I sure never would have thought that I would be saying the words....."I can't wait until we can get back to doing JUST the chemo". But right now that is how I feel!! All of this other crap seems so much harder for Ella to take. About 11am this morning, they extubated her (for you non-medical people...took the breathing tube out). She had this tube in for almost 24 hours and it really irritates your upper respiratory system. Well the swelling combined with Ella's small structures due to having Ds, have been making it very difficult for Ella to get her breathing back under control. She sounds very course and at times her oxygen levels would get too low. They decided she needed some extra oxygen so put a nasal cannula in. I thought "wow, now Ella gets to be like many of her other friends with Ds". But Ella was having none of it!!! We would put it in her nose, she would pull it out...in, out, in out. Okay, this game is getting very old!! Next they went to a little mask, you know, the kind they have on airplanes.....Yeah right!!! Like that was going to stay on. But she needed some sort of oxygen because if we let her be, her numbers would start to drop and that wasn't good for her. They finally decided that she would have to go on the Bi-pap machine which has a BIGGER mask that really attaches to your head and actually forces air into your mouth. SHE... HATED... THIS... THING!!! We literally had to stand there and hold her arms away from it until she settled down. Then she would startle herself, wake back up and start grabbing at it again!! Then we would hold her hands until she settled down again. This was going to be a VERY long day!!! They tried a few different sedations. Do you think those worked on our sweet little girl? Nope...not at all!! I think the only time she would finally fall asleep was after the Benadryl. So here she is with an irritated throat, air being forced into her face (think of a fan constantly blowing on your face at close range) and last but not least a tube sticking out of your chest, that hurts!! It's no wonder that she was completely irritated all day. The plan is that they will most likely take the chest tube out tomorrow if no more fluid accumulates around her heart and then hopefully overnight she will get her oxygen under control and be able to take the mask off. I believe that the world will once again be right for her if she could just get rid of those two things.
I am sure that tonight is going to be a tough night, especially if she keeps waking up and getting agitated. So where is this Mother of the Year???? At home!! Yes, I left daddy to care for the little Angel tonight. Afterall, it was his turn. Does that make me a bad mom and wife? I hope not. Please, please, please pray for some comfort for Ella tonight. Pray that we can get all of these extra tubes out so we can leave the PICU and return back down to the oncology floor and get on with this first round of chemo so we can get Ella's body cancer free!!!
Here are some pics from yesterday that I couldn't post away from home as well as some from today. Hope they aren't too graphic for those of you who are queasy. Thanks once again for all of the great support. Every time I log on and check email, I am truly blown away by the love that you all are showing us during this very tough time.
Happy with just having chemo...about an hour
before all hell broke loose yesterday!!
After the chest tube was put in and still intubated
Close-up of all the tubes
Now wouldn't you be uncomfortable if you had this big
mask on your face, blowing air???
42 comments:
Oh I can't even imagine how completely crappy she must feel. Praying praying praying.
Poor Ella...I hope tomorrow is a better day! Get some rest momma...You are a terrific mom BTW!
Oh Denise, I can't see that sweet girl with those tubes. Praying she gets some comfort. Mommy you also take care of your health.
Love to Ella and your family
I hope today goes smoothly and Ella gets to leave the PICU! I love the first picture of her sweet smile, I have been missing it.
Oh my goodness! What a day! I hope that today will be better and that you were able to get some rest. Give Ella hugs and kisses from us!
Oooh, poor baby. You are all in my prayers.
Poor, sweet little pumpkin! You are very WISE to take a night off. You'll be better able to care for Ella if you take care of yourself! Don't feel guilty.
It was hard indeed to see those pictures with all those tubes coming in and going out, so I can just about imagine how hard it must be for you and how much much harder for our little angel, hey I can't blame her for pulling them all out! I pray she doesn't need them for much longer
Denise I have Ella in my prayers and my constant thoughts during the day, today I took Saira for a swim and there I was in the pool thinking of Ella and praying for everything to be just fine. Everything is going to be alright. You have a fighter on your hands. And no you're not a bad mom, you are a blessed mom and wife to have a great hubby who is there to stand by your side and do his part, and you are a wonderful mom for staying so positive, you have no idea how much that will help Ella.
