This is a long one and it will share the whirlwind of the past two days.
Thursday 3/29/18
We made it to the doctor first thing Thursday morning, after multiple delays and a 1:30 am arrival. With only two hours of sleep, I kept thinking “after this appointment we will grab lunch and take a nice nap before our flight out.” So I thought.
After meeting with the pulmonary NP, nutritionist, physical therapist, and pulmonologist they requested an immediate admit into the hospital. My stomach fell. They were very concerned with Charlotte and her “baseline” (her everyday normal). With how hard she works to breathe, her respiratory rate ranges from 40-60 and the way she breathes with her stomach, chest, and throat. She showed high CO2 in her blood, clubbing of her fingers, and flaring of the nostrils with each breath.
I caught Tyler up on what was going on and we agreed being admitted was definitely the best thing for her. She will be inpatient for 2-3 weeks at Children’s Hospital of Philadelphia. Shortly after agreeing, I received a call letting me know the ICU would be a better fit for Charlottes condition.
Another pit in my stomach and multiple questions ran through my head. The number one question being, “Why hasn’t any of the other doctors seen this?!”
The team and hospital here have been amazing! We are grateful that Charlottes condition is being taken seriously, that they are determined to find relief for her!
Of course, coming here, packed for 24 hours is tough but thanks to family and friends we can make it work!! I wasn’t sure how sleeping in the ICU with a 10 month old and the machines beeping would be, but lucky for us, along Charlottes journey we made a friend for life. One of Charlottes nurses from NYC lives nearby and she showed up and allowed me some rest and much needed sleep. I am forever grateful for all she has done for Charlotte and myself. Charlotte said it has been her favorite part of this trip so far.
Friday 3/30/18
Today they decided to go ahead and squeeze Charlotte onto the operating room list. They wanted to get a bronchoscopy sooner than later. Because she was an add on, there was not a specified time for the procedure. The only thing known was she would need to be NPO from midnight on.
One of Charlottes things right now is using water as a comfort. It helps to suppress the cough she has. She hates coughing.
Well, she wasn’t allowed water and boy was she angry! 9:00 came around and she started telling me how hungry she was. Then 10, 11, around 12 the respiratory therapist came by to try to get her comfortable with the bipap mask. That was AWFUL!! She hates it and on top of that she was hangry!! I haven’t seen her fight so hard. And while I had to be stern with her, deep down inside I was grateful for the fight she still has.
Charlotte was not taken down until 5pm. She was upset, angry, hungry and thirsty. She finally gave up. She sat with her head down, staring at her fingers. It was absolutely heartbreaking. I tried not to let the tears flow in front of her and I managed to wait until I left her in the OR.
Hadley and I waited in the room for Charlottes return. The doctor came in to let me know the procedure went well and they would test what they got. Shortly after, the nurse came in and let me know that she would be coming up intubated. I was ready for it, but then she arrived with her eyes taped shut and it was a little disturbing for me.
As they were trying to wake her, her carbon dioxide levels were in the 90s and she was coughing a lot. They wanted to try and regulate her CO2 and decided to keep her intubated. As the sedation began to wear off, she was trying to pull at the tube down her throat. When they held her down to suction and try to get her medication correct she was so upset. She was coughing but because of the tube it looked as though she was choking. She was kicking and trying so hard to break her arms free.
This happened multiple times and they finally tried some different meds. She has calmed down and is still intubated.
I just sit here watching her. Praying that she can be better. Hoping that one day soon, her health will be restored. There is no doubt in my mind that she should be here but this is tough!
We will be at Children’s hospital of Philadelphia for the next 2-3 weeks.
Please pray for:
- Peace for Charlotte
- Strength and perseverance to get her through this treatment
- Answers
- Peace for her family
- Charlottes miracle
Praising God for:
- The opportunity to be here
- The team of doctors and nurses
- Family and friends
- Charlottes miracle
“I wait for the LORD, my soul does wait, And in His word do I hope.”
Psalms 130:5 NASB
Helen says
Prayers for all of you continue daily.
Tandra says
I am so sorry!! Please let me know if I can do anything! I am praying everyday for her as well as all of you!! ❤️❤️❤️🙏🙏🙏 you guys are such wonderful and caring parents!! Stay strong to your faith!! 🙏🙏🙏
Tracy Fairhurst says
Prayers daily for this sweet little girl as well as her strong parents!
Jane H says
I pray for your sweet girl daily, your family and the hands that take care of her.
John says
We are praying. Love you guys
Christine Langham says
Poor sweet💖 I’m so sorry what she is going though, you also. Stay strong momma. Oh dear Jesus please heal Charlotte my heart brakes for her. You do Miricales please stop her suffering.✝️🙏🙏🙏🙏❤️
Rachel says
Big hugs & continued prayers. We love you guys.
Veronica Russell says
My heart breaks mixed with tears and much gratitude that Charlotte has such a warrior spirit. God has this little one wrapped tightly in His arms. Prayers that each and every person that sees and hears Charlotte’s story will take from her what God wants us each to learn. My biggest prayer continues to be Charlotte’s Miracle. May peace be with you sweet girl and York family 🙏🏼😘
Diana says
Loving you and Charlotte through Jesus and asking Him for rest and peace for you both. Love and prayers from Redmond Community Church
joy baker says
Praying and praising the Lord for both peace and healing for Charlotte and the family. God must have something very special for all of you. So hard to wait, but that’s what His word tells us to do. In His precious name, Joy Baker
Heidi Peek says
Continued prayers for Charlotte may God wrap his arms around her and heal her.
