Mila is doing worse again. She had a bad evening and night, and we just knew once again something wasn't right. We went to our down syndrome clinic appointment today and the doctor suggested having her admitted to the hospital tomorrow after her echo cardiogram if she continues to do worse and does not start eating. She is not eating more than 1 ounce every 4 hours or so. She's sleeping a lot. He was concerned she might be having cardiac issues because her liver was palpable and down. This is certainly what we were fearing but really hoping not to hear. He thought we'd wait and see through tonight and hope one more dose of antibiotics will help the UTI and then tomorrow we'd get her all checked out cardio-wise as planned.
So on the way home we came up with a plan of action for tomorrow. Then we went for a follow up with her ped about her UTI, etc. She has a multi-drug resistant ecoli urinary tract infection that is only found in hospitals. She said she has never seen it in this area before. Way to be unique Mila. The drug she is on should be working, but she continues to have a fever and seem to be in a lot of pain. They cannot give her an antibiotic injection because anything that comes as an injectible does not work on this strain. There are some IV forms that they may be able to use. The ped this afternoon was more concerned with her rapid breathing, which had started since coming home from the DS clinic just an hour before, paired with her liver not quite feeling right...she said those are not good signs in cardiac kids and we should probably just drive to Pittsburgh tonight and have her admitted :( We are hoping and praying big time her heart is okay. I just don't think we can go there again!
Please Please Please pray for us! We are frustrated for Mila and worried sick. Hoping she will find relief soon. It's just not fair for her! Trying to hold back the tears :(
We are packing to head out for our 2 hour drive and waiting on a call from the doctor to see if we need to go through the ER or if we will just be admitted.
So on the way home we came up with a plan of action for tomorrow. Then we went for a follow up with her ped about her UTI, etc. She has a multi-drug resistant ecoli urinary tract infection that is only found in hospitals. She said she has never seen it in this area before. Way to be unique Mila. The drug she is on should be working, but she continues to have a fever and seem to be in a lot of pain. They cannot give her an antibiotic injection because anything that comes as an injectible does not work on this strain. There are some IV forms that they may be able to use. The ped this afternoon was more concerned with her rapid breathing, which had started since coming home from the DS clinic just an hour before, paired with her liver not quite feeling right...she said those are not good signs in cardiac kids and we should probably just drive to Pittsburgh tonight and have her admitted :( We are hoping and praying big time her heart is okay. I just don't think we can go there again!
Please Please Please pray for us! We are frustrated for Mila and worried sick. Hoping she will find relief soon. It's just not fair for her! Trying to hold back the tears :(
We are packing to head out for our 2 hour drive and waiting on a call from the doctor to see if we need to go through the ER or if we will just be admitted.
Poor baby doll.. praying so hard for her and for all of you.
ReplyDeletePraying. Hope you get some much needed answers and that it is not heart related.
ReplyDeleteLove and prayers to your family.
ReplyDeletePraying praying praying!!!!!!!
ReplyDeletePraying praying praying!
ReplyDelete(And putting Mila on our church's prayer chain list!)
Sara the times Dom needed to be rushed back down the doctors called ahead so we just had to go to the admission office right across from the pharmacy and gift shop! Once I called the nurses on his main floor in tears and they took care of it right away as his doctor was.in.surgery...just a little trick to keep you out of the ER! Praying.
ReplyDeleteOh Sarah!!!!! Storming Heaven!! Please let me know if you need anything. We are willing and able to help you with what ever you need!!!! Love you guys so much!!!! I am so very sorry!!!!
ReplyDeletePraying for all of you!
ReplyDeletePraying for your sweet girl.
ReplyDeletePraying! Have they checked her blood to see if the bacteria has gotten in it (sepsis)? Just a thought, maybe you could ask them to test for it. The sooner she gets the right meds in the right dose, the sooner she'll get better. You're doing the right thing, advocate for your baby - don't listen and believe, trust your instincts. You are her mama and you know best! Praying, praying, praying for her total healing!!!
ReplyDeleteI will continue to pray for her and for you and your husband! My husband and children (who are only toddlers, but quite committed prayer warriors) will also pray for her. I will also try to say a rosary tonight on her behalf. May God watch over and bless her!
ReplyDeleteMy family and I will continue to pray for Mila and for you and your husband. May God watch over and protect her!
ReplyDeletePrayers and hugs....
ReplyDeleteOh poor sweet girl and poor momma and daddy. I am so sorry to hear Mila is struggling. I hope that the doctors at the hospital can get her all fixed up and back into good shape. Will pray for you all.
ReplyDeletePrayig so hard right now! That little girl has been through so much already- and you guys have too. I don't know what else to say... just know I'm praying.
ReplyDeleteOh my goodness! Praying for your sweet baby girl. Hope she gets better and her heart is okay. Poor baby!
ReplyDeleteI'm so sad you all have to go through this. Sending kisses and prayers to your sweet baby girl, and a hug to you because it sounds like you need one!
ReplyDeletePraying!!
Praying for your little sweetie Sarah!!!
ReplyDeleteHolding you all up in prayer for another miracle for this miracle baby. I know God has His hand on her.
ReplyDeleteCovering your whole family in prayers.
ReplyDeletePraying for your sweet daughter and for your family. My the Lord give you strength to make it through.
ReplyDeleteKatrina
Carlene's soon to be momma :)
www.operationorphannomore.blogspot.com
Praying!
ReplyDeleteCrying. I'm so sorry to hear this. I am praying!
ReplyDeleteLily contracted an antibiotic-resistant infection while she was recovering from her open-heart surgery. It kept us in the hospital for two weeks b/c she could only get the necessary antibiotics through an IV. However, once she was getting the right medicine it went away. I'll be praying for your sweet Mila's infection to go away as well, and also for good news with her heart.