Now when you get to the hospital give that precious little thing a big kiss from me, and hugs to you. Remember we are all thinking and praying this end.
We are thinking and praying for you all. I told Dakin that Ella wasn't feeling well and that he needed to have a chat with whatever angel he does his celestial business with. He told me he would. :)
I got him to say her name too. It's the first name of a person he's been able to say...it's really cute.
Anyway...thinking of you.
We're praying for Ella and your family that God would heal her quickly! Those pictures seem so surreal with all those wires and tubes! Poor poor baby. Big hugs to you!!!
Many continued prayers. Both times when Aubrey was in the hospital and then home with oxygen she pulled at it, but eventually, when she only needed it for sleeping, we did a blow by. We would crank the oxygen and surround her with it! I taped it to an animal that we kept close to her face and this seemed to please all parties:)
Just so that you know and maybe other can be made known, it seems like when you do updates from the hospital, it doesn't come through on my reader, no update for me. So when I got this one, I had to scroll down to see what I had missed. Not a big deal, but people might just want to check your site more frequenetly for updates instead of waiting on the readers.
Pictures: I think they are helpful and those who haven't gone through it, will appreciate knowing about it if they ever have to. I know I appreciated those who posted heart surgery pictures. It made it less scary when the time came for us.
Good luck today!!!
Praying for you and for sweet Ella!
I feel so bad for Ella! She is having to put up with so much. Continued prayers for her and your family.
Denise,
I truly hope you know that you ARE the mother of the year. I'm sure your older girls loved having some time with you, and I second what Tina said about having a wonderful husband to do his part. We are praying always for Ella and all of you.
Oh, poor girl! I hate to see her like that! I can totally relate to your frustrations! Gavin HATED those masks and CPAP! He fought till the end and it made for exhausting days and nights in the hospital! One day, I totally lost it and told them...ENOUGH! He is fighting so hard with this mask on that he will never sleep and rest and then he won't be able to heal! They put him back on nasal canula and he tolerated this a little better....we had to keep putting it back in his nose, but at least he got some rest!
I am so sorry that you and Ella are having to go through this as well as the chemo! And, I've heard that chest tubs are very uncomfortable! Poor sweet girl!
It's a great sign that she's a fighter though! Keep fighting Ella! Love, Hugs and Prayers!!!
Praying today is a tube free day and you can't get back to just chemo! I know that sounds so strange!
I'm glad you went home, you need to switch off, and the other girls need you too. I hope they are doing ok. I'll check in later and hopefully tubes are gone!
Sorry that the past couple of days haven't been very good ones. But if anyone can fight and concquer, it is Miss Ella. Our kiddos are fighters by nature!
Denise, knowing when to get some much needed rest for yourself, is GOOD for you, Ella and the rest of the family. Kudos to you and your hubby for sharing the duty. "ALL" of your girls need to have mommy AND daddy around.........especially times like these! Now I call that, "FAMILY" of the year:)
We will continue to pray for Ella and your family and we are sending lots of positive energy your way!
Hoping Ella will be resting comfortably in her own bed SOON!
Sending love and prayers constantly.Thinking of you all constantly... must me why I call all the time!Feel free to press ignore when my number pops up!
I swear,these first few weeks are like no other.Kristen's mom said it right:pure hell.I remember that once we got into the groove of round 2 and 3,that we would see a child in the hallway,just look at their faces,their puffy eyes,their bruised little arms and it was no doubt they were new diagnosis'.
Hate that sweet Ella has been initiated into this club.Wish you could defer membership.So ironic,but not in a funny way,that it was exactly a year ago that you and Ella were visiting Zoey and I during Zoey's last round ...
Love you guys and proud of ALL of you.
You will all find your way ... with Ella taking the lead.
Oh that breaks my heart. I can't imagine what you are going through right now Denise. We are praying for you.
Sweet Ella -- it pains me to see you this way =( I am praying that you can lose all the extra tubes soon.
