Ambrosia's surgery went fine. She now has a more permanent line in for them to administer her chemo medicines and be able to draw blood from if needed as well. She has been smiling since the surgery and even laughing some. I've been able to nurse her so that is comforting for her when I'm sure there is some irritation and soreness from where they put the line in. 

Tomorrow, she will have a hearing test and a kidney function test before they start her chemotherapy in the afternoon. One of the medicines she will be on this time can have an affect on hearing so they are testing it before hand to get a baseline as to where she is now and will monitor it while the medicine is being administered. Because of this they are stopping her feeds and me nursing her at 4 am until after her hearing and kidney tests. They will start her chemotherapy in the afternoon tomorrow. 

The nurse tonight has been educating me on how to take care of her lines they put in while we are at home. This particular nurse we have had a lot at night and she is great. She always wants to make sure I understand exactly what she is doing and how we will be involved in taking care of her once we are home. 

I hope this visit in the hospital goes by fast so we can be home again for a full two weeks this time. Hopefully there will be no complications with this medicine. I will update as I can. 

One more day of being at home before we go back to the hospital. Things have been going pretty well. The only problem we've had is with the NJ tube that Ambrosia gets her continuous feeds through. The pump kept saying it was clogged somewhere in the line. It kept saying it every 15 minutes or so. Finally last night after we had a chance to stop, I called the home health nurse and she told me to get some Coke and flush it into her line. A little wasn't going to hurt her and the Coke would dissolve any clogs. She said to cap her line after putting the Coke in and let it sit for 30 minutes and repeat if needed. It took a little over an hour and me constantly working on it, but I finally was able to flush down her line with no stoppage. She's been back on her continual feeds with no problems since!

Yesterday Braeden had his first basketball game with the Y. He had a lot of fun, especially since he already knows two of his teammates. One is a classmate in his Kindergarten class and the other played on his Spring soccer team. He's got a lot to learn about basketball but as long as he is having fun and staying active that is what matters to me. They play with 6 feet goals and slightly smaller basketballs than normal. During practice he made a couple of goals and beamed proudly.

Ambrosia has been super sweet and smiley since being out of the hospital. It doesn't take much but a look to make her smile and giggle. It will be hard to see that go away for a little while once they start her chemo medicine again. In the end it will be worth it when she is cancer free. The doctor and I both agreed on Friday that her tummy looked smaller, like the chemo was doing it's job in shrinking the tumor. Let's hope that is the case.

I will try to update after Ambrosia's surgery tomorrow. We go in at 12 pm, but her surgery isn't until 1 pm. I don't know how long the surgery is supposed to take. I would imagine not long since they are only putting a port in for her medicine to go through. Hopefully we will get settled quickly into her room and get to relax until they start her chemo medicine.

I'm just taking this one day at a time.

Today was our first visit to the Hematology/Oncology Pediatric Doctor's office which everyone refers to as the clinic. This is now where Ambrosia will get all her care when not in the hospital. They checked all her numbers today to make sure she was ready for the next round of chemotherapy. Her numbers are looking good so on Monday we will go in for the surgeons to put a different kind of port in through which she will receive her chemotherapy medicine. This port will be one we can go home with after this round instead of having to take it out like they did the last time. We will stay the night in the hospital Monday and she will start a different set of chemotherapy medicines from last time either late Monday night or on Tuesday. This set of medicine will put us in the hospital for 5 days once it starts as long as there are no complications. So with the surgery we will be in for a total of 6 days.

Her oncologist said today that after this round of chemotherapy, in a couple of weeks after they will do another CT scan to check how her tumors are responding to the medicine. As long as it looks like the medicine is shrinking the tumors they will continue with the first round of medicine they gave and this second round and then alternate between the two. After this next round, we will be able to go home for a couple of weeks again. While we are home we will have visits to the clinic for them to monitor her numbers and progress. After her numbers go back up, we will start chemotherapy again. This process will be repeated until the cancer is gone or shrunk enough of the tumors down for them to be removed surgically. They are hoping the chemotherapy completely rids the tumors from her lungs and shrinks the one on her liver enough to be removed with surgery. If for some reason there are still a couple of tumors left on her lungs they will see if those can also be removed surgically. This is going to be our new normal life for the next several months.

