Thursday, April 28, 2011

Line Break

Aubree's line never did make it back to working right. We tried all day Friday, Saturday, and Sunday. But Monday morning we were back up at Primary's for her line to be replaced. This was supposed to be an in and out surgery, and it is for most people, but Aubree was having a hard time breathing, because of her cold that she has had for over 4 weeks, so the Anesthesiologist wanted to keep her over night to watch her. That night her Oxygen level kept dropping, and an xray showed junk in her lungs, so they wanted her to stay to be monitored. So we got to stay the next night also, she gets really congested and so that makes it hard for her to breath and it is still making her oxygen drop but they decided to let us go home anyway and just keep an eye on her. I have to get up a couple of times at night and put saline in her nose so that she can breath better. She's also been throwing up blood here and there and today she it was worse, so I got to call clinic today also. They said that we didnt have to go in, but that we will chat tomorrow to see how things are going. So far she's doing ok, she had a little blood the last time she threw up, so maybe we wont have to go in. They will probably want to do a scope on her to make sure that everything is ok in her throat and stomach, so we will see.
Other than that she is doing good, she is starting to really crawl and I am sure by this time next week she will be really fast. We have her feeds up to where she is only on them for 14 hours a day. She is making progress. They only thing that really has me worried is she refuses to eat anything by mouth. I have to shove things in to get her to eat. I know that I need to be patient, but I really want some normalcy, like the feeding tube out and her eating and not always connected to a back pack that we have to lug around all the time. I also hate calling clinic everyday with something new that has happened. I really struggle with when to call them and let them know when something has happened. I dont want to be the mother that is always calling for every little thing, but I dont want to be the mother that doesnt call and she gets really sick. Hopefully she stops having things that I feel the need to call and let the Doc's know that something happened. That we can go a couple of days with out having to be in clinic or at the hospital. Ugh..... I will stop my ranting there! :)

Sunday, April 24, 2011

Being Home

I have to say that being home is really crazy. It takes so many people to do what was done in the hospital. I have two of my sisters coming up every week to clean, my mom is here everyday cleaning, my dad comes a couple of times a week to clean and my ward sends people over once a week to clean. (my ward has been awsome, all 6 months that we were in the hospital they brought meals three times a week over, now they are helping me clean. AMAZING!) I am in charge of Aubree's care and cooking, but my mom still does all the grocery shopping and cleaning of the food before she puts it away. My oldest sister came and took my kids to sleep over at her house one night last week to give me a break of taking care of all of this and my two other children. I am amazed that people do this all the time, there are many children who have their chemo at home the whole time, and their parents do this, you people amaze me.
Aubree is doing good, we have been able to up her feeds to 20 mils an hour, she does not throw up during the day to much anymore, if she does its usually just mucus from her cold. During the night she is still throwing up quit a bit, and last night I dont think she kept any food down. I am convinced that its the TPN and lipids. I think her body can only handle one type of nutrition at once. Two nights ago I did not give her the TPN and lipids and it was night and day. She threw up once, but it was hardly anything. I didnt give her TPN because she had a line break. It was her first line break and I thought that we were going to be able to make it without one. But no such luck. We went in to have it fixed and it wasnt working really well. It had clotted off, so they put TPA in her line, a product to help declot her line. She had to keep it in over night and we went in yesterday to see what was going on. If her line didnt unclot we were looking at surgery to replace her line if it didnt declot. But we were able to go in and they did another repair on the line and one side was working, I am waiting for home health to come and declot her other line. I dont think that they will take her to surgery if she at least has one line working. The bad thing is that the line that works in the line they can not draw a certain lab out of, so she would have to be stuck every time we went into clinic so they could get an accurate level of the drug in her body. Horrible if you ask me, its the one advatage of having the line in the first place. Other than that she is doing so good, she loves being home, she loves being with Aundrea and Nelson. She is starting to crawl to try to keep up with them, but she is very slow. They have to be really close for her to try or she has to really want something to crawl to get it. I feel as though I am rambling, it could be lack of sleep, so I am going to end here.

Coming Home

Aubree so was so excited to see Aundrea all she wanted to do was pat her, its her thing when she really likes someone, she likes to pat them.

