Everybody always wants updates on Kreed. I've avoided it for days. We have been in the hospital for 19 days, 40 days overall since February. Kreed is a medical mystery. They don't know why systems are failing on him. He now has decreased urine output and wicked different colors of pee but his kidneys are normal. He still has periods of low oxygen. When he stands or walks he's still in extreme pain. Nothing has changed. Tests have been done. Nothing is found. There is no treatment.
We have a care conference on Thursday to try and figure all this out.
Meanwhile our hearts break. Our sweet boy who loved to hike is replaced with a boy in pain who doesn't want to get out of bed. He has deteriorated so much. I cry at night when no one is around because I can't even believe this is our life. Every day I sit and wait and help hold him during rages or advocate for his care. At night I research everything I can possibly think of and more.
I'm exhausted. My muscles ache. I'm sad. I'm angry. I'm everything. Kreed is in pain. He's sad. He cries. He rages. It's never ending for him.
I miss the sunshine. I miss him playing sports, coloring, swinging, hiking and loving his life. I never wanted this life for him. I wanted a life full of love and light and happiness and joy. Not pain and suffering. We have worked so hard on so many things to make sure he will have a good life. But now this year I have only been able to watch him be in pain and suffer.
Idon't know how a normal life will ever come. I don't know what will make him better. I don't know what will come of our life.
I am so broken for him. I am so sad for him. I am so angry for him. But I will never stop fighting for him. One day he will feel the sunshine again. One day he will want to hike for hours again. One day he will not be in pain. One day he will smile and have fun all day. One day
im so sorry your going through this I hope they find something soon
ReplyDeleteNo words. Sweet Kreed. 💔 Love, hugs, and hopes for healing to you all.
ReplyDeleteI hear you and can relate 100%. My son is very similar medically to Kreed along with Autism Related Catatonia (another version of hell for him). Watching the same regression has been gut wrenching as a parent.
ReplyDeleteDid you get any answers to the metabolic issue? Please let us know if they give you any insight as we get no answers to that either.
I think of you all everyday and have been looking for updates. My heart breaks for kreed as it does for my daughter who is struggling with no answers similar to Kreed's. Each day is unknown and painful. I will pray Thursday brings you some options if not answers. 🙏🏻💙😢
ReplyDeletei am so sorry
ReplyDeleteI am going to keep praying for all of you,
ReplyDeleteI'm so sorry. Have you considered taking him to the Mayo Clinic? There doctors are supposedly the best. I'm praying for all of you everyday.
ReplyDeleteMayo clinic is not so good with autism...but if you decide to come to the Mayo CLinic in Rochester...let me know. That is where I live and I would love to help out any way I can. My 16 year old is a lot like Kreed I think, but without the metabolic and other health issues you are having now. Who knows what is in our future? Hang in there and just love him every day just the way he is. Do all you can with what you have and that is all you can do.
DeleteThis is so heartbreaking to read! I am so sorry kreed is having such a hard time..I pray for an answer and help for kreed to get better and for your family for comfort and guidence! Thinking of you all!!
ReplyDeleteI remember you writing that you feel prayers do it help your son, please know that it is the one thing we can do from far away. Do not shut down grace. I am sending so much to Kreed and to you. You are not as alone as you feel at times. I am grateful that you can reach out and touch so many hearts, I am grateful that you are in a place that is doing everything they can to help your son. I am grateful for you, and for all you do for Kreed.
ReplyDeleteIm very truly sorry. You're such a great mom and Kreed is an awesome son. My heart goes out to you. Praying for comfort, strength, and healing for you and your family.
ReplyDeleteMy Heart breaks with yours... Never Stop, Never Give Up...
ReplyDeleteI will keep praying for you.. xoxo
Our Prayers are with you. I know they don't help you but it's all I have to give you. God bless you all.
ReplyDeleteMy heart breaks for you and Kreed. Please know that I pray for all of you to continue to be strong, for his pain to end, and for an answer from above.
ReplyDeleteWhen you are there, alone, in the dark and crying at night, know that I am there with you, crying, and holding your hand tightly. I send you love and light to you, your darling boy, Kreed, and to your entire family, too, during this very difficult time.
ReplyDeleteHe is so lucky he has you, I know you will keep fighting for him I just hope you don't have to do it much longer.
