Just 1/4 of the way through the first dose of chemo, Elijah developed a cough, became agitated, sweaty, and his oxygen sats dropped. They gave him more meds to alleviate some of the symptoms. His lungs sound clear and but he is still having issues keeping his sats over 90.
He is sleeping well now and they are watching him closely. If you are a night owl, then please pray along with me that Elijah would respond well to the meds and get a restful nights sleep.
Mark is training an overnight nurse at home tonight. We are hoping to have some more staff working overnight shifts with Isaac so that Mark can get some sleep at home during these next few months.
Elijah is getting wretchy as I type. I will keep you updated.
Tuesday, July 19, 2011
BMT Day -10
The 1st day at the hospital is winding down. It is day -10 The day of transplant is considered day 0. Chemo is the next step...to wipe out Elijah's marrow so that his body can accept the donors healthy marrow. It has been a long one...the world of Pediatric Bone Marrow Transplantation and autism are colliding like two freight trains. Today it has been difficult to try and help Elijah understand that he can not leave his room (let alone for the next 30 days at least.) The elevators are just outside of his room and he knows it. The staff has been sensitive to the issues we are facing but they have little answers to fix things...there just are no easy answers. Elijah's tolerance for the procedures he must endure has deteriorated over the day. He just screamed through a dressing change and blood pressure reading but I think he may have used up all his remaining energy for the day.
I am fighting the thoughts that threaten to steal my focus...like "How possibly am I going to be able to stay in a room with this beautiful, precious, obsessive, difficult child for 24 hours a day for months? And then I look at him as he faces all that he has in just one day...his deepest fears regarding medical procedures are coming at him from all directions...then I quickly remind myself that it is an honor to walk him through this journey..and I will do it without grumbling or complaining. I will hold his kicking body, kiss his owies, hugs his fears away...
For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord. Romans 8:38-39
He love us and he will never, ever stop pouring his faithfulness and mercy upon us. He is here..in isolation with us. And he knows our struggles and weaps with us over our pain. His faithfulness will see us through...at that is where our confidence is.
The nurses are going to hook up his first dose of chemo now at 8:30 pm. Please pray for our sweet little one.
I am fighting the thoughts that threaten to steal my focus...like "How possibly am I going to be able to stay in a room with this beautiful, precious, obsessive, difficult child for 24 hours a day for months? And then I look at him as he faces all that he has in just one day...his deepest fears regarding medical procedures are coming at him from all directions...then I quickly remind myself that it is an honor to walk him through this journey..and I will do it without grumbling or complaining. I will hold his kicking body, kiss his owies, hugs his fears away...
For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord. Romans 8:38-39
He love us and he will never, ever stop pouring his faithfulness and mercy upon us. He is here..in isolation with us. And he knows our struggles and weaps with us over our pain. His faithfulness will see us through...at that is where our confidence is.
The nurses are going to hook up his first dose of chemo now at 8:30 pm. Please pray for our sweet little one.
