We arrived after 6pm, just in time for shift change. Our first nurse was nice as can be and the next one was equally pleasant. I guess as pleasant as you can get at a time like this. I am overwhelmed with the love and support we've received thus far and we haven't even done anything. I know the words leukemia and cancer are super scary, but I guess I'm still in shock. There was a time I thought that learning my child had Down syndrome was the worst day of my life, boy was I wrong.
I wish I had more to update, but all I can say for now is that the resident doctor on duty tonight came and talked to us and gave us a game plan. Blood work tonight to confirm the labs done in our home town. (Wouldn't that be amazing if all the labs were wrong!!! Could I ask for such a miracle, okay, not likely , so don't really get your hopes up.) We went over her history, and she told us she'd like to get an iv in her tonight for fluids. Well....that didn't go so smoothly. If this is what the next year of my life will be like, I think I'd like run away temporarily. They spent a half an hour just checking out her limbs like a science project. Three nurses in there trying to decide what to do. They tried her left arm (right arm is bruised from yesterdays blood draw). After poking her and proding around for a couple of minutes (meanwhile she's screaming) they decided that wasn't working and pulled it out. So they put the band around her other arm hoping that the hand would work. But after freaking her out w/ that rubber band thing (she knows what that means now!) they decided that wouldn't work either b/c her arms/hands are so chubby it would be right in that crease on her wrist. SO....no other option except her feet...which would mean she couldn't walk, yeah right!!! I told them they'd have to sedate her to keep her from walking around, and that's NOT going to happen! So guess what? They drew the blood from the foot and no IV! They'll call in their vascular team in the morning. Will update when we get the labs back, hopefully soon. It also looks like the computer may be busy quite often, so if I don't post that may be why!!! Thanks for all your love and support, and especially the prayers!
Hello world!
3 years ago
23 comments:
Carey
What floor are you on. We want to visit when Jason gets back in town, he arrives at 8:30am, we would come straight there. So sorry things are not going the way we hoped. I hate iv's and the pain they cause our little ones. They tell ya to make them gain weight then they are so chunky they can't find a darn vein....uuuuuhhhhhhhh!
Can we bring you anything in the morning???
hugs and moochies to baby girl!
Love and prayers to all!
Micah
One more thing...are you guys downtown???
Some hospitals have an IV team. Ask about it. Also, ask if they have an idea how long they think she will be admitted. Maybe she could get an access like a PICC line or a central line if she will be there awhile. This will allow her to get what she needs and get blood for labs as well. I hope that helps. God bless. Wouldn't it be wonderful if it all came back okay? Miracles do happen. I'll pray for one for you all.
Carey, Ryan & Logan:
Your dad called me tonight to tell me about Chelsea. I am so sorry that Chelsea will have to go thru this hell. Be strong for your baby girl.
We love you very much. Call if you need anything.
Aunt Sue, Uncle Dave, Brianna, Travis & John
Carey ~ which hospital and what floor are you on? Might want to let everyone know that. I responded to your e-mail but also wanted you to know that I have you all in my prayers! I know you have the strength to pull thru this ~ so keep the faith and keep a smile on your face for Chelsea!! She is ONE tough little cookie! : ) Call if you need ANYTHING! 913-709-1098
Love to you all!
God Bless ~ Jacque
We are friends of Micah and Jason. Our daughter is Isabella. I just wanted to let you know that you are in our thoughts and prayers. She is such as beautiful baby girl!!
Megan, Matt and Isabella
Carey,
We are all praying for Chelsea and your family. Anything you need just ask the board ... Hugs to you all from Orlando..Tracey-Conor's mom (T21 online)
Oh Carey, I received your email and then jumped right to your blog. I am so sorry to hear you are going through this. Please know that Chelsea and your entire family are in our hearts and prayers. This is going to be rough no doubt but with the love and support you have from your friends and family (including those of us in your virtual T21 family) you WILL make it through this!
