Welp, we are back in the old PICU. Feels way too much like home. We know most of the staff by name and are strangely acquainted with the layout of the place. After a couple days of headaches, we decided that maybe we should just check and see if Ava's shunt was functioning properly...well, it wasn't. That meant surgery #3.
The surgery was to reposition the shunt installed in surgery #2 so that the fluid in her brain would flow better. It was an hour long procedure and she did well through it. We are in recovery now and are expecting to go home again tomorrow.
Please pray for wisdom in the days ahead. How we get her to New Jersey is the newest challenge. We have options, we just want to choose what is best for her. We don't know much about the days ahead, but we know God owns them. Pray that we will just stay in the moment and do what is best for Ava.
Another crazy day. I am hoping for some boring ones soon.
I am so sorry to hear that another surgery was needed but praise God for the surgeons who He has gifted to be able to perform such procedures!
ReplyDeleteI pray that the answer to the "how" to get Ava to NJ becomes clear to you and that she's able to travel soon. I'm confident that you'll do what's best for Ava!
Always praying...always believing...
Josh, Thinking of you all and praying for God to guide you and hold you in His hands. I was reading this and was reminded of a song we sang in chapel at school when I was younger. "And He will raise you up on eagle's wings, bear you on the breath of dawn, make you to shine like the sun, and hold you in the palm of His hand." May the comfort of His guiding hand give you comfort and peace in the days ahead. And may His hands heal Ava completely. Miracles happen all around us everyday, and I pray fervently and faithfully that you get yours. Faithfully, Jenny Neveras
ReplyDeleteAs I read your entry I was listening to Mercy Me"s Word of God Speak. The lyrics are calming and filling. I was so sorry to hear little Ava needed another surgery. We think of your family often and you are all in our prayers. I pray this is a good week for healing and traveling.
ReplyDeleteI heard that Ava was returning to surgery just before boarding a plane flight. I was able to spend almost the entire 2 and 1/2 hour flight praying for her. What a privlege!
ReplyDeleteYou all are the first thing that comes to my thoughts as I wake at 3am. Thank you for blogging and allowing us to be specific in our prayers. I am praying for boring days of healing and preparation for New Jersey along with a few songs about hineys mixed in with the sweet sound of Ava's laughter. You are amazingly strong which is purely reflecting Him. Even what you call bad days are stronger than what most of us think we can do. Continued prayers shower over your family!
ReplyDeleteMy husband and I spent time in prayer for you all tonight as we heard the news Ava was in surgery again. The good Lord has me up early praying that your family gains clarity on the answers you seek in the hours and days ahead. Praising Him for bringing her through the 3rd surgery without incident. Continuing to pray you, Lisa and Noah have the strength and wisdom you need in the days ahead. Also, Praising God for putting you in a family that has given you the spiritual foundations you need to cling to Jesus during this time. A blessing beyond measure.
ReplyDeletePraying daily. Whenever you come to mind which is several times a day. Jesus please heal Ava!
ReplyDeleteWeepy over little Ava but SO grateful you both had the wisdom to go back to the hospital. Pleading with the Lord on your behalf for answers to all of your prayer needs. Keep hoping and believing.
ReplyDeleteSue Schutz
I read your blog everyday and am praying several times a day for Ava and for all of you.
ReplyDeleteI woke up early and your blog was the first thing I read. So sorry that Ava needed another surgery, but joyful that she came through just fine. Each night, my daughter and I pray for you and your family. I pray this week brings enough healing for her to travel and that you and your famiy are able to make the arrangements that make this easier on her. Always keeping all of your family in or prayers!
ReplyDeleteDear Josh,
ReplyDeleteMay I ask questions?
What else have you told Ava about the changes in her condition?
What anesthesia are they using for the shunt procedure?
Praying for Ava--and you and Lisa and Noah. God will show the way and I'm believing He will heal your sweet precious little girl.
ReplyDeleteJosh,
ReplyDeleteOnce again thank you for posting in the midst of very trying circumstances. Praising God in that the shunt could be repostioned and that this will help her. Praying that the arrangements that you need to make for taking Ava to NJ will all come together and that the Doctor will be able with God's help to give her complete healing.
We love you all ans are praying that the days ahead will become boring and once again routine for you all.
Still praying for Ava and you all. Praying for boring days ahead and a sucessful New Jersey trip. Thank you for your faithful updates. Your family is such an encouragement and example to me!
ReplyDeleteprayed like crazy last night when we heard you were back in surgery. Our hearts are breaking for your family.
ReplyDeleteJosh, I am friends with Grandma Patty on fb and she put a post up for a prayer request. I began to pray right then and there. I went to bed with the Hunter's on my mind and prayed somemore. Then this morning as soon as I awoke here I am reading you blogg. As I read the first paragraph of your blogg the memories came flooding back of almost 18 years ago of the exact same experience with my son. In a stange way it is a comfort to feel the way you discribed,atleast it was for us. Not knowing the outcome but knowing that God and his insturments were working together. I pray for yours and Lisa's strength and for this procedure to stablize Ava so you can get her to NJ., and as always Praying for you All especially for Noah that he can take this all in and be at peace knowing that God has his sweet sister and everything in control. Thank you once agian with sharing you most private family moments with us.....
ReplyDeletePraying that God will provide you the wisdom to do what is best for Ava. Praying fervently for your family!
ReplyDeleteA prayer warrior
I was up some last night taking care of my 2 yr old with a cold. Was reminded of how exhausted you and Lisa must be. Prayed for supernatural strength, peace and rest for you as you face the days ahead. You and your family bear witness to the amazing power of Christ in someone's life. Your faith is real even when tested. When I read your blog I see a man who, despite his circumstances, has an unwavering foundation in Jesus Christ. Thank you for allowing us a glimpse into your world. And for showing us what walking by faith really looks like. Love you all! Always praying ... always believing.
ReplyDeletePraying through my tears this morning. I was reading the chapters of exit 5 in "innerstate 80" last evening and kept thinking of your family. I had an overwhelming feeling to get my Bible and read some encouraging passages, one of which was Philippians 4:7....And the peace of God which transcends all understanding, will guard your hearts and minds in Jesus Christ. My love and prayers to you, Lisa, Noah, Ava and entire extended families. Love in Christ.
ReplyDeletePraying Jesus will breathe healing and life into precious Ava, and for a speedy recovery. Praying strength and wisdom for you and Lisa in the days ahead. Even though you are weary, He is not.....thank heavens!
ReplyDeleteWe traveled a journey with very dear friends, whose daughter had many issues with a shunt after a traumatic brain injury. While not ideal in the eyes of her marvelous medical team, they opted for an external shunt - as it is easier to monitor. . . it gives them much needed relief to know whether the shunt is causing symptoms. The symptoms are so hard for a parent to watch their child endure (headache, nausea, vomiting, sleepiness, non-responsive, etc) - especially when it is not clear the cause. It might not be a solution for Ava, but I encourage you to consider it in prayer. The doctors were reluctant - but what a difference it has made for them. Hugs, and constant prayers!!
ReplyDeleteThe Kaufholz and Summit families are praying diligently. We are all here and able to help, no request is too large or small.
ReplyDeleteI love you guys very much.
Wiping my eyes, blowing my nose and praying for Ava and all of you. so sorry for this set-back, but it didn't surprise God! He is caring for precious Ava just as you are and He has a plan. Praying for healing, strength and patience. I know you may be weary, but hang in there! Praying for the whole family!!
