Friday, July 1, 2011
Welcome to Elijah's world. Often he thinks in numbers...these are the numbers he encountered on the way to visit the hospital yesterday. The BMT clinic is on the 9th fllor of the hospital and we parked on level p3...we stopped on several floors along the way. He orders his world as he repeats these numbers to us over and over. And he doesn't forget a single number..therein lies the problem..
We met with the child life specialist yesterday. Elijah chose "lamby, zebra, and meow" to undergo the procedures that Elijah will undergo next week when he begins work up week. The child life specialist gave Elijah a check list of all the procedures and we went from room to room, getting stickers after a task was completed. Elijah did very well as long as he made sure he was nowhere near the equipment, the staff or any thing that scared him. We took pictures of every step of the day so that he can review what will be happening before he arrives at the hospital on Tuesday.
The work up week is extensive..They will take about 25 vials of blood to be tested. He will need a central line placed. There is kidney testing, heart testing, lung function testing...just about any testing you can imagine. We are preparing Elijah the best we know how. He has a doctor's kit that looks nothing like the fisher price model you can buy at Target. At least we have given him a chance to familiarize himself with some of the equipment that will be used.
He is no stranger to medical equipment and difficult procedures. Born with this life threatening condition (Schwachman Diamond Syndrome), Elijah has undergone countless blood draws, annual bone marrow biopsies, GCSF injections every other day (at a cost of $500 per shot.) His immune system does not function properly and he has remained on antibiotics to treat infections his whole life. His immunizations to pneumonia and common childhood illnesses do not work..his body doesn't build up immunities. And the bone marrow dysfunction is only part of this complex syndrome.
Elijah was born with an abnormally small rib cage which limits his capacity to take a deep breath. He was on a ventilator the first 5 months of his life and required oxygen until he was three years old. Because his lungs were so small, he had to breath very fast in order to get enough air. He often develops pneumonia and bronchial infections. The past two years, Elijah has not had to be hospitalized and we have been able to proactively treat his infections and pneumonias.
Elijah has pancreatic insufficiency as another complication of his