ReplyDeleteBrought tears to my eyes
ReplyDeleteThis is so fking unfair. I know how much sadness and anger I feel for you all, I can't even imagine it in your level. I'm not the most religious person, but I pray to whatever might be out there to help Kreed. To help you all. ♡
ReplyDeleteErin, I am heartbroken reading this 😟 Hope for a brighter tomorrow for Kreed is all we can do right now. We are all puking for you, for Kreed.... 😚❤🕊
ReplyDeleteErin my hearts hurts for you all, I pray there is answer soon. I love seeing the pictures of Kreed and you smiling together enjoying everyday life.
ReplyDeleteMy heart breaks for you Erin, I pray you'll have answers soon. I have always enjoyed pictures of you and Kreed smiling together enjoying everyday life and one day you will have that again. Much love to you all.
ReplyDeleteHope Kreed gets better soon.
ReplyDeleteYou all are constantly in my thoughts. I can't even begin to imagine what you are all going through -but I do know how hard it is to feel helpless while watching your child in pain. Hang in there, you are doing an excellent job with Kreed...regardless of what life has thrown at you.
ReplyDeleteHope he gets better.
ReplyDeleteNo words will make you feel better as a mother this is the worst pain but we are all thinking of you even though you don't know us we think of Kreed daily and think of the amazing strength you show as a mother big hugs and I hope and pray your sweet boy will be outside enjoying the sunshine again xox
ReplyDeleteAlthough we've never met, I feel like I've known you forever. Love you guys. I promise you and Kreed are in my daily prayers. I believe God will do something huge in his life. Right now prayer is for the doctors to have wisdom to find out the causes of those symptoms. Then for Kreed not to feel pain and get some rest. Same for you, love. You're not alone in this trial. Sending all my positive energy and love.
ReplyDeleteMy mother heart breaks for you.
ReplyDeleteI hope they figure out what's going on soon. Hugs to Kreed, you and your family.
ReplyDeleteI have been wanting an update but I was hoping it would be with better news. Im praying for Kreed, your family and all the doctors involved with this care. I also am praying really hard that you get some answers soon so that this sweet boy can b rid of all this pain and discomfort.
ReplyDeleteI continue to pray for all of y'all to receive peace and answers to all that is going on in Kreed's body, God to guide the physicians to the right care for him and for Kreed's body to accept the treatment. I pray for total healing of Kreed's body, so he may again; run, jump, hike and enjoy all that is around him.
ReplyDeleteMy son is not as medically fragile as Kreed, right now. He has been in the past and the Dr's reassure us, he will be again. One of his Dr's did a cheek swab test, to find out the medications that would be compatible with his DNA and which ones will cause him issue. It helped immensely and we were able to switch or stop the meds that were negatively effecting his body and mind.
Without that test, my son would not be here anymore as two of the meds were destroying his system...it was devistating to learn the cause of his latest downhill spiral was the medications we thought were keeping him alive.
Thinking and praying for all of you. Is there any chance that you could get Kreed to tolerate a wheelchair ride outside of the hospital? Maybe some fresh air would give him some relief, even for just a little while. Please rely on the people in your "village" to help carry you through this. You need care, too, Mama. (((hugs)))
ReplyDeleteMy heart aches as I read your update. I could feel the hurt, brokenness and despair in your words, as I'm sure everyone else did too. From one parent to another, I pray for strength, guidance and answers to calm you and give you hope. I pray sweet Kreed's pain & discomforts stop and his body heals and gets stronger everyday. I pray the doctors have new information revealed to them to answer all questions and find out exactly what's going on in Kreed's body. Hugs to you and your family.
ReplyDeletePraying
ReplyDeleteI am so sorry to read this update. I have been following your story on Facebook,YouTube and here on Blogspot. I am also praying for all of you. You may wish to look at a Hypobarric Chamber and try Fish Oil Pills(Omega 3 and 6) plus Cranberry Juice and other fluids if Kreed can tolerate it.
ReplyDeleteWhat I have found is that when you have a lot of people praying it helps one to heal. I firmly believe in prayer and perhaps you can get your local Church to hold a Vigil for Kreed if that is what you believe.
Just reading your Update brought me to tears. I just don't have the words as you are in this medical puzzle and you long for days of hiking, sunshine and happiness which I pray will come. I just know a miracle will happen soon. I am optimistic that your medical conference on Thursday will bring you that much closer to a treatment plan. All we want is for Kreed to be out of pain and able to have better O2 levels etc.
Wishing you all the best,
My heart breaks for you and Kreed. Wish I could just give you a hug. I am praying and thinking of you often.
ReplyDeleteRIP my dear friend I hope you have fun in heaven. I will miss you. Why did kreed die please comment me back
ReplyDelete