The bell that is rung at the end of treatment. It says, "Ring this bell three times real well, the toll to clearly say, this treatments done, this course is run, now I'm on my way."

When you are done with your treatment the staff comes and sings to you, your chemo is over song, to the tune of happy birthday, Aubree loved it!

Here she is almost getting the concept that she is suppose to ring the bell.

But she caught on real quick!
It was a very sweet moment, to realize that she was never going to have to be given chemo again! To hear the ringing of the bell was the best sound ever, but I have to say to hear Aubree ring it was the best ever.

Sunday, April 17, 2011

We are HOME!

Aubree was sent home on Thursday this week. She was able to keep down her oral medications and her platelets were holding on so she only needs to be transfused twice a week, and she wasn't throwing up all the time, only some of the time. So they said she was good enough to go home. It has been great being home, and I think Aubree loves being home with her family. When she first came home and saw Aundrea all she wanted to do was be right next to her and pat her. She loves to play with them, or just watch them play together. It has been very busy for me and my mom. What took a small army at the hospital to take care of Aubree, now falls on us. There are specific things we have to do each day to clean and once a week, like wall washing. There are also very specific ways in which we have to prepare her food. We have to act kind of like we are in a third world country with everything that we prepare or buy. We have to wash all of our fruits and vegis in bleach water before putting them away, she cant eat berries of any kind, or leafy veggies. She also came home on TPN and lipids, this is her venous nutrition, I have to get it ready and then also access her central line, she is on it for 15 hours a day. She is also on a feeding tube, and I have to take care of that also. She is on 15 oral medications most are given twice a day and some are given three times a day. She has a little back pack that she carries around with her that has her three pumps in it, along with her feeds, and TPN and lipids. She still throws up three to four times a day, mostly at night. She has a cold and the mucus from the cold makes her chock and gag and then throws up. We really hope that sometime soon her cold will get better, but it could take months for her to get better because her body doesn't have the ability to fight a cold.

Thursday, April 7, 2011

Poop never smelt so good!

Aubree with her NG tube Here is a after picture of Aubree to show just how much water weight she has gained
Here she is just before chemo, its no wonder she cant move around!

The one way I know that Aubree is kind of processing the formula that is going into her stomach was the nasty stench of her poop today. It was so nice to smell the awful smell. The doubled the amount of formula going into her stomach from 3 mls to 6 an hour. That is the equivalent of just over 1 tsp an hour. She started to throw this much up so they have taken her down to 4 mls and hour. But she is taking all of her meds orally, well through her feeding tube. We are trying to have only positive experiences with her mouth and taking meds would not be considered positive. If she can keep down her 4 mls an hour and all her oral meds, the only thing left for her to do is be able to go two to three days without needing platelets and then she can go home! Even though I am so overwhelmed with the thought of taking care of her at home and all that it will require, my other kids need me home and I think it would be good for Aubree, so we are looking forward to coming home.

Wednesday, April 6, 2011

Day +26

Yesterday was day +26 for Aubree, it was a very important day because she en-grafted!!! Her bone marrow transplant is considered a success. I am so excited, I waited till today to say anything because her numbers had to be above 500 two days in a row. Today her ANC was 800! Her body is working so hard. Today the Doctors are talking home. It doesn't meant that we will go home tomorrow, but sometime in the next week. She has to be able to take all her meds orally first. Today she will get a NG tube, this is a tube that goes in her nose and down to her stomach. They will start feeding her slowly to see if she can keep it down. She was eating earlier this week but she is no longer eating. The NG tube will help her stomach stretch out so that she can tolerate bigger amounts in her stomach. So fingers crossed she will!

Saturday, April 2, 2011

Day +23

Aubree is still doing good. Her ANC is still at 100, its been that way for a week. She is still eating the about the same, so no real changes. We had hoped that she would have engrafted already, she needs her ANC to be 500, but her body could just be trying to heal its self and using up all of her nuetrophils. She is getting platelets everyother day now, and she doesnt need whole blood anymore. So she is slowely getting better. My thoughts are with Kim Nelson's family, I never got to meet her, but all the nurses talked about her. She was an amazing person! I love you Julie, thanks for the example of faith and love and strength you have shown!!!