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Tuesday, May 11, 2010

Not A Very Good Day!!!

Today definitely didn't go quite as we had planned. During the night last night, Ella spiked a small fever and her heart rate increased. Her hemoglobin also dropped so they had to start a transfusion early this morning. Needless to say, I got very little sleep. When Ella woke up, she seemed about the same as the last few days. Not a lot of energy, didn't want to sit up very much and was just kind of hanging out. She would just lay in her crib and watch her DVD player and occasionally kind of sit up for a few minutes but never seemed very comfortable. We still weren't sure if she was sore from the bone marrow biopsy or if the chemo was making her feel blah or what. They wanted to do another echocardiogram of her heart to see if the fluid was better, the same or worse. It appeared to be about the same. They have been watching this extra fluid around her heart for the last few days. They wanted to see if it got worse or if it might get better with the chemo. They were deciding between going in and trying to drain it under sedation or waiting until they do the surgery to put her broviac line in her chest because then they would have her under general sedation. But they weren't going to be able to do the broviac placement until after the chemo is done which won't be until thursday night. The cardiologist, anesthesiologist and oncologist spent some time coming up with a game plan and decided that they should do something about it today because if the fluid build up got worse all of a sudden, it could become an emergency situation. So they moved her up to the PICU and got everything set up in the room. The doctor started the sedation and as soon as she started to go to la la land, they asked us to leave. He had told us that IF she had any breathing problems, they may have to intubate her but he hoped not. Joe, myself and my friend Amy went out to the waiting room to wait. About 10 minutes later the oncologist came out to tell us that when they started to put the needle in to drain her heart fluid, she started to stir and her blood pressure and breathing started to slow down. They didn't want to take any chances so decided to intubate her (put a breathing tube down her throat) so they had complete control of her body. The rest of the procedure went smoothly, however, they had a lot more fluid come out than they expected and it was mostly blood. It was DEFINITELY the right call to do the procedure immediately. They decided to leave the chest tube in overnight to see if it continues to drain. If it appears to have stopped by morning they will hopefully remove the tube. They also are leaving her intubated until morning so they can keep her heavily sedated so she won't mess with the tubes. She appears to be very stable but it is hard seeing her basically paralyzed and asleep. Thankfully she has two nurses all to herself tonight who will watch her every bleep on the monitors. They did restart the chemo once they got her all stabilized. They stopped the chemo during the procedure so that will put us a few hours behind in our 96 hour infusion. They will send the blood off to pathology to see if they can determine what the cause of the fluid build up is. I took pictures of her today but this computer doesn't have a way for me to download them so you won't be able to get the full effect of what I am talking about until I get home to my computer. Because Ella would be sleeping all night and had such terrific nursing care, I decided to come over to the Ronald McDonald House for the night and get a good night's rest. The house is 3 blocks away from CHOC and we will now have a room until she leaves the hospital which will be so nice for my husband on his work days.

Whew....that was a long winded post but I wanted to get it all written down tonight so that everyone can continue to pray for her. I hope it makes sense as I am mixed up and confused at this point in the day. Again, I am beyond amazed and appreciative of the support everyone has been giving us. Thank you so much!!!

33 comments:

Kacey Bode said...

Thanks for the update, I've been thinking of you guys all day. Hopefully the fluid around the heart is gone for good. I will keep praying for you guys. Give her a kiss for me!

Kristin said...

Oh that brings back PICU memories. Get some rest. Seems she is in good hands for the night. My husband prayed for her last night. It was so touching - he doesn't usually get emotionally attached to my bloggy buddies, especially to someone he's never met.

The Hapa Girl said...

You all will be in my prayers. I will tell Lillian she has a friend out there that needs her prayers too. Sonia and Lillian

Joyce said...

Oh my. I think all that fluid around her sweet heart has been keeping her lethargic. Hopefully, they have that taken care of now. What a relief to have a room at RMH. Your rest is so important. Prayers and hugs to you all.

Heather said...

Well,I did see that picture from your phone and I did not like seeing our girl like that AT ALL.Sweet baby.Praying for a restful night for everyone.Especially the little warrior.