ReplyDeletePRAYINGPRAYINGPRAYING!!!
ReplyDeleteFor Mila and all of you!!!
Poor Mila and you guys! Praying from Nebraska for your sweet little girl. She just wanted to make sure to get all the exciting things out of the way early. Keep up updated when you can, I know you are so overwhelmed and exhausted, but know God is taking care of her and has a plan of action even if we don't understand it right now. Good thing is she is going to the hospital where she can be watched every second. Why not make your entrance into the USA with a difficult UTI? Prayers
ReplyDeleteSarah, know that she'd probably not even be alive anymore if you hadn't saved her when you did. God has a reason for EVERYTHING, but no, it isn't fair. Hugs and prayers my friend...
ReplyDeleteso, so sorry to hear all this! It's terrible that you can catch things in the hospital that you probably wouldn't catch otherwise when you are there to be healed. I am hoping and praying that Mila is on better soon and that her heart is ok.
ReplyDeletePoor little jelly bean. Praying for her and you.
ReplyDeleteSue H.
Praying! So scary that after all she's been through, an infection from the hospital is what's holding back progress.
ReplyDeleteI am praying with all my heart for strength and healing for Mila. May God keep all of you close during this difficult time.
ReplyDeleteI am praying with all my heart for strength and healing for Mila. May God keep all of you close during this difficult time.
ReplyDeletePraying for Mila's health and for the doctors working with her. And praying for peace for mama and daddy too!
ReplyDeleteBrooke
www.TheAnnessaFamily.com
Prayers you need? Prayers you shall have!
ReplyDeletePraying for her and you all!
ReplyDeletePraying over here in NC! I'm so sad that your little muffin isn't feeling well. :*(
ReplyDeleteGo directly to hospital tonight and be seen right away, stop at nothing or no one. I'll be praying for Mila.
ReplyDeletePraying for healing in and through sweet Mila's body! Bless you all!
ReplyDeleteI'm praying, praying, praying!!!!
ReplyDeleteDear Lord, We know You are the only One whom can heal Mila and we are begging you to please reach down and touch her little body and relieve her from discomfort. Please cover her parents in peace as they turn their baby over to the doctors for help. Please guide the doctors, nurses, and caregivers to the correct procedures and meds that will cure Mila swiftly. I ask these things in Jesus' precious Holy name! Amen.
ReplyDeleteAngels are over you all, EVIL is not welcome! Keep speaking! We love you all and you will OVERCOME!
ReplyDeletePraying, praying, praying for Mila!!! Dear Father in Heaven, please be with precious Mila and her family as they face this illness. God, please be with the doctors as they make decisions regarding her care. Please give Mommy and Daddy comfort and peace in their heart knowing that you are watching over their little jelly bean. Please grant total and complete healing of little Mila quickly. In Jesus name, Amen.
ReplyDeleteDear Lord, we trust in your love for Mila and we trust in your plan for her with her faithful mommy and daddy. Give them rest tonight, loving God. Fill them with peace as the doctors treat this precious daughter we have all come to love. Grant complete wisdom for the hospital staff so that Mila can be healed and return home quickly. You alone, God, know how much longer this painful road will spread out before this family. We don't understand your ways or your perfect timing but we know you are love and that you always show up when we need you. Hear our prayers Lord. We claim healing for little Mila in the name of your son, Jesus! Amen!
ReplyDeletePraying for Sweet little Mila
ReplyDeleteHi! We brought Charlie home from U last April. One week after coming home he also had the multi-drug resistant e. coli bladder/kidney infection! I know of at least 1 other kid who came home from U with the same thing. It's nasty. Charlie was in the hospital for 8 days. There are few drugs that really kick this thing. The one Mila is one now is NOT working. They *should* be running cultures to see which drugs the bacteria react to - ask about this to make sure they are doing it! We found, in our 487 hospital stays/dr. visits, you need to keep asking questions to keep the ball rolling! Since your pediatrician may have never seen this before, you could ask her to consult with the local pediatric infectious disease doctors. This type of e. coli makes them all giddy and they'll know just what to do!
ReplyDeleteI'm not saying this to scare you, but this particular infection can be hard to get rid of. Especially since the poor punkin is recovering from heart surgery! We fought this thing all summer, off and on, and it delayed Charlie's heart surgery. Charlie had a huge VSD and high pulmonary hypertension. He's doing totally awesome now! In a few weeks Mila will be unrecognizable because she'll be doing so well! In no time you'll have a hard time believing she was ever that sick at all! We'll be sending prayers your way.
Rachel
Praying for your sweet girl.
ReplyDeleteCindy
Sending prayers of strength and health for your little sweetie. I am so sorry Mila is going through this, it must be very hard to watch. She is such a little miracle, remember she is in good hands...His hands! God bless and safe travels.
ReplyDeletePraying for healing for Mila. Praying for you to have the strength you need to get through this.
ReplyDeletePraying for Mila. And for you.
ReplyDeleteOh my goodness!!! Prayers are coming.
ReplyDeleteOh Sarah, it all sounds so scary. Our prayers are with you all and with the doctors in Pittsburgh. You are such good parents. Much love to you.
ReplyDeleteJane
Oh my goodness, how I hate to hear this, I cannot imagine how scared you must be prayers for Mila, right now!
ReplyDeletePraying for you and your sweet baby right now.
ReplyDeleteJoy
Praying for your sweet Mila. Rest in knowing you are ALL in His hands and His plan is perfect. HE IS FAITHFULL!!!
ReplyDeletePrayers for precious little Mila, you and the rest of your family, and for all who are involved in her care...
ReplyDeleteThinking of you and praying for the very best outcome this afternoon..
Susan in Ky
Cousin to 2 from EE