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!!!
Tuesday, May 11, 2010
Monday, May 10, 2010
Very Quick Update
I just heard from my mom that Ella had a good night. She slept all night with the exception of waking up when the nurse changed her diaper at 4am. So far no sign of nausea but I know that it may just not have hit yet. I am anxious to get back there to get her in my arms again!! I have instantly come to realize how much I miss the freedom of being able to come and go as I please and do simple things like laundry and dishes. I only slept for 5 hours last night because there was so much I needed and/or wanted to get up and do this morning.
Again, thank you so much to everyone for your continued prayers and support...you have NO idea how much it means to me .....well, unfortunately, I guess some of you do :(
Again, thank you so much to everyone for your continued prayers and support...you have NO idea how much it means to me .....well, unfortunately, I guess some of you do :(
Sunday, May 9, 2010
Here is Ella's New Button ...
Zoey's mom here once again.Many,many thanks to Kele for Ella's new beautiful button.So hate that we even need one for the sweet little love but now that we have one,let's use it and get those prayers going and keep them coming!
*Hope I got this right.Thanks for all your offers of help.I am certain I'll be hearing from you all if it's not working.I am so very computer illiterate!!
*Hope I got this right.Thanks for all your offers of help.I am certain I'll be hearing from you all if it's not working.I am so very computer illiterate!!
It's Denise Finally With An Ella Update
Hello….this won’t be a very long post as it is late and I am looking forward to bed but I really wanted to get on here a say a few things. First of all……thanks so much to Heather for getting the word out there so quickly about Ella so that the prayers could begin ASAP!!! Secondly, I wanted to tell everyone THANK YOU SO MUCH for all of your support. I have to admit that I have really been pretty strong so far but one of the few things that has brought me to tears on this journey so far has been the OVERWHELMING support of my friends…..most of which I have never even met. When I got on the computer at the hospital this morning and saw all of your comments as well as how many of you did posts on your own blogs so that others could be praying for Ella, I wept. I can’t remember a time when I have felt such love…..thanks again.
Now for a quick update to Heather’s update. Since I last spoke with Heather, they decided to start Ella on chemo tonight!!! I guess she has some fluid around her heart and they are worried it could be leukemia cells and don’t want the extra fluid to cause her blood pressure to fall so they wanted to start the chemo right away to see if the fluid will decrease. If it doesn’t, then they will have to look at aspirating it directly. They have also decided NOT to put the broviac line in until after chemo is completed in 4 days unless a problem arises with the femoral line.
Surprisingly, I came home tonight. I hadn’t planned on staying in the hospital when I left my house on friday and therefore have some loose ends to tie up at home and also needed to spend some time with Abbey and Emma who hadn’t seen their mom in a couple of days. I asked the doctor when he thought would be the best time for me to come home and he thought tonight as she was just starting the chemo so there shouldn’t be much action. My mom came and stayed with her for the night. It was hard to leave her as she hasn’t wanted to be with anyone but me but I knew she had to get used to being with other people as I will have to leave sometimes and daddy is working tonight so it was grandma’s turn. She settled in for the night pretty easily so hopefully I will be able to rest peacefully tonight.
As for Ella, she is doing OK!! Yesterday, they sedated her to put in the femoral line, do a lumbar puncture and do the bone marrow biopsy. She has been really out of it since and pretty fussy. We finally figured out tonight that her bone marrow site is really sore. She wouldn’t sit up in her bed and we couldn’t figure out why until the nurse touched it while checking the bandage and she flinched. She definitely hasn’t been herself since yesterday and this was all since before starting the chemo so I am not sure if she was just starting to feel sicker or if it is just the repercussions of the surgery. All I know is that when I look at the pictures below, she looked just fine and healthy until we got into the hospital and they started messing with her. But we know this is all to make her healthy again so we will trudge along. And you have no idea how good it is to know that we have a village of people at our side. We have been blessed with visitors everyday so far and I hope that doesn’t change as I think it will really help keep my spirits up. THANKS AGAIN TO EVERYONE FOR EVERYTHING!!! Here are a few pictures of our journey so far.
Awww...a kitty cat!!
Someone is probably messing with her again...she is DONE
Now for a quick update to Heather’s update. Since I last spoke with Heather, they decided to start Ella on chemo tonight!!! I guess she has some fluid around her heart and they are worried it could be leukemia cells and don’t want the extra fluid to cause her blood pressure to fall so they wanted to start the chemo right away to see if the fluid will decrease. If it doesn’t, then they will have to look at aspirating it directly. They have also decided NOT to put the broviac line in until after chemo is completed in 4 days unless a problem arises with the femoral line.
