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.

ICU

ICU

Just wanted to post a quick note that Kylee is in ICU in Milwaukee. She was air lifter there this morning. I found her in her bed covered in blood and she had blooding coming out every end. They are not sure where the bleeding was coming from but it has stopped. They now think she is septic. I will try to keep everyone posted.

Make A Wish

Make A Wish

So now that Kylee is done with her cancer treatment the oncology department made a recommendation for Kylee to receive a Make A Wish. The couple came out and saw us on Thursday night to talk about Kylee's wish. She is wishing for a 3 season room and a outdoor swing. How the process works is that they meet with you ask you different questions and then they take it back to the Make A Wish office and they decide what they are going to do. So we are very excited to find out what Kylee's wish will be. We did however say not trip, swimming pool or pet. Those are all things we would not enjoy or don't have the extra time for right now. So you will have to stay posted to see what Kylee's wish will be.

MRI

Kylee had a MRI done a few weeks ago because she was having really bad seizures. Her worse seizures yet. We had to give her the emergency seizure medicine which we have never had to give to her before. Nothing new showed up on the MRI which is good but the way the Dr (someone who has never seen us before) told me was not so good. He told me nothing changed on Kylee's MRI however we need to decide what we are going to do as Kylee's tumor will probably keep growing and will only make her seizures worse and we will just have to keep increasing her seizure medicine. He told us we should think about palliative care as well as DNR (do not resuscitate) for Kylee. This was a shocker to me. I then asked for all Kylee's MRI results as no one had told me anything about a tumor. So what this Dr was talking about is Kylee has a "growth" that formed from her having a brain bleed when she had high BP and low platelets. It has not gotten any bigger in the last few months but they can not know if it is cancerous unless they do a biopsy on it which since Kylee can not do any more treatment for cancer there is no point in finding out if it is cancerous. The fact that it has not grown is a good sign. We also found out she a a cyst on her penial gland which may explain why she has been so tired. The pineal gland controls your melatonin which deals with your sleep. So tomorrow we are heading to Milwaukee to see several Dr's and ask lots of questions and talk about the palliative care and the DNR. The first few weeks of thinking about all that made me very emotional and I cried alot but now I feel stronger about things and am ready to deal with it.

School

Kylee is back and school and enjoying it. I had a very difficult time letting her go back to school. I felt like she had been thru so much and I had come so close to loosing her that I didn't want to let her go. I just wanted to keep her home and close to me an not share her with anyone. I talked with the school and we decided it was in Kylee's best interest to go back and so I let her go and I must say it was one of my best decisions. Kylee loves school. Almost every day her note from school says how happy she was and how well she did. They send me home lots of pictures and she is smiling and laughing in all of them and playing with her friends. I love it and it makes me feel so much better about letting her go. I love seeing Kylee happy and that is all I can ask for.

**Sorry I haven't updated much lately....things have been a little busy with the kids in school, Collin wrestling and me back at work (for now...my work is getting rid of my department).