Hospital Update Day 5

Tuesday, January 26, 2010

Hospital Update Day 5

(She wanted all her lady bug barrets in her hair yesterday)

Ivee is scheduled right after Dr. Martino's 8 am in the morning. So, I think she'll be in surgery around 9am. He said it should only take about 30 minutes, but with anesthesia, I'm assuming she'll be back there around 1 to 1.5 hours.
Emmett is sick with the virus this morning. Praying he gets over it quickly and I don't get it. It has been a 24 hour bug, so hopefully he'll be fine in the morning. I have been around my girls when they had it, and I did fine. Hopefully my body was already immune. Thanks for the prayers. God has always had a reason for everything that has happened with our baby girl. We feel that no less this time. Our specific prayer is that He wants that shunt out and doesn't want another one in her! We pray her brain has healed and will do just fine absorbing the csf on it's own again.

4 comments:

Anonymous said...: Hey Hope, I love seeing Ivee with all her ladybug barretts. That is my nickname for her "Ladybug". I will be praying for Dr. Martino and his team tomorrow morning at 9:00 a.m.. I am already praying for your strength and too for the virus to leave Emmett. Thanks so much for keeping us posted on everything so we know how to pray for our little miracle. Yes, I agree, God wants that shunt out and doesn't want another one in her! I agree in prayer with you on this. Too, I am praying for her little brain to heal quickly.

Love ya'll very much!
Beth Pinyerd; Tuesday, January 26, 2010 3:03:00 PM
LINDSAY said...: Hope,
You are all in our thoughts, our prayers. I hope that, as you said, this turns out to be a blessing and she can in fact live shunt-free!!! I didn't even think that was possible once a shunt is implanted, so I'm pleasantly surprised that they want to try. (Yet another way that your life gives me hope for Matilda!) Keep us posted, and we'll keep praying for beautiful Ivee and her family!
God Bless!

Lindsay (Matilda's mom); Wednesday, January 27, 2010 10:23:00 AM
Anonymous said...: Hope,
I am praying. May God bring complete healing to Ivee. She is so cute in her lady bug barretts. Please give her my love. I pray Emmett is better and you do not get this bug.
Much love to all of you. Love, Anna; Wednesday, January 27, 2010 5:51:00 PM
Anonymous said...: Hope, we are praying for all of you. Your family is precious to us.
Love, Kim F.; Wednesday, January 27, 2010 8:32:00 PM

Ivee's story in SHORT...As if....

Ivee is a tough little girl. And with our help and by the grace of God, all will go well. We pray for a complete healing, and we know that our God is big enough...He is the Great Physician.

Story: On a routine Monday, December 18, 2006. I was missing work and taking my oldest daughter to the doctor cause of a stomach virus. Stopping at a grocery store on the way, I left the oldest in the car for a moment and ran inside with Ivee. I put her car seat on top of the grocery cart as so many of us mom's do. Leaving the store, I turned for a brief moment to throw something away. I turned around just in time to see the entire car seat fall face down on the concrete. I flipped, as any mom with a 7 month old falling face first would do. I arrived at the ER in record time. She already had a huge knot rising on her forehead. As they (eventually) started a CT scan, I felt God speaking to my heart. In all but audible words he told me she would be fine, but that we would find something else, that this was why she had fallen, so He could reveal it to us. So, as I watched from the tech room, I saw something that even to me, a non-trained observer, knew was not suppose to be there. A friend of mine was the radiologist there, and he confirmed, also by doing an MRI, what I suspected. I was at peace in spirit cause my heart had been prepared...but not okay. My husband was working out in Texas and would have to drive more than 7 hours to come home, not knowing what was happening, but just that she fell. Ivee was transferred to a local children's hospital in Mobile. That night, Dr. Martino consulted, and would run an MRI the next day of his own, and perform surgery on that Wednesday. On December 20, after 5 hours of surgery, all was successful, and Dr. Martino removed 98% of what he knew was an egg sized malignant tumor, later diagnosed as Stage 3 Anaplastic Ependymoma. The remaining 2 cm was on her artery next to the spinal chord.

Deficits from initial resection/treatment: Ivee had many deficits due to the tumors removal, even though he was able to leave her nerves in tack. Her right eye was severely crossed. Her vocal chords were paralyzed (left has regained use). Her hearing was affected (loss at 2000 hz and high frequency sounds). Hearing aids received June 6, 2012 at age 6. Have already hear improvement in F, S and ending sounds in 2 days time! Her balance was never truly restored, and she has left side body weakness. After 30 days (including Christmas) we were allowed to take Ivee home. She had 6 months of chemo and then 33 treatments of radiation at St. Jude.

Procedures/surgeries:

1.) Tumor Resection (12/06) – Anaplastic Ependymoma

2.) Gbutton placed for eating. (01/07)

3.) Nissen fundiplication pyloroplasty done (wrapping of throat & stomach) (01/07)

4.) Chemotherapy Begins (01/07)

5.) 5 central lines placed (many fell out on their own) (01/07 – 05/07)

6.) Port placed at St. Jude (06/07)

7.) Chemotherapy ends (06/07)

8.) Radiation (06/07-08/07)

9.) Rare scar tissue formation in the brain removed (09/08)

10.) Shunt Placement (10/08)

11.) Shunt revision/replacement (02/10)

12.) Hip Displaysia surgery – Dega Osteotomy {Not tumor related} (10/10)

13.) Reoccurance - GTR {Gross Total Resection} (02/11)

We were shocked (as was the doctor) when her Jan. 2011 scan showed a reoccurance. It was on the same artery where the orginal tumor was left behind. GTR was done on February 18^th with much success. 2^nd dosing of radiation began March 28 and ended May 6, 30 doses.

14. Begin 2nd dose radiation on March 28 (30 doses) Ended on May 6, 2011.

Improvements:

1.) Right eye is still weak, doesn't require glasses yet. Patching the good eye to strengthen the right one.

2.) Right vocal chord is still partial paralyzed. In Fall of 2008 , to the doctor's dismay, discovered she has received movement again in right chord (update: Since resection in 2/11, Right vocal chord is completely paralyzed, no movement now)

3.) Still G Button feed. Cannot eat much by mouth. She doesn’t have the drive to try to eat, but we are treating her with an appetite enhancer. She has been approved through Modified Barium Swallow Test.

4.) Balance is still and issue. Has improved over the years. Uses a walker and wheelchair.

5.) Has learned to stand (assisted) for a few moments by herself and take some steps/usually across a room (May 2012). Uses a walker VERY WELL!!

6.) Currently watching a paraesophageal hernia of the fundoplication. No surgery required at this time.

7.) Non-cancer related surgery due to hip dysplasia in Fall of 2010. Has improved her balance and slipping out of socket.

Currently:

She is doing very well! She attended K5 full-time with a personal aid (might repeat K5). She is very smart and attentative. She used her walker often throughout the day and is learning to take independent steps. She takes a little bit of something to eat everyday now instead of once a week! She has learned to drink larger portions at a time. Enjoys Hippotherapy (horse therapy). Is extremely observant, caring and just down right funny!

The Foley Family - Trusting in God at ALL Times!!!

About Me

Tuesday, January 26, 2010

Hospital Update Day 5

4 comments: