Friday Update

Friday, January 29, 2010

Friday Update

Em gave me a break last night. I got to go home and take a much needed shower, and then sleep in my own bed. Unfortunately I forget to turn his alarm clock off when I go home. Her heartrate started to fly up again this morning after I feed her and gave her bolis meds, and she was attached to her IV fluid meds. We quickly counter acted it with more fluids. We didn't let it get above 170 this time. Still uncertain as to why she is doing this in the mornings, and not in the evenings.

We have one of our favorite nurses today, Kelli. She was with us from the start of this whole thing over 3 years ago.She was the first to try to get Ivee to eat after her tumor resection. She and I relived the moment this morning. I told her, "I remember when you tried to feed her, you looked back and me and just shook your head." She said, "I know. I remember it. It just broke my heart that she was like that. And I hurt for you guys!" It is great to see so many familiar faces (nurses and doctors) who have come in to see her. They are just amazed by our tough little angel! They just can't believe it has been that long and that the baby they knew 3 years ago and had such a hard time is now almost 4 years old and doing so well. Em and I know why though. To God be the glory!

2 comments:

Anonymous said...: Hope, thanks so much for keeping prayer warriors abreast of how Ivee is doing.I am glad you got to go home and sleep. Sleep also is such good medicine as well. I hope Emmett is feeling better after the virus and still praying you don't get anything. Ivee is a miracle and it truly amazes me how she has made the best out of everything with her smile. She is truly a gift to the Foleys and a gift to everyone she meets. Hope I will be praying that you have a good weekend and that you get some rest with the rain and too get to stretch and rest by your little girl.

With Christ's Love for His young sheep,
Beth Pinyerd; Friday, January 29, 2010 8:47:00 PM
Anonymous said...: Oh these shunts can test one's patience. It would be wonderful if she didn't have to have it at all.
Our Johnny is back in the hospital with a possible shunt infection. He was admitted yesterday (Friday). I know Jennine hasn't had a minute to put out an update on caringbridge-he's on antibiotics - keep him in your prayers. I'll be anxious to read your next update - my prayers continue. from Johnny's proud ""mima" Kathy; Saturday, January 30, 2010 6:02:00 AM

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

Friday, January 29, 2010

Friday Update

2 comments: