I have had a lot of trouble writing this post. I guess it's because the results were not what we anticipated. We could never have imagined things going as wrong as they have. Carter's X-ray looked awful. The left side of his pelvis is rotated out. It is rotated so badly that everyone that has read the X-Ray thinks that his leg is turned out in it. That's until they realize he is casted, and he can not turn his legs out. His pelvis is extremely damaged. It is so damaged that there is nothing that can be done right now to improve this situation. We are frustrated, hurt and absolutely exhausted! We have so many concerns for Carter's future. Without a stable pelvis, there is a risk his bladder prolapse (come back out). We are unsure how this will affect his walking, or if he will even be able to walk again. We have a lot of questions and only time will be able to answer them.
The plan for right now is to go home tomorrow. The only reason we are being allowed to be discharged is that I am a nurse. Carter will still have his external fixators, casts and a catheter. He is still on a lot of medication that we will start weaning again once we get home. We will return to Johns Hopkins in 4 weeks to have everything removed and re-evaluated. There is a chance that his bladder will prolapse and a chance we will have to have the surgery completely redone. There are still a ton of questions that have been unanswered. For right now Carter's pelvis is "as good as its going to get" according to his Orthopedic Doctor.
We are so hurt, and we have questioned every aspect of Carter's care. As a parent you want what is best for you child. Hearing that his pelvis was as good as it is going to get really hurts. Knowing that a screw moved around and damaged Carter's pelvis for 12 weeks, making it beyond repair right now, is killing us. We had so many high expectations for this surgery. We planned for this surgery to work, Carter to walk again, and for the surgery to only improve Carter's life. None of these things are certain right now, and we are heartbroken. We are happy to be traveling home tomorrow, and we know that God can perform miracles. Please continue to pray for Carter. Pray for complete healing of his pelvis. Pray the damage can and will be fixed. Pray his bladder does not prolapse. Please just pray for overall health. We miss our child so much it hurts. We are ready to see him running and playing again. Although it is harder than ever to see right now, we know God has a perfect plan. As always... To Him be the Glory!!!
Even though Carter still has his external fixators on he was able to be held. He was thrilled to get out of the bed!!! He said Yesss!!!!
We just LOVE this sweet face!
Praying for you and your sweet Carter.
ReplyDeleteWith Hope and (((hugs))))
Cheryl
Praying for strength, comfort and understanding. Carter is such a precious child....believing in HIS plan.
ReplyDeleteI am heartbroken for what you have experienced with Carter through this surgery that has seemingly gone so wrong. Without the Lord's strength, I'm sure you would have been at the end of your rope long ago. I will continue to pray for Carter's healing and for your faith to remain strong as you trust in your Heavenly Father to bring good out of this disappointment. Despite everything, it is so good to see Carter's happy little face as he is held by his daddy.
ReplyDeletePraying. Thankful that the Holy Spirit lifts us up when we don't even know how to pray. Love y'all!
ReplyDeleteAnd we all love that sweet face too. Praying, praying, PRAYING!!!! God answers prayers and he still performs miracles. Hugs and love to you all. Safe travels too.
ReplyDeleteEvery time I see that beautiful smile, knowing the pain he has gone through, I am lifted up. He makes my worries seem insignificant. Praying for Carter
ReplyDeleteI am sorry. Beyond what words can convey. My heart breaks for you. I will continue to pray...for healing. For His plan to be done. For Carter to overcome.
ReplyDeletei have never commented before but i have been reading all of your posts. there is nothing i can say that everyone else hasn't said already, but just had to let you know that you have 1 more prayer warrior on your side. it's hard to hold back the tears. you are amazing parents for being so strong. and carter is 1 amazing kid. many blessings going home <3
ReplyDeleteThere are not words. We hurt for you all. We will continue to pray!
ReplyDeleteMy heart aches for you, your husband, and Carter for such a disappointment. I will be praying for you all that God will bring His healing touch on your precious son and give you extra peace and strength right now. To God be the glory, great things He has done.
ReplyDeleteFaith, the size of a mustard seed, can move mountains! My family will continue to pray for Carter as well as for you and your husband! The poem "Footprints" just came to mind as I was typing this. You are in the Lord's arms right now, feel his comfort and love!! Hugs from TN!
ReplyDeleteMy heart goes out to you and Carter and his family, I will keep on praying that he won't have to go through that surgery again, that his bones get stronger,just for another miracle from God, and for you and your husband to stay strong.
ReplyDeleteI'm having flashbacks. Our son had his pelvis closure at Hopkins in 2006. It failed. He was in traction for three months there. When we returned to mich and they removed the plate it was discovered that the ortho surg at Hopkins had screwed into our sons bladder causing a massive infection resulting in the removal of his entire bladder. Huge mistake by ortho surgeon. We never returned to Hopkins. Never pursued anything legally. Figure if Larry wants to pursue legally he can when he is 18. Loved the nurses there. Hated the surgeon. Larry had a massive omphalocele where all organs except heart and lung were outside, no skin from sternum around rib age to rectum, no rectum, , cloacal ex trophy, spina bifida, 14 cm pelvic split, mild cp, short gut, no colon, and trached and tube fed. Was in nicu for 6 months and has had 84 surgeries. 84th today..as we speak. He is a gem. A lover. A sweetheart. Wouldn't trade him for anything. Love him dearly. Youngest of six children. He's made our life better. Hope all goes well with your son. Prayers to you all.
ReplyDeleteI also have not commented on your blog before although I've been reading it all along. I found your blog when I was researching OEIS complex and I just continued to read to see how little Carter was doing. I've been praying for you all and I'll continue to pray. I just want to mention that your post about Carter giggling made me think he's surrounded by angels and they were making him laugh.
ReplyDelete