Kylee Has Passed

This will be my last post. Kylee has passed away on Sunday morning at 5:43 am with Jason and I by her side. We had the best last two weeks with her right up to the very end. She was so happy and had alot to say. Jason and I were with her when she passed and it was so peaceful. I can not thank the staff at Children's Hospital enough or Melissa Borth for everything they have done for us during this time. Kylee actually passed on Melissa's birthday. Melissa has been a nurse who has come out to our house since Kylee was just a few days old. Her showing it tonight from 4-7 at Cline and Hanson and tomorrow from 10:00 to 11:00 with funeral at 11:00 at St Patrick's in New London.
Thank you to everyone for all your support during this difficult time.

Update

Things are going well. Kylee is sleeping a lot more but when she is awake she is full of smiles and laughs. I asked someone how much longer they thought she had (I know I can't hold them to a date but just wanted an idea). They said if things keeping going they way they are they are thinking of middle of the week. She is my Irish girl...so Thursday is St Patrick's day. Again...I can not thank everyone for all your thoughts and prayers and I can not thank the staff at Children's Hospital of Wisconsin enough.

Resting Peacefully

We made some tough decisions in the last week about Kylee but have decided that it is time to stop everything and let her go to heaven. She will be staying at the hospital until then. We had to explain to Collin that Kylee will be leaving us and that was so hard. We also made some hand molds of her and made a family collage of our hand prints. Kylee is so peaceful right now. I have never seen her more peaceful in my entire life. Nothing seems to be hard or difficult for her (she was not liking being moved or having her diaper changed and she was throwing up all the time). Please pray that we have the strength to get thru this difficult time and that Kylee goes peacefully. I can not thank the staff at Children's Hospital enough for everything they have done for us. They are amazing.

Neenah

Sorry I haven't posted in a while. A lot has happened. We had made the decision on Thursday to take Kylee off of life supports and leave it up to Kylee as to what happened from there. Well as we know she is a fighter and still handing in there. She is having some lower oxygen stats and harder time breathing but other then that doing pretty good. We didn't expect her to do so well so we really didn't have much of a plan after that. If all goes well we are going to be heading to Neenah to Children's there to be closer to home. Collin came up today to see Kylee. We had talked to the child life specialist on how to explain death and dying to a six year old. She said it would be best for him to see her so that all of a sudden one day she is just gone and he never sees her again. So we decided today was a good day as she looked pretty good and had alot of tubes removed. He was happy to see her. Thanks everyone for all your prayers and support.

1 Step Forward...2 Steps Back

Yesterday was a really bad day for Kylee and for all of us. Her sugar levels went over 600 (that is as high as the meter goes in the room) so she was started on insulin. They were not able to back her down off the vent at all. They wanted to take her to the operating room to place a PIC line (kind of like an IV line under the skin) however they felt that was to risky so they tried it bed side. I told the Dr the only thing I wanted was to be able to hold my daughter so he thought if he did it bed side if something happened I would be right there and could hold her. They ended up not being able to place the PIC line and just but in another IV line. They are having problems not having enough IV lines for everything she needs (medicine, blood products, fluids.....). We talk about possibly taking her off everything and how that whole process works (they let us do pictures with her if we would like, they do her foot and hand prints in stone and paper and then we decided how to go about removing things and keeping her comfortable). She had lots of family come to visit today and I took 24 hours off from phone calls and computer updates. The miss Kylee stepped up to the plate and once again showed us how strong she can be. Her sugars are now down to 200-300. They have started to bring her down on the oxygen part of her vent and her BPs and heart rate have been great. She is such a strong girl. She wanted to show me that it wasn't time to give up yet :) Thank is my girl. I love her so much.

No surgery

Kylee ended up being scoped from the top down but they saw nothing that would actively bleeding. She had a breathing tube/vent placed on Friday as well as a chest tube to drain the fluid around her lungs and a NG tube placed to get all the yuckys out of her belly. She has been able to go down on the vent settings a little but usually ends back up. She is also getting some medicine to help get the fluid off her body. She is probably about twice the size she was before she went in. They really are not finding much wrong with her other then the flu (type A...yes she got a flu shot). No reason for the bleeding or how she could have gone from being so healthy on Monday (we had a full day of appts in Milwaukee and all said she looked great) to so sick and in ICU the next day. Sounds like we have a long road a head of us but we will take it one hour at a time. Thank you everyone for all you prayers.

Surgery

Kylee has just continued to get worse. She started bleeding again. Is having a lot of issues with breathing and pain. They have decided to place a breathing tube to help her with her breathing. They are also taking her down to scope her and will have surgeons on standy in case they would need to do surgery. It is very risky to put her thru this right now however they feel she will not get better if they don't go in and fix whatever is going on. I will try to post after the procedure/surgery is done.