Surprisingly, I came home tonight. I hadn’t planned on staying in the hospital when I left my house on friday and therefore have some loose ends to tie up at home and also needed to spend some time with Abbey and Emma who hadn’t seen their mom in a couple of days. I asked the doctor when he thought would be the best time for me to come home and he thought tonight as she was just starting the chemo so there shouldn’t be much action. My mom came and stayed with her for the night. It was hard to leave her as she hasn’t wanted to be with anyone but me but I knew she had to get used to being with other people as I will have to leave sometimes and daddy is working tonight so it was grandma’s turn. She settled in for the night pretty easily so hopefully I will be able to rest peacefully tonight.
As for Ella, she is doing OK!! Yesterday, they sedated her to put in the femoral line, do a lumbar puncture and do the bone marrow biopsy. She has been really out of it since and pretty fussy. We finally figured out tonight that her bone marrow site is really sore. She wouldn’t sit up in her bed and we couldn’t figure out why until the nurse touched it while checking the bandage and she flinched. She definitely hasn’t been herself since yesterday and this was all since before starting the chemo so I am not sure if she was just starting to feel sicker or if it is just the repercussions of the surgery. All I know is that when I look at the pictures below, she looked just fine and healthy until we got into the hospital and they started messing with her. But we know this is all to make her healthy again so we will trudge along. And you have no idea how good it is to know that we have a village of people at our side. We have been blessed with visitors everyday so far and I hope that doesn’t change as I think it will really help keep my spirits up. THANKS AGAIN TO EVERYONE FOR EVERYTHING!!! Here are a few pictures of our journey so far.
Ella weighing in at 24 lbs 9 oz at the clinic
before we knew this would be a long hospital stay :(
Getting comfy in the hospital bed while
watching Baby Signing Times
watching Baby Signing Times
Opening her first gift from my friends Margie and Mary
Awww...a kitty cat!!
Someone is probably messing with her again...she is DONE
with everyone touching her!!
Notice the petechiae (red spots) on her face from all
Notice the petechiae (red spots) on her face from all
the intense crying and the bruised arm
Hanging in there
Here comes the nasty stuff!! Notice Ella lying down in
Hanging in there
Here comes the nasty stuff!! Notice Ella lying down in
the background
YUCK!!!
Thankfully daddy remembered to bring her baby doll from
YUCK!!!
Thankfully daddy remembered to bring her baby doll from
home. Also notice one of the two beautiful blankets that
we have already been given at the hospital.
A Sweet Ella Grace Update From Heather ....
Denise has limited access to the computer there at CHOC.She has been able to jump on to the community computer that is available,every once in awhile.She can read comments but she is not able to post.She is hoping to have their laptop there sometime this week but again,that is a crap shoot as to whether internet service will be easily available in the room.So for now you'll have to put up with me.
First and foremost Denise would like to extend her heartfelt thanks and gratitude for the outpouring of love,support and prayers.Without it,she would be lost.
Speaking of prayers.A button has been made by the darling Presley's beautiful momma Kele but we ,or should I say I,am having a heck of a time placing the code within a scroll box.Everytime I place the code,the actual picture of the button pops up in the box.Frustrating.So if anyone can help a girl out,I would so appreciate it.Just email me or post on my blog.We really need to get that button plastered all over blogland to keep everyone focused on the task at hand:Ella's complete conquering of this beast!
As for Miss Ella.She is tired.These first few days are brutal.I remember them well.And when I say brutal I mean brutal on these precious children.It is nothing short of their tiny bodies being violated and assaulted.Sounds extreme I know.But it is just that bad.She finally has a femoral line as a go between till her Broviac is placed.This temporary line allows them to acess her labs and administer meds and removes the necessity of IV's.Which was getting pretty near impossible on the sweet little love.
The game plan as of today or as of this morning when I last spoke to Denise,is for chemo to begin sometime tomorrow.Denise's understanding is that they will begin chemo in that femerol line and still be able to take her to the OR to place the Broviac.That's where that stands at the moment but could change come morning.You can never be sure.Game plans have a way of changing when you are living in the land of unpredictable pediatric cancer.