And Denise, I am praying for you as well...for strength and patience and peace. I imagine it is difficult at a time such as this to understand why God has you on this path - but His plan is perfect.
Give Ella a hug for us...or a big wet sloppy kiss from Anna would do, too! =)
I hope today is a MUCH better day for all of you. Hopefully you got a good night of sleep and enjoyed spending a little time with your other adorable girls. I can only attempt to understand how hard this is on your entire family and I pray that things start improving quickly. Heck, with as much love, prayers and support as Ella is being given how could it not! She is one blessed little girl.
Big hugs for both of you!
Thinking of you and your sweet girl! It's too bad they couldn't just have put the mask around her neck with the oxygen set on a higher level instead o the Bi-pap :-( hope today gets better!
Hate seeing your sweet girl like this :( Praying for you all...alysha
I would be pulling that thing off too. Praying that everyone gets some rest. It would be so hard to try and make sure everyone's needs are being met.
Oh sweet Ella...we are praying for you and hope you get those tubes out soon. Hang in there!!
Lots of prayers coming your way. I can't imagine what you are going thru as a mother watching your baby go through all of that. You are so lucky to have a husband that is such a good dad that you can take some time to rest so you can have the strength to do it all again tomorrow.
Denise, I can TOTALLY relate to the bi-pap struggle. Chloe used to be on the cpap which is basically the same thing. she felt like she was suffocating. It was so horrible. I can picture the whole scene with poor Ella! HUGS to you both! Certainly traumatic.
thanks for sharing the pictures. It helps me to have images of her to hold in my heart. She's a strong girl who has a strong family standing along side her. And of COURSE you're not a bad mommy for leaving her. This is a LONG road ahead, a marathon, so to speak, and you need to pace yourself. You'll have plenty of nights by her bedside, as will her dad. You are both/all amazing.
love from the East Coast.
Praying hard for all of you. So sorry that all these other things have gotten in the way of her treatment. Hoping today is a brighter day and you are out of the PICU! You are a great mom, you have to take care of yourself and spend time with the other girls too.
Love, hugs and many prayers to you!!!
Ughhhhh...I'm crying here. It just breaks my heart to see your little angel hooked up to all that junk. Thanks for including the picture of her cute little grin too. Oh sweet Ella...I'm praying for you, little love!
Denise those pictures are heart-breaking. Seeing any of our little ones that tubed up is so hard.
I hope that she is doing better today, and you can get back to "just chemo".
I'm here when you need me!
Oh Denise.......I am so sorry you are all going through this! We have been out of town so I have been not been able to get on my computer to let you know we are praying for sweet Ella Grace! Sending love your way from just down the 405 ;).
Our family will br praying for Ella. I am always happy to help with the big girls.
things are so much harder when they don't understand what's going on and you can't explain it to them. sweet little ella grace. we love you so much and are praying so hard for you.
What a horrible day - poor Ella! I'm so glad you are able to go home and get a bit of rest. It's so important to take care of yourself too! I think you are an amazing Mom!!
I am praying that Ella feels better soon. Only a few more days until we get to see you!
Poor baby! You definitely did the right thing, you HAVE to take care of yourself during all of this. Scott and I always tag team hospital stays, it's the only way we can stay alert enough to care for Addy! LOVE YOU ELLA!
You are tired, you need to rest. You are doing the right thing going back home. We will keep prayer for Ella and you guys.
Look after yourself so you can continue to look after your baby girl :) Hope the tubes are out of the way soon.
We are praying for better days for you all!! God bless your family! Love, Colin's Nana
Awww, those pics are making me cry. I hope tomorrow is a better day.
And I think you are very wise for taking some time off. Get some rest whenever you can. Hugs!
ella is so beautiful. i hope the tubes come out very soon and it is just chemo. i hope you get some great rest tonight. you are a great mom! xoxo
Poor baby. That would be awful, I pray that the tubes all come out tomorrow. Get some rest!!
Oh Ella, I hate that you have to go thru this. I am thinking of you:)
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