Lena Norton says
Oh my goodness how awful😔poor little sweetie. Praying for strength for her and for you. Praying for her miracle. You all hold a special place in our hearts. Please Lord Jesus, heal Charlotte. This is enough.
Sharon Catania says
Oh, my, what a trip you all have had. So glad to know she’s where she needs to be, but I am sorry she has had some struggles with hunger and discomfort. And so relieved that God’s angels are always reaching out to you to help, be it your family or a nurse. Thank you so much for the update. Our prayers continue for Charlotte, you and your family.
Lynn Larkin says
Sending all my thoughts and prayers to you and Charlotte and your beautiful family. She’s a fighter… I have faith in her ! She’s not giving up. 🌸💜🌸
A Blessed Easter to all of you,
Lynn Larkin
Jen Garbett says
Praying for your sweet baby girl and for your broken mama heart. What a resilient family you all are. I’m so glad you are at a place that have treatment options to hopefully heal her. I am so sorry for what she continues to go through. You are in my prayers.
Marie says
Praying for peace and healing. “By His stripes we are healed.” Love and prayers!
Andrea says
Praying always for sweet Charlotte and for your family.
Angela Schlabach says
I just keep praying for your sweet Charlotte! Poor thing has been through so much. Hang in there mom’s, God is good! Thank you for the updates, I’ve been following this story all along!
Terri Jordison says
As tears are flowing reading your post I am praying so hard for all of you. I know these feelings all too well. As a mom it is terrifying. Sending big hugs and prayers that Charlotte’s miracle comes soon.
Shelly says
Wow! What a battle this beauty is fighting! My prayers are for each of you. May God restore her health so that she can still enjoy some of her childhood! You have done an amazing job of trying to keep things as normal as possible under the circumstances. Father God, Hear our pleas. Hugs to all of you.
Yolanda Banks says
I’m just seeing all of this !!! Praying for Charlotte ! Momma praying for your strength.
We’ve been traveling since March 23rd out of the country. Returning April 2nd in evening.
We don’t live far from chop. As soon as I get back to philly . I’m coming to help you ….
hang in there.
Love
Yolanda
Sue jantz says
I hate this for you and for Charlotte!! I want to tell God how unfair this is and then I remember His son and how He suffered the ultimate unfairness! Praying for sweet Charlotte today and the God of all comfort !!
Susie Dowding says
So grateful you guys are there and Charlotte is being taken care of. Asking God to give you all some relief. Prayers and tears. 💜
Alexis summers says
The summers family will be praying for your sweet girl and family ❤️
I’m so sorry you are having to go through this. love you guys.
Tami Bernard says
Honestly, I am so angry right now that it took this long for Charlotte to get the medical attention that was obvious to to us that she needed. Thankful that she is getting help. So grateful that you have a dear friend in this new location. Praying for strength, peace and clarity for you, Jacqueline. You are exactly who Charlotte needs. Praying for Charlotte, for healing, peace and calmness to endure incubation. Love and hugs from Oregon.
Brandee Kliewer says
Poor, sweet Charlotte. I am praying with you Jacqueline.
Dorothy says
Continuing to pray for Charlotte, what an ordeal for her and you. I pray you will get the answers you are looking for and that God will heal and restore her precious little body and soul!🙏💕🙏💕
Renee Price says
My heart aches for all of you! How scary for her, and you having to watch her fear and pain. May you all feel the Lord’s arms of comfort.
Praying for an Easter Miracle!
Renee
Rick Hale says
I am so sorry you are having to go through this difficult situation. Please know we will keep you and your family in prayer daily. God bless you all.
Kimberly Ullmann says
Words cannot express the sadness I feel for Charlotte and your family and all you have endured. I pray daily for her healing and for strength for all of you. You are an amazing mama. I know God hears our prayers and he will give you strength but most of all I WANT CHARLOTTE HEALED! I will continue to shout it from the mountain tops until it comes to pass. May God continue to wrap his arms around you throughout this journey.
Summer says
We are constantly praying for you guys!!
Melissa says
Many prayers for you and your baby I know this has to be hard I watched my dad go through something similar. Prayers for strength comfort and healing in Jesus name Amen
Sylvia Arlene Hargrave (Leetch) says
Luke 22:42 “Your Will be done”
Sylvia Arlene Hargrave (Leetch) says
Thank you Jesus!
Julie Watts says
Praying . . . Jesus be present and bring rest for everyone.
Linda Graham says
Through tears and a lump in my throat, I ask God to hold you as only He can do, and that you will sense His presence there with you.
We can’t understand—but this one thing I do know—He loves you and precious Charlotte with a love we cannot comprehend.
🙏
angela says
jacq, you constantly amaze me. your strength, patience, hope in the LORD, it’s just such testimony. God is faithful, and we know he will never let you down. keep going, one foot in front of the other, just like you are. we are believing with you for charlotte’s complete healing!! God is amazing, and so you are you!