Denise continues to sound really good.Tired but good.She has had visitors to pass the time and her mom,who was away on a trip, is now back in town. So that is a blessing.The biggest thing at this point,and it might seem strange to others who have not traveled this road,but the thing that weighs heaviest on you,almost in a weird way before the chemo regiment, is the ever nagging question of,"How are we going to logistically make this work?"Mostly the stress of figuring out a routine.Pick up and care of the other kids.Changing of the guard between mom and dad.How you even fit in a simple 5 minute shower and when will you cross the threshold of your very own home again?Just the reality of the fact that, 3 days ago life was "normal" and now,in a blink of an eye, this has become your "new normal".
That old proverb of "it takes a village to raise up a child" becomes a lifeline and I know for certain that the beautiful community of family and friends of the Vollmer Family will carry them through the months ahead.
That is all for now.I will get that button glitch figure out before long and post that code here and on Zoey's blog shortly.
First and foremost Denise would like to extend her heartfelt thanks and gratitude for the outpouring of love,support and prayers.Without it,she would be lost.
Speaking of prayers.A button has been made by the darling Presley's beautiful momma Kele but we ,or should I say I,am having a heck of a time placing the code within a scroll box.Everytime I place the code,the actual picture of the button pops up in the box.Frustrating.So if anyone can help a girl out,I would so appreciate it.Just email me or post on my blog.We really need to get that button plastered all over blogland to keep everyone focused on the task at hand:Ella's complete conquering of this beast!
As for Miss Ella.She is tired.These first few days are brutal.I remember them well.And when I say brutal I mean brutal on these precious children.It is nothing short of their tiny bodies being violated and assaulted.Sounds extreme I know.But it is just that bad.She finally has a femoral line as a go between till her Broviac is placed.This temporary line allows them to acess her labs and administer meds and removes the necessity of IV's.Which was getting pretty near impossible on the sweet little love.
The game plan as of today or as of this morning when I last spoke to Denise,is for chemo to begin sometime tomorrow.Denise's understanding is that they will begin chemo in that femerol line and still be able to take her to the OR to place the Broviac.That's where that stands at the moment but could change come morning.You can never be sure.Game plans have a way of changing when you are living in the land of unpredictable pediatric cancer.
Denise continues to sound really good.Tired but good.She has had visitors to pass the time and her mom,who was away on a trip, is now back in town. So that is a blessing.The biggest thing at this point,and it might seem strange to others who have not traveled this road,but the thing that weighs heaviest on you,almost in a weird way before the chemo regiment, is the ever nagging question of,"How are we going to logistically make this work?"Mostly the stress of figuring out a routine.Pick up and care of the other kids.Changing of the guard between mom and dad.How you even fit in a simple 5 minute shower and when will you cross the threshold of your very own home again?Just the reality of the fact that, 3 days ago life was "normal" and now,in a blink of an eye, this has become your "new normal".
That old proverb of "it takes a village to raise up a child" becomes a lifeline and I know for certain that the beautiful community of family and friends of the Vollmer Family will carry them through the months ahead.
That is all for now.I will get that button glitch figure out before long and post that code here and on Zoey's blog shortly.
Friday, May 7, 2010
This is Zoey's mom,hijacking Sweet Ella's blog ...
Well, we have a new warrior girl in town.Please head over to Zoey's blog for an update.
Thursday, May 6, 2010
Ella's Blood Is Back At It Again!!!
Uugghh!! I got Ella's blood drawn today for her "monthly" blood check. I was pretty sure that her platelets would be low (what's new) because she has had some petechiae on her face lately. But when the doctor's office called, they told me that her Hemoglobin was low now too. It wasn't as bad as it was back in November when she was hospitalized but it's low enough (7.8 when it should be at least 11.o) that she has to go in to the outpatient clinic tomorrrow (friday) for a blood transfusion. Of course since the November scare, I am always checking her for paleness but it is so hard because she is so fair to begin with. The doctor's assistant said that he would come and talk to us tomorrow while we are there to see what the game plan will be. I am sure he will want to do another bone marrow biopsy to see if any "bad" cells are starting to brew....ie: leukemia :( But the good news is that there weren't any "bad" cells in her blood right now. So for now we just pray that this is another quirk in Ella's blood. On a side note, her platelets were low (65 when they should be at least 140) but they were actually up from March when they were 58. This child definitely keeps us on our toes!! These pics are from today so you can see that she definitely has energy still and maybe looks a little pale....but nothing like the last time!!
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