The severity of Grace's storming caused a Care Meeting to be called today. The doctors were very honest with Dad and Mom and "admitted" that they had never seen a case of storming this severe or last this long. The doctors are confused why she seemed to be getting better and now seems to be going back to severe storming. The doctors do not know what to do. Mom was relieved in some ways to hear this because she has suspected this for quite sometime, but it had not been verbalized.
The doctors want to do a spinal tap to check for possible infection, but Mom is very uncomfortable with this being done. She does not want risk of further infection and it seems whenever they do a procedure with Grace that an infection follows in the area of the procedure that was done. The doctors are going to wipe the slate clean as far as medications and try one at a time to see which are having a positive effect and which are not. The doctors suggested this much to Mom's excitement because Mom was actually going to ask the doctors to do this very same thing!
They are beginning to use the G-tube again and starting off slowly to make sure there will be no problems with leaking like there was in the past.
The doctors seem to think that the bouncing back between ICU and Rehab may persist. Their desire is to have her in Rehab at any point where she is stable. The date for Grace to return home has been pushed back and there is no definite date at this point. According to the doctors, Grace would need to be stable, not storming and with no need for changes of dosages of medication for a week and half in order to be sent home. We are standing in faith that Grace will blow all the doctors out of the water by walking out of the hospital while singing her praises to God!
The family's insurance policy has no life time max cap on it which is pretty much unheard of in this day and age. Well, Mom got a not so friendly call from the insurance company asking a whole bunch of uncomfortable questions and basically trying to figure a way out insurance company to get out of paying for all the medical bills that are pouring in for Grace's care. Mom is frustrated to say the least, but is not concerned or worried about it. God has provided and will continue to provide!
One of you posted a comment praying for "giggles" and "joyful times" for the family and I am happy to report that prayer was answered at bath time with the boys! The oldest son has finally mastered the art of REALLY jumping! He actually gets some air now rather than just squatting and pushing up! He is also quite fascinated with the location of his belly button and tends to get it confused with other body parts that we won't mention here in case he reads this some day when he is older :) He loves his little brother and loves to give him raspberries in all sorts of interesting locations and Mom is now in the process of teaching him boundaries :) Hearing Mom talk about the boy's interactions put a smile on my face and I could tell she was smiling while sharing with me.
Mom's prayer time was extremely encouraging today. God gave her a picture of Grace's brain in Jesus' hands. Wow - what a picture! Mom continues to stand in faith and not waver in the promise that God has given her that Grace will return to her sweet and rambunctious self. The difficult part is that this will occur in God's timing and often we want it to happen in our timing.
Mom was called by a friend today who has many children including some with special needs. This friend got her highly reccommended pediatrician to take on Grace once she returns home. The amazing part is that this pediatrician is not accepting new patients. The more amazing part is that he works out of Children's and is willing to follow Grace on a daily basis until she comes home. Wow - what an answer to prayer that we did not even know we needed to pray for!
Please pray for:
- Storming to END permanently
- Wisdom for parents/doctors regarding spinal tap
- Medical Insurance to cover all expenses at 100% after deductible which is what their policy states
- Praise for the laughter the family had with the boys during bath time
- Praise for a pediatrician for Grace
- Complete healing and restoration of Grace's body from head to toe
- Financial Provision (If you are interested in this area please contact info@gracegoodday.com for more information).
Thank you to all of you who read the blog! The family appreciates your support and all your comments.
5 comments:
I cover Grace with the blood of Jesus. I bind storming and every symptom and cast them out in Jesus' Name and I loose God's rest and peace to her body. I bind every side-effect from all medications and cast them out in Jesus' Name. No weapon formed against Grace shall prosper and every tongue that rises in judgment shell be proven wrong.
I speak the Name of Jesus to everything that is happening that is not according to God's plan for Grace. At the Name of Jesus, every knee shall bow and every tongue confess that Jesus Christ is Lord to the glory of God the Father.
I bind infection and command it to leave Grace's body in Jesus' Name. Her body is the temple of the Holy Spirit who dwells in Grace. Greater is He that is in Grace than he that is in the world.
I bind fear and trauma from Grace and her family in Jesus' Name. God is holding each person up and giving them his peace and comfort.
Grace is redeemed by the blood of Jesus!!!
It is so difficult to understand and 'be on the same page' with medical doctors sometimes. I used to defend docs at a children's hospital and as much as frustration is a factor for the family, I will continue to pray for the docs because as human beings, they are frustrated too but the docs who specialize in the needs of children are about as hope filled and human as they come in addition to being on the cutting edge of new medicine, etc. God in Heaven, helping healing hands for Grace's caretakers; continued rasberries and giggles for her brothers and thank you Father for the affirmation for mom in dealing with the care providers. We honor and love you God and know that you are the One who fills the gap that we stand in next to you to fight the battle of the one Your Son was tribulated with. But we also know God that as soon as you blessed Your Son at his baptism he was 'spirited' out into the wilderness, tested for 40 days - let us allow the yoke of being tested to rest on Jesus again, in His precious name, Amen.
Father God, we come to you to stand in the gap with our dear friends and their family. We ask for all who have anything to do, any task to accomplish for Grace's care to be moved by your Holy presence. We praise you for the understanding needed to bring Grace to her best health...understanding in YOU! Thank you Jesus for this day and all you will bring to each us, each opportunity to sing your praise and speak your name. In the name of Jesus, the Christ, we pray. Amen.
This morning I woke with Grace on my mind and this Ray Boltz' song in my heart entitled, "The Anchor Holds," and the chorus goes like this:
The anchor holds
Though the ships been battered
The anchor holds
Though the sails are torn
I have fallen on my knees
As I face life's raging seas
The anchor holds
In spite of the storm
He still reigns and He holds the future for each of us despite the trials life brings...on day 40...the days of testing come and HE STILL REIGNS SUPREME!!!
May the peace and calm assurance given only by our Lord be with you all this day.
We love you!
L & T
I am so inspired by the vision of Grace's brain in Jesus' hands. That is so comforting. May our Lord Jesus stop the storming. May He lead the medical caregivers to the right medication to rid Grace's small body of the posturing.
Psalm 34:19
A righteous man may have many troubles, but the Lord delivers him from them all.
Heavenly Father we seek your help for this family and Thank You for being by their side. Love, Pam
Lord, I pray that You would give the doctors insight into what is going on with Grace. I thank You that they are striving to give Grace as much therapy as she is able. I pray that we would continue to put our faith not into the medications alone but into Your hands. Grant her body the ability to fight off infection. Stop the storming.
I pray for continued grace and mercy at Dad's workplace. Give the family wisdom on how to balance their time wisely.
Thank you so much for allowing the boys, as well as their parents, moments of play and fun in the midst of the struggles. There is indeed a time for every purpose under heaven.
Continue to direct their times and dates. Direct them to the home You would have them to live in.
I pray that You would fight this battle with the insurance company for them. Thank You that they have nothing to worry about. Continue to meet their every need.
Strengthen their relationships with each other and with You. I ask these things in Your name and for Your glory's sake. Amen.
Elisabeth
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