Tuesday, May 31, 2011

Boo

Aubrees blood culture grew out so they are taking it out tomorrow! Happy Birthday!

Infected Central Line?




Aubree had another fever today. That is not a good sign for her and her central line. Her blood cultures have all come back positive the last couple of days. They are waiting for her blood cultures to come back today to see if they grow bactieria or not. If they do they will pull her central line and replace it. She will have a regular old IV for a couple of days till they decide that the bacterial infection is gone, then they will decide what kind of line to put back in her. She will need a line for months to come, and we still use it, even at home, a few times a day and all night. If her cultures come back with no growth she will still be in the hospital for a couple of days because of the fever today. This means that she will be there for her birthday tomorrow. If she needs her line pulled, they will do it tomorrow. I am so sad that she will be there on her birthday and even more sad to think that she might go into surgery. But the only holiday she has spent out of the hospital is Easter so I guess its just one more "holiday" in the hospital!


Sunday, May 29, 2011

Doing better

Aubree is doing better, her fever is gone for now and she is sleeping after such a rough night. The doctors were able to identify what kind if gram negative bacteria that's infected her and say it's a common one and that it usually responds well to the anti-biotics they have her on. With gram negative bacteria after the first dose if anti-biotics they usually see them get worse before better because of all the toxins in the blood from the killed bacteria. They think this is what happened last night. They do not expect her to repeat it again and would be very surprised if she did. They think the latest she will get out is Wednesday afternoon, just in time for her party! Yea!

Saturday, May 28, 2011

Bacterial sepsis agian

Back to Primary Childrens

Aubree was admitted last night around 1 AM with a fever. If she gets a fever of 100.3 F, you get a bed automatically. So when I took her temp and it was 100.5 I knew that we were going back but we needed to call the Doc's to tell us to go. She had fevers off and on last night but seems to be ok today. She has to go two days without fevers to go home, so if she has no more fevers we could be home by Monday but most likely it will be Tuesday or Wednesday next week. She has not grown anything on her blood cultures so my thoughts are that she has what ever bug Nelson had last week. He had high fevers off and on for two days and then was just fine, so if she follows him we will be back home Tuesday just in time for her birthday on Wednesday!
I was reading somewhere that ranked Primary Children's Oncology as 38th in the nation. But I sure dont feel like they are when I go in. The one good thing about having to go in, is the staff. They are AMAZING! They are so warm in welcoming and I know when we go that Aubree is going to get great care.
My mom was suppose to have this weekend off, she was going to go to a wedding, she got my message this morning that Aubree was back in and came right up to relieve me so that I could go home and sleep. She knew that I hadnt had much sleep. My Dad didnt complain about going to the wedding alone, and freely let her come. I have the best parents in the world. They are so supportive and I would never have made it through this without them.

Thursday, May 19, 2011

Busy, Busy, Busy







Life with a moving baby is busy. Aubree learned to crawl and loves being able to go where ever she wants and get into everything. She has learned how to turn the DVD player off and on, this makes Nelson and Aundrea sooo happy when they are watching a movie! She has learned where all the big toys are, and crawls into Aundrea's and Nelson's bedroom to play with them. She is just to busy. Half the time she is hooked up to her IV medication so we are playing follow Aubree.

She is still not eating. We are so excited when she will eat 3 cheetos for dinner. I have been able to take her from continous feeds to just feeding her 5 times a day. This does mean that I am up at 2 am feeding her. But I am up at midnight and 2 and 4 and 6 anyway. Not to mention that I cant go to bed till after 10. She is just so busy with everything.

It has been a hard week for me. With the passing of Tanner and Kim, I know I shouldnt but I do wonder why is Aubree blessed to live. Before Aubree was diagnosed I knew that she was going to get sick. I would sit on my couch and think how I would handle being with her in the hospital all the time. What I would do with my other children. I would also see her in a small white casket, but because of the loving mercy of our Heavenly Father that will never happen. And I wonder why, but I am so greatful for the blessing of having her here and getting healther everyday. I dont know how long it will be till she is healed completly or if she ever will be. But I am just so greatful that she is here, and I feel selfish sometimes for it.

I hope that Andrew gets better soon. I went up and saw Lizzie and Andrew earlier this week and it brought back feelings that I never want to be dragged back up. So I hope that he gets better soon, that they can take him home and he can be a happy little busy baby.

Saturday, May 14, 2011

Home

Aubree came home yesterday. She responded very well to the steriods and her stomach started working with in a couple of days. She is eating a little and doing really good on her NG feeds. While we were in the hospital she got a bacterial infection in her blood and so we came home on two anti-biotics, and they also changed her anti-fungal to IV. I am very busy all day and all night with her medications, but its worth it to be home.
I am just glad that she is home and doing so good. I fell so blessed to have her on the mend. My heart goes out to Tanner and his family, I cant imagine what you are going through. My prayers are with you, and my heart breaks for you!

Saturday, May 7, 2011

Graft vs Host

It has been a rough week for Aubree. She has not been feeling good since the scopes that were done. She has stopped bleeding but she is no longer processing anything in her stomach. She throws up all the bile that she makes. When she was on feeds through her NG tube she would throw up. They stopped the feeds, and then the pressure of everthing in her stomach made everything come out of her NG tube. So she is no longer putting anything down her tube but it is being used for a drain. This is nice because at least she isnt throwing up anymore.
They have done a number of tests, including 18 biopsy's from her intestinal tract. Everything has come back normal. The only thing that didnt was a little bit of inflamation in her stomach. With her not being able to move anything in her stomach to her small intestines, with her cell counts dropping and with everything else that is going on they have decided that she must have graft vs host in her stomach. They have started her on steriods to help with this and put her on an IV version of her rejection drug. (she also is not absorbing her medication in her stomach well) These two things should help her to be able to start processing things in her stomach. The steriods make her very aggitated and she is not very happy. It could be a long couple of weeks for all of us!

Sunday, May 1, 2011

Back in the Hospital

Aubree has been throwing up blood this week as I mentioned before. Thursday she it was a lot and I called clinic, but I just couldnt bring myself to take her up there again, just getting out on Wednesday. So they agreed to just let me watch her and check on on Friday. Friday came and she was doing fine, then Friday night came and she started throwing up a lot of blood. So Saturday morning I called the BMT Doc on call and they wanted me to take her in and have a blood test run to see what her numbers were. Her numbers were good, so just as a precaution they decided to give her platelets hoping that would help with what ever was bleeding. They also started her on a new medication that is a lot of fun because she cant have any medication two hours before and after taking it. Good luck with that, I thought, she's on so many medications that its hard. But with a little juggling of her meds, we made it possible for her to take it 3 times a day. We went home and I was so happy that we didnt have to stay, I really hate sleeping there and having to stay. I LOVE being home. Last night I went to go change her diaper, and to my horror it was full of blood. So I was on the phone once again with the Doc's. This time Aubree won a bed on the ICS unit. They wanted to get more blood and see if her numbers had changed much from the morning. They hadnt but they still wanted to see if she would poop more blood and so we were there for observation. She has pooped blood every time since. Also her numbers this morning have gone down 3 points. So we are not going anywhere. Tomorrow she will have a GI consult and a scope on both ends to find the bleed and see what can be done to get it under control. We will stay in the hospital because there is always the chance that she will start to bleed a lot and will need emergency help. I would prefer her to be there just in case that happens. So we wont know much till tomorrow about what is going on.