ReplyDeleteJosh and Lisa:
ReplyDeleteI know it may be difficult to look at this from our prospective - "outside looking in" - but this journey has been a miraculous ministry - all by way of unthinkable challenges of a 5 year old angel named Ava. Lives are being touched and changed. Pray for you guys day, night; each time you cross my mind (even wake up in the middle of the night -several times already in prayer for your family and Ava). Satan is still a thief and a liar, and Jesus is still King, Lord of Lords, Savior, Comforter, Healer, Friend, Father, Counselor, Alpha and Omega, the Great I AM. Pray and praise, pray and praise. Lots of love being sent your way - Debbie Hanley
While sitting it the NS office this morning, listening the the shunt procedure, the risk, the recovery time, the complications, all of it. While listening to them tell me my whole life was changing, yet again, all I could think of was your little girl, how much strength she has given me. My condition isn't any different from the one that has caused her to get the shunt, Intracranial pressure, and the procedure is the same. Your family, your story, and your struggle has given hope for others out their struggling for a medical answer. While I haven't found my medical answer. I did find my way back to God. I did find that being angry with the Lord wasn't my answer,and leaning on him for support and strength and healing is much more positive and healing in itself then allowing this hatred and anger that was building up inside of me. I am so sorry for everything that you are going through, and I wish you the best of luck. But please in all your time of pain, I also wanted you to see the good your story is doing in bringing people back to God, those of us who were lost, are finding our way back, however slow it might be.
ReplyDeleteMy Prayers tonight go to Ava, that Ava find her way in this world, or the next, as painless as possible and that her parents can see that in everything there are great things that come from the darkness.
Josh-
ReplyDeleteDarn it! I am soo sorry to hear the news.
Know this, God IS with you all. He is holding Ava.
Faith was never meant to avoid life. It was meant to sustain us in the midst of life. Our faith is that the unseen, often unfelt presence of God empowers us to proceed through adversity & transform the test before us into the testimony behind us.
I'm praying-
Jody
I feel so sad. Im so sorry that your family has to go through this. Please keep your chin up. Praying! God is in control! Much love and prayers!
ReplyDeleteGod,
ReplyDeletethank you for this day and for your love. Lord I pray for this family... That you fill them with strength and courage. That you give them wisdom and comfort. Lord that you allow them to get to NJ. Lord please wrap Ava in your healing arms Father. Give the Doctors here the wisdom of your love, so that this time there is no questions wether she can make her trip. Father Only you can make all this happen. For Lord you are our Alpha and are Omega. The one and only.
Give this family your love and grace. Be with them when they cry and when they are angry. Be with all of us who are praying not to question or give up. For you are our Lord and we will forever love and trust you. All this I pray to you. Amen
Ann, do you know if the family has seen Dr. Nicholas G. Avgeropoulos,
ReplyDelete1400 South Orange Avenue
Orlando, FL 32806-2134
(407) 648-3800
...Dr. Nick is a nationally known neuro oncologist that specializes in GBMs. He does gamma knife procedures and has even done some amazing trials with things like scorpion venom...and the results are astounding. He has privileges at FL Hospital. If anyone could make a difference it would be him. He's one of those that isn't afraid to try a Hail Mary option when nothing else is working or available.
Dear Josh, Lisa and Noah,
ReplyDeleteYour little Ava has touched my life in a special way. Reading your blog everyday I feel Ava became a member of my family to. I prayed for her everyday, I found myself reading articles on Glioblastma looking for a miracle treatment for her.. Seeing the amazing faith you and your family have has brought me closer to God. I find myself praying more and wanting to do more for others. It has also brought me closer to my family. I have two sons, Josh and Mitch, Josh also has a little five year old Ava, I find myself spending more time with them and I make sure I tell them every day how much I love them. I will continue to pray for you and your family and I am praying for a cure to be found for Glioblastma, no little child should have to go through what Ava did. I would love to see a research foundation for brain tumors set up in her name so she can continue to touch the lives of so many.
Thank you for touching my life and sharing your beautiful little girl with all of us. May God continue to bless you and comfort you during this most difficult time.
Love and blessings,
Yvonne Smith