Today was an example of that unpredictable walk with pediatric cancer and another reminder,of how very much I HATE CANCER.You know,you can borrow my "Leukemia Sucks "t-shirt anytime!

Love to you all.Can't wait to see you this weekend.Hopefully Ella will be able to take advantage of a ride in Zoey's "rental vehicle"!

Pallavi said...

I hope everything goes well. Thanks for updating, it must be very difficult to manage home and hospital stay. Continuing the prayers. Hugs to you
Take care

Tina said...

Oh Denise that is so hard on all of you, I can't stop thinking of Ella and what she must be feeling, so confused. But you don't worry, just get rest and concentrate on Ella and we are taking care`of all the prayers this end.

You are in my thoughts and so is my little precious Ella, she will be fine, I just don't think of it any other way...only sending positive energy to her.

Hugs to our little warrior and to you as well, stay positive which I believe you are...you are amazing, just keep the faith ;)

Looking Up said...

I don't think that I got more than 20 min sleep total during the two weeks that my son was in the hospital after his open heart surgery lasy year. There are few things in life that will make you feel more helpless than having a child who is seriously ill. Knowing that so many people were praying for my son was the only thing that got me through that terrible time. Hoping that you find comfort in knowing that we are praying for your little one. Kim

Adam, Jaci, Grant and Grace said...

Poor little Ella. She is definitely taking you guys on a ride. She continues to be in our thoughts and prayers. Thanks for updating us. I hope you got a little rest last night. Hugs and kisses!

stephanie said...

Thanks for the update. it gave me more anxiety, but everything does!
Praying for the Princess Warrior. And adding her name to the schools special intentions and a prayer list my friend sends out to tons of people.Got a couple of friends that are priests, I'll put them on the prayer job too.

Love and hugs

my family said...

I woke up this morning with you all heavy on my heart. I am praying today goes smoothly,and even better than planned. Hearing some of this flooded memories of heart surgery ,I pray you will have comfort at this time. I'm missin' Sweet EG smiling face:)Looking forward to happy picts of her again

Bulldogma said...

Thank heavens for the Ronald McDonald houses around the country. We have seen the inside of a few of them. My prayers are with you and beautiful Ella.

I would encourage all readers to do something in support of your local Ronald McDonald House - make a meal for them one day or do a fund raiser. We would never have been able to afford lodging during the eye surgery that gave our daughter vision if it weren't for this organization.

Hang in there Denise, and know that you have a lot of people out here pulling for Ella and for your family!
Hugs!

mandd3 said...

I too am a huge fan of RMH's. It is the only place I ever got any decent rest and also only when Tomas was in PICU and out of it. I continue to offer your whole family up in prayer, and Ella stays with me throughout the day. I hope you got a good night's sleep, but I also know that it doesn't really matter if you did. You will be right back there by your daughter's side no matter what. God bless you all,
Dorothy

Lacey said...

I'm so glad you got a room at RMH. That will be so much easier for you guys! I too hated seeing that picture of her. I hate that you have to do this with Ella, because she has been so healthy so far. Remember I'm always here and can answer questions or just chat. Love you guys!

Rochelle said...

Hope you got some much needed rest and Ella is doing well today. Thankful the dr's made the call to drain the fluid.
Praying, praying, praying. Thanks for keeping us updated so we know specifically what you need in prayer.

Love & hugs!

kecia said...

i am so glad for the update. poor little thing! I can't imagine how hard this would be for a mother to watch. I am glad to hear she is stable and that the drs made the right call at the right time. hang in there!

The VW's said...

Thinking of your family and praying often! Love, Hugs and Prayers!!!

ANewKindOfPerfect said...

Praying for Ella!! I left you a message last night. I would love to come visit this afternoon if you are up for it.

Stevenson Family said...

I'm so sorry things haven't gone smoothly for Ella!! I'm praying the next journey will be smooth sailing. Our thoughts and prayers are with you and your family.

Kristen's mom said...