Much love
Julie, Mom of Emily
t21online
Dearest Darling Chelsea.......you are being kept close to our hearts in positive thoughts and prayers.
We pray that you don't have to make this journey....for a miracle that the labs were wrong, but at the same time knowing that if a miracle can not happen at this point, that it does quickly in your journey that you are healed soon.
Carey, our hearts are breaking for you and your husband as you sit by and watch your precious duaghter. I can not imagine the fear and uncertainty you have, let alone that lost feeling like tonight watching them try to get the IV in. You both are amazing people and fantastic parents and Cheslea will feel your love and strength every moment of this journey.
All of our love and support.
Peace and love, Tara Marie & Emma Sage from Trisomy21Online
Remember when the world looks harder than you can handle and you want to run away don't feel bad about that, just put your trust in God and lean on those that love you. We are all here praying and waiting for word of how we can help so don't hesitate to ask.
You will get through this and we are all here to help. There is love for you all over the world now so feel its strengh and hang in there.
Love to you all!
Carey,
I wish I could do more for you than just cry. You and your angel baby are going to be in my prayers non stop, I promise! We love you guys honey and are here to offer whatever help you need.
Love you! Nicole
Many prayers go out to you today! I too would ask about a PICC line or a port.... much easier on the babes!
I know Chelsea is in good hands and lots of people love her and are praying.
Anything you need, please ask!
Starting the prayer chain here for Chelsea. HUGS to you guys. Will be checking in and thinking of you often.
Oh Carey, my heart is breaking for you right now. I hate that this is happening. You are all in our prayers. Give Chelsea big hugs for me. She is such a sweet little girl.
Carey and family -My heart goes out to little Chelsea and you. I can't even begin to feel what you and your family are going through. I just wanted you to know that you have many people in Philadelphia praying for Chelsea. I'm a cancer survivor so I can relate to the shock, fear and being darn right mad. I can't even begin to express with words how sorry I am that you are beign faced with such a horrible illness. Chelsea is a fighter, I can see it in her beautiful eyes. I'm praying for comfort and a speedy recover.
Terry- Noah's Mom
Hi I know you dont know me but I'm one of Micah's friends. I just wanted to let you know that your family is in my prayers in this time of need.
May God bring you strength.
-God Bless
Dana Sue Jones!
I didn't realize who you were from you email this morning as I had cleared my addy book accidentally . . . finally after thinking about you and Chelsea all day I realized. OMG I JUST MET YOU LAST SATURDAY IRL!! No wonder you've been in my thoughts all day, my subconscious must've known when my brain was not working. I'm just devastated for you. I live in town, go to CMH all the time. Let me know if you need anything at all!
Love and prayers,
Katy & Sebastian
Thinking about you guys and sending prayers your way! Kayla sends hugs to Chelsea!
Carey, Ryan Logan and Chelsea
You've all been constantly in my thoughts and are in my prayers. It's heartbreaking that little Chels will have to get used to all the pokes and proddings, everything that goes along with fighting this good fight. I surround you all in long-distance electronic hugs. I wish there were more I could do. If there's anything at all that you need, let us know. I know that sounds so empty and cliche' but it's true. You are such a special family and Chelsea is so lucky to have you all.
I send you all the spiritual strength I can muster and pray that you are carried on His shoulders during this trying time in your lives. Know that you are all loved.
I just blew kisses in the wind in the direction of where you are. Sleep tight sweet baby girl.
Kitty, Nathanael and the whole kit-and-caboodle
Carey, Ryan, Logan, and of course, Chelsea,
You have definitely been in our thoughts and prayers since you called on Wednesday.
Know your Capper friends are praying for you all. Consider yourselves hugged...and let us know anything we can do for you.
Kim
We saw your blog posted to Big Blueberry Eyes and wanted to tell you your precious, precious Chelsea is in our thoughts & prayers. We hope the tests are wrong. Stay strong through this difficult time. My heart aches for you right now but I know the power of positive thoughts. God bless!
Robin
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