able to sit up let alone stand!!!! I am very upset. When I get in there today, there will be some heads rolling. I am usually a very calm, quiet person. But this day is the day my inner banshee comes out. What were they thinking?!!

On the flip side, today is the Pinewood Derby for Jacob. So he is going to go race his car that he and Wade made. I have to put on a happy face for now. Jacob deserves that. He really is a superhero alongside Kaelyn.

Hungry

Kaelyn is hungry. And the docs do not want her to eat yet. She tells me everytime she opens her eyes that she is starving and that the mean doctors haven't let her eat for four days. She is breaking my heart. The docs have good reasons for what they do, but I don't think they have spent any amount of time with a 5 year old that hasn't eaten in four days. It is stressful and extremely hard. The surgeons say that since this was such a extensive surgery involving the intestines they want her to take it slow with the eating. Hopefully tomorrow they will let her start with clear liquids. I almost wish she was sedated so she didn't have to go through this hardship. Poor little thing. She is also very swollen, her cells are really leaky causing her to be puffy everywhere. This is also very uncomfortable. I tried to get them to give her some lasiks to help dry her up, but they don't think it would help at this point. Maybe in a couple of days. Kaelyn is getting very tired of people telling her that she will be able to eat tomorrow. Tomorrow is a very long time for a five year old.

At least she is starting to be more awake and not in so much pain from her incision. I guess we have to take the pluses as they come. More tomorrow...

Feeling yucky...

We were transferred yesterday from the ICU to our room in the ICS (Immunocompromised Services), that is a good thing. It is so much better here. Quieter, less hustle, and a bed for a parent. Kaelyn is doing okay. She is still in a bit of pain. She had a really rough night last night. With blood and albumin transfusions, fevers, blood draws, pain and all around discomfort. The surgeon said that this is a very painful procedure, especially when you have a liver surrounded with as much scar tissue as Kaelyn had. It was adhered to the abdominal wall, so he had to cut it free. That in itself is very painful. Today we were minutely able to smooth her pain. That is, it was a little less than the night before.

We drew blood cultures last night because of the fever and the already have come back showing some growth. So she does have some sort of blood infection also. This is not so good news. This could mean that there is a leak somewhere in the liver or intestines. If that is the case, then it could mean more surgery. This was part of our apprehension for doing this procedure. We will see what bacteria does grow out of the blood and go from there.

She also is so hungry and the surgeons don't want her to eat. They have good reason, not wanting the liver to have to produce too much bile at the moment and her gut may not be fully revived after the surgery, but it is so hard for Kaelyn. She doesn't understand why the doctors would make her starve. This part is really hard on me and Wade. We are hard wired to provide basic needs for our children, and that includes feeding them when they are hungry. Maybe tomorrow they will let her eat.

I just want to skip this part and get back to having a healthy, well little girl. On top of it all, I have a silly chemistry final on Monday that just doesn't seem important now at all.

Prayer for comfort from the pain for our girl. She could use the extra blessings.

Love,

Angie

In ICU

Kaelyn was in surgery for about 5 hours yesterday. The surgeon explained that she has a whole lot of scar tissue and it took longer to get to where he needed to be. He actually had to extract the whole liver out of her body to get do what was needed. I was not aware that it was going to be that extensive of a surgery. He was able to go in and excavate the liver to the bile duct and put in a stent and suture the opening large enought that it should drain well. She is not feeling very good, obviously, but they did place an epidural to help with the pain. She will probably be in the ICU one more day. Her bilirubin is down, but some of her Liver functions are elevated. This is to be expected with that much handling of the liver.

I have to say that I miss Seattle Children's very much right now. The ICU here is not hospitable to parents, no parent bed in the room. I can't leave her there alone, so I slept in the rocking chair by her bed. There are many other things that I could rant about that are lacking here compared to Seattle, but I won't. Let's just leave it at I miss Seattle Children's.

I will try and update at time allows.

Rollercoaster

Okay - so we are back on for surgery today. I guess the surgeons previous cases all went really well and fast. So Kaelyn will go into the OR around 3:00 pm this afternoon. Too bad they couldn't have done her this morning...this means that she has to fast until then. No food all day makes for a grumpy girl.

I will update later...

No Surgery Today

The surgeon just came in this morning and told me that they want to postpone the surgery. So no surgery today. He said that there is a recent liver transplant patient that is not doing well, like Kaelyn did after both transplants, and needs his attention. I totally understand that. He also said that he wants to be able to dedicate plenty of time to Kaelyn's surgery and not feel rushed or get interrupted. So possibly she will go in on Friday. He said that if she is stable, they may even wait two weeks to give her time to recover from the flu (the anesthesiologists would be much happier with that scenario). I am both relieved and stressed about this! I was all ready for the surgery and the hopeful fix, but ya know, it's always good when your child isn't cut open for the day! I just hope that she is in fact stable enough to wait.

She visibly is doing much better today. Her Bilirubin is down today, not to normal, but much better then previously. She is a little less yellow and much more energetic. She currently is hiding in a nest of pillows and blankets laughing and giggling. It's good to have her back.

We may be able to go home until surgery if the docs feel she is stable enough. I will update later today after I hear what the plan is.

Surgery Details

Okay, so I talked with the surgeon yesterday and he explained the procedure to me and why we need to do it so quickly. The bile duct that we had the drains in a few years ago are not draining. The past few years they were draining only a trickle at a time into the common bile duct, but it was enough. Now the place that it was draining from is totally closed off. He said that they will have to make about a 5 or 6 inch incision in her abdomen, go into her liver and create a new duct (his words - boar a hole in her liver - sounds scary) from this undraining bile duct to the common bile duct. Luckily the bile duct that needs to be drained is very large because of all of the back up, I guess this helps. He said that there could definitely be complications, like leakage or if he even nicks or messes with the main portal vein their could be problems. The main portal vein is basically the only blood supply to her liver since her hepatic artery was blocked at transplant. The other complication may be her lungs. Since she has had the flu her lungs are not so strong. She may have to spend some time in the ICU intubated (with a breathing tube). Also, not fun. But he believes that we need to do this surgery as soon as possible. If we wait,like the anesthesiologist want to, the liver will start to deteriorate even more causing more damage to the liver tissue and making it harder to operate. Also if we wait she will most definitely get an infection and have to have drains placed, which is not a fix only a bandaid. And we all now how hard it is to have drains. When she had them the last time, she was in and out of the hospital every two weeks with drain replacements, infections, IV antibiotics and other craziness. Hopefully everything will go well. And we can have our pink, happy little girl back.

She will go into surgery tomorrow morning, I am not sure what time exactly. I will post updates tomorrow.

Angie