Hi Denise, It is all sounding familiar. Kristen also was sent to PICU for chest tubes except the fluid was forming in her lungs. The doctors figured that her fluid was from overload due to the bolus that they gave her prior to starting the chemo. We spent 5 days in PICU and I know that the tubes saved her. Each of the 4 times that Kristen has been diagnosed with leukemia, the first couple of weeks have been the most difficult for her. I remember saying several times, “Will she ever feel good again?” I also was left wondering many times “can’t you stop the chemo and let her get feeling better?” Little did I know that the leukemia was one of the contributing factors to her not feeling good. Once the leukemia cells were killed off she was able to get some relief. The first few weeks will be no other term I can think of except hell. Things do get better I promise. And you other children will rise to the occasion and become better children for have gone through this. It will change their entire life and they will be better for it. It won’t take too long and you will find your new normal and sweet Ella will feel better . It is a long road but there is a light that brightens the way, her name is Ella. Many thoughts and prayers coming to you. I'm so sorry you have to go through this.

Mama Mason-Mann said...

Oh Denise,
I'm so sorry you and sweet Ella and the rest of the family are going through this. I was reading through some of the comments and it is inspirational to see what others have to say, especially others who have fought this terrible fought before and beat it! Just like Ella will! My thoughts are with you every moment.

AKW said...

I can't imagine what you are going through. Stay tough and know that there are lots of us out her praying for you!

Runningmama said...

Still praying hoping that tomorrow is a much better day.

mom26kids said...

we will be praying for her and your family

Adrienne said...

Oh my goodness you have had a rough day! Poor sweet Ella, praying that all goes well and they can figure out the fluid issue and take the breathing tube out.

Sally said...

I have just found you via a button on mylifewithgabriel. Ella Grace is such a darling and our hearts go out to you along with our prayers. Hang in there.

sara p said...

i will be praying for your little one, she is so sweet... it sad to think of her in any pain or discomfort:(

Lori said...

Thanks for the update, Denise. Poor little Ella. I cannot even imagine what you are going through. We took Charlie in for a small surgical procedure today, and that was bad enough.
Many Prayers for Sweet Ella and your whole family!
Hugs!!

Monica Crumley said...

Oh, my heart is so heavy reading this and picturing your sweet little girl going through all this. You're all in my thoughts and prayers.

Anderson Family said...

I'm sorry for the rough day. Sorry that she had to get a chest tube and be sedated. It is a reminder to me of what Carter had to go through. One thing about having them in PICU is the constant care - I felt so much better getting a good night's sleep knowing Carter had a one on one nurse. Don't forget to get some rest yourself - you will need it to get through long tiring days. We love you guys - and are praying for your sweet girl. Hope she starts feeling better soon!

frankanderica said...

We are praying for Ella and all of the Vollmer family. If there is ANYTHING we can do, please let us know. We are not far from CHOC and can be there at a moments notice to provide support, bring home-cooked meals, or just give you a chance to get some rest. Please be sure to take care of yourselves through all of this so you don't get run down. We are thinking of you and sending our love and prayers.

Anonymous said...

I am so sorry sweet Ella is having to go thru this. My daughter is 7 w/DS and had AML M7 when she was 3. She got really sick during treatment, had multiple complications and almost died several times. But she pulled thru and to see her today, unless you seen all her scars, you would never know anything had happened to her. I pray that your sweet baby feels better soon! I will be praying for her and you, as this will surely be one of the hardest things you will have to go thru. Lots of love from East TN Vickie

Sasha said...

I am so sorry to hear about the rough day. At least they got the fluid out around her heart. I know the tube sucks but sometimes it's needed. Our children are tough and they can recoup from a lot. Hey I was just wondering if you have heard anything about this drug called Gleevac?

Anyways it was on Dr. Oz and it is used for several cancers. I was watching the show and thought of you.I am really interested in it because my mom just passed away with cancer and my dad also has cancer and I wanted to see if he could use it. It is supposed to be a great drug and can work for Leukemia's. I am not sure about children, but maybe you could ask about it.

Sending lots of love and know that we are thinking of you.