Braeden seems to be adjusting well. He has even asked to go back to the hospital as he really enjoyed playing in their family room. Today he was being an awesome big brother and entertaining his sister while Wes and I tried to get our house back in some kind of order. He really is a great kid and I couldn't be blessed with a better son. I wish I had gotten some video of him entertaining her. Maybe next time.

Something I have not mentioned here and want to let people know about is that we were asked after our diagnosis if we would be willing to let researchers use the leftover tissue from Ambrosia's biopsy to learn more about her kind of tumor. We of course agreed with no hesitation. Anything we can do to help them learn more about her type of cancer so that doctors will better know how to treat it and help future families when they are diagnosed is something we wanted to be a part of.

We were released from the hospital yesterday afternoon! It's been a little crazy so I hadn't had time to update the blog until now. We had a home health nurse come to the house last night with a pump for her continuous feeds she receives through her feeding tube and supplies to go along with it. We also had to stop at the WIC office to have them add formula to our list of things we can get along with the prescription for the certain kind she needs. Then we had to get all of her prescriptions filled. Needless to say by the time I was able to relax and concentrate on taking care of Ambrosia I was wiped out and falling asleep in the recliner with her. She slept great last night in her crib and only woke up once around 5:30 this morning. She seems to really be enjoying being at home.

This morning I had to take our son Braeden back to the pediatrician as he woke up complaining his ear was hurting. He had just finished antibiotics to take care of it. The pediatrician didn't see any infection lingering so we just have to wait and see how he does the next couple of days.

Ambrosia's pump has been giving me a flow error starting this morning. I've had to call her home health people and then her pediatric oncologist office. We have determined that stopping her continuous feeds for today is fine as she has been nursing so well until her appointment tomorrow in the clinic. They will take a look at it then as we think it's an issue on Ambrosia's end of the feeding tube and not the pump itself.

Now for the rest of today I just have to relax and take care of my two adorable kids. Pretty easy task.

We are still in the hospital. The day the doctors first told us we may be able to go home the next day, Ambrosia hadn't had any breakdown on her bottom. They kept looking for her to, but she hadn't yet. So that was our ticket out of here. Unfortunately that same day after they had made their rounds she started developing the rash and sores they had been looking for on her bottom. We have all been diligent in changing her diaper often and putting a medicated cream on it but her bottom hasn't gotten better yet.

Her White Blood Count is also really high. Above normal now, which generally means you are fighting an infection of some sort. This could be the result of the breakdown on her bottom or something else. She has not been running a fever and the blood cultures they took from her 4 days ago still show no growth of any kind as far as infection. The doctor may want new blood cultures taken.

One good thing is for the past two days they have let me unhook her from the vital monitor machine and take her out of the room. Braeden spent all day Sunday here and spent the night and was here all day Monday. So being able to get out of the room with her and him was good and helpful for all of us.

We will see what the doctor says today when they make their rounds.. I am not getting my hopes up!

The doctors came in to see how Ambrosia was doing this morning and informed us we may be going home tomorrow or in a couple of days. Although the visit home will only be for a few days itself, they are hoping it helps give all of us a break. Her numbers are starting to go back up, however her ANC count has to go up on it's own without the help of the medicine she has been getting for a few days before they can start her next treatment. That is part of the reason we will be able to go home.

However the doctors were unaware she has been having issues with vomiting. I thought the nurses had been charting it but they must not have been. They are going to give her a scheduled dose of a medicine called Zofran to help with nausea. She has been getting it through her central lines (IVs under her left clavicle) but they were going to try and get a version that can go through her feeding tube as I would be able to administer that at home.

They want to continue her feeds through her feeding tube as well as letting me nurse her. I don't know how all that will work at home but I know they will make sure I understand everything before they let us go.

That's our good news! Just hope it comes true tomorrow or in the next day or so!

This has already been put on my Facebook page, but I figured out how to share it on the blog for those of you who aren't my friend on Facebook.