We are making plans to be discharged from the hospital on Saturday. Lord willing, on that day, we will move to the apartment near the hospital. There is alot to do between now and then and will be busy getting ready to continue his care there. Tomorrow, we will review all the cares that he will need...TPN feedings, IV medications, daily clinic visits, and other details. Once he is discharged, I will be very busy. We will still deal with living in two seperate houses and Mark will continue to run nonstop managing the other kids at home...
Tomorrow, the 6th doctor takes over for his two week rotation at the hospital. Each time, we must get used to a new team. Hopefully, he will be on the same page as the last one regarding discharge. Sometimes, leaving the hospital can cause anxiety for families...but we are so ready to get out after 9 1/2 weeks, that we are thrilled to be able to take this next step. Just as each step has been in this process, God has graciously given us peace and sustained our every need. We rest in the confidence that He will continue to show us such love...
Elijah seems to be feeling great..he is silly, talkative and fun to be around! The nurses tell me that he is the first child with autism that they have treated on the unit. He has been an excellent teacher for them as they learn that Elijah's autism does not define who he is...they have enjoyed his sense of humor, his sweet personality, and his unique gifts and talents. Elijah has ministered to the staff at the hospital while they were caring for him. They have been blessed...and so have we.
Wednesday, September 21, 2011
Day +54 Post transplant: Teaching Hospital model
So, the nurse that stressed me out yesterday morning turned out to be one of our best nurses...It wasn't her that needed to change...it was my attitude. She even asked to be on our care team this morning because she enjoyed working with him so much. I have yet to meet a nurse in here who was out to cause us trouble, I haven't met one who didn't care about their job. Some have been able to work with Elijah better, some weren't a good fit. But overall we have had a great run here at the hospital. The room has been beautiful...We have both slept well despite nurses in the room nearly every hour. When I have had a concern, I have been listened to and changes have been attempted.
I must admit, we entered this hospital with a bit of an attitude. The University of Minnesota was not our first choice...our heart is down the block at Minneapolis Children's Hospital. Not because of the medical care...we have found the doctors to be excellent in both systems. There, we have seen an emphasis not only the medical issues that are going on, but also the whole child and their whole family. We have been spoiled with excellent care there. For us, they are "home" and the University is just a place we visited when services (like transplants) couldn't be done there..Visiting the U of M over the years always left reminding me of why I love our first home.. Children's health care.
We have had some rough times in the past with a system that needed change when our children were younger. We have dealt with doctors and staff who have not been sensitive to the unique needs of our special needs children. This is a teaching hospital and that is the emphasis above other things like family centered care. We appreciate the teaching emphasis and I welcome every intern and resident to learn about Elijah...because I know that years from now, when I child comes in with an unknown condition that includes bone marrow issue, pancreatic insufficiency and skeletal abnormalities, they will think of the little boy they met when they were in residency. I want them to remember SDS and the other unique conditions that my children have. And without teaching hospitals, we wouldn't have the excellent care we receive anywhere.
Despite our original misgivings about the hospital, we have found our experience here to be excellent. The staff have proven to be amazing. We tell our children not to judge a book by it's cover..and yet I so easily slipped into that myself. I was wrong. This staff genuinely rejoices with us when Elijah is doing well and suffers with us when he is not.
But my grumbling heart has been exposed. My quickness to judge has been revealed. My unwillingness to let go of the attitude that we deserve more... The self pity...ungratefulness has been displayed...God has so graciously displayed my sin for me to see...He didn't hit me over the head and crush me with the weight of my own sin. Instead, as I was quick to judge, he so quickly reminded me of my own heart...he has illuminated His truth...that he who is without sin should cast the first stone. The teaching hospital model is working within my heart...Jesus was not sent to heal those who were healthy..instead he came to touch the wounds of the sick...He has touched my heart..bringing me to repentance..and lifting me up out of the muck. There is no room from petty judgement towards others up here in the glow of His light. A heart filled with gratitude has not room for entitlement and pride.
I just want to be closer to my Savior. He has created a longing within me that drives me to want to cling to His Word..His truth..His character. And when he allows me to see the sin that gets in the way of a clear view of His goodness, He is teaching me..loving me in ways only He can.
Thank you Lord, for every minute of this trial you have given us. Thank you, for the forgiveness you have extended to me...for the lessons you have taught me...for the joy you have filled me with..a joy that is driven by a desire to know you more...
How can a young man keep his way pure? By guarding it according to your word. With my whole heart I seek you; let me not wander from your commandments! I have stored up your word in my heart, that I might not sin against you. Psalm 119:9
I must admit, we entered this hospital with a bit of an attitude. The University of Minnesota was not our first choice...our heart is down the block at Minneapolis Children's Hospital. Not because of the medical care...we have found the doctors to be excellent in both systems. There, we have seen an emphasis not only the medical issues that are going on, but also the whole child and their whole family. We have been spoiled with excellent care there. For us, they are "home" and the University is just a place we visited when services (like transplants) couldn't be done there..Visiting the U of M over the years always left reminding me of why I love our first home.. Children's health care.
We have had some rough times in the past with a system that needed change when our children were younger. We have dealt with doctors and staff who have not been sensitive to the unique needs of our special needs children. This is a teaching hospital and that is the emphasis above other things like family centered care. We appreciate the teaching emphasis and I welcome every intern and resident to learn about Elijah...because I know that years from now, when I child comes in with an unknown condition that includes bone marrow issue, pancreatic insufficiency and skeletal abnormalities, they will think of the little boy they met when they were in residency. I want them to remember SDS and the other unique conditions that my children have. And without teaching hospitals, we wouldn't have the excellent care we receive anywhere.
Despite our original misgivings about the hospital, we have found our experience here to be excellent. The staff have proven to be amazing. We tell our children not to judge a book by it's cover..and yet I so easily slipped into that myself. I was wrong. This staff genuinely rejoices with us when Elijah is doing well and suffers with us when he is not.
But my grumbling heart has been exposed. My quickness to judge has been revealed. My unwillingness to let go of the attitude that we deserve more... The self pity...ungratefulness has been displayed...God has so graciously displayed my sin for me to see...He didn't hit me over the head and crush me with the weight of my own sin. Instead, as I was quick to judge, he so quickly reminded me of my own heart...he has illuminated His truth...that he who is without sin should cast the first stone. The teaching hospital model is working within my heart...Jesus was not sent to heal those who were healthy..instead he came to touch the wounds of the sick...He has touched my heart..bringing me to repentance..and lifting me up out of the muck. There is no room from petty judgement towards others up here in the glow of His light. A heart filled with gratitude has not room for entitlement and pride.
I just want to be closer to my Savior. He has created a longing within me that drives me to want to cling to His Word..His truth..His character. And when he allows me to see the sin that gets in the way of a clear view of His goodness, He is teaching me..loving me in ways only He can.
Thank you Lord, for every minute of this trial you have given us. Thank you, for the forgiveness you have extended to me...for the lessons you have taught me...for the joy you have filled me with..a joy that is driven by a desire to know you more...
How can a young man keep his way pure? By guarding it according to your word. With my whole heart I seek you; let me not wander from your commandments! I have stored up your word in my heart, that I might not sin against you. Psalm 119:9
