I am sorry for the late update. I have lost my Internet here on my floor of the hospital, and had a terrible time trying to get the IT dept up here...at any rate, I apologize for the delay.
Yesterday was a tough day. Ajay had trouble with his jugular line, and they had to take him to the cath lab to inject dye to insure that it was placed again properly. When they injected the dye, they found the Subclavian artery
occluded on the right side of his heart. When the blood flow was lessened, it reverted back to the path of least resistance and flowed the other direction. That being said, he was taken immediately to the operating room to have a stint placed to open up that artery.
Our little boy has had 3 surgeries in 2 weeks time. He is not yet responded any further in his lung capacity, or has shown any signs of it being inflated. All of the doctors and surgeon have tried all kinds of therapy, meds, respiratory meds and treatment,etc without any improvements. He is a very sick boy who needs continued prayers to continue to fight.
The plan for today is to meet with the pediatric physical therapy team to prevent further atrophy of his muscles, to meet with a pulmonary expert who specializes in pediatric lung diseases, and to keep him comfortable. The meds are tough on his body, keeping vital organs asleep too long is also a hardship. If we don't keep him sedated, he can be very fidgety and becomes angry. He was so angry yesterday, he pulled on his wrist restraints so hard, that the had to replace the IV and give him 2 stitches to keep it in place. Sedation is a must, but at the same time, it prevents his bowels to work, his stomach and intestines are asleep, and his breathing is shallow and slowed. Respiratory is "venting and conditioning him" with higher breathes to increase his volume 4 x a day. This is kind of like exercising his lungs to expand to help open the lungs and enable him to increase breath sounds.
It has been since his clot was removed on Friday that he has not made any progress on this lung. The doctor said that in his 17 years experience that he has NEVER had a child that didn't eventually open his/her lung...with time.
Oh Carrie ~ My oldest daughter and I took some time to sit and pray over Ajay and your family and the doctors/caregivers today. My heart is beyond heavy for you, just knowing the weight of what you bear. We know that God is with you though, and just truly feel peace about that. Praying and believing that is miracle is in the making, and that your precious little boy will pull through this with flying colors. We have loved and prayed over him since he arrived at NDFH as little Judah, and we just fully believe that God has BIG plans for his precious life! Hang in there and know SO many are holding you all up in prayer.
ReplyDeleteSending big hugs your way!
OXO,
Tanya Thom
Praying that this little guy rebounds in a way that astonishes and astounds everyone! A miracle, just waiting to happen. Praising God for His goodness and faithfulness in choosing parents for Ajay who would go to the ends of the earth for their child, and did! If you need company or childcare, you have my number and I am available. Love from here. Jane
ReplyDeleteYou don't know me, but I feel like I know Ajay after watching him grow during his time at New Day. I just adore this little boy and wanted to say that (like many) I am praying for you! Melissa
ReplyDeleteYou are still in the prayers of myself and many others connected by Newday. Even if we don't always say it. And I am SURE that you are prayed for EVERY morning during the morning prayer time at New Day. He is a Very Amazing Boy! And I am Sure that he has been in Gods Hands all his life. He has a strong spirit and Desire to live. I feel that God is not done with him yet. I pray for HIS Grace,Love and Healing Power for y'all. AND I Send My Love for Judah PaPaG
ReplyDeletePlease forgive. I did not use his name "Ajay". I beg forgiveness. He was not Ajay when I played with him. And walked him around holding my fingers. Then got yelled at for overexerting him. I watched him and listened for his breathing. As long as his breathing was still good and strong and we walked slow (me on my knees) I felt he was ok and He Loved It. Then we quit before he stressed or got tired or anything. He Longed to walk and play and do things like a strong healthy child should. I Love This Little Wonder Of God's Work.
ReplyDeletePraying continually for sweet Ajay...and for all of you...our family is lifting you up multiple times during the day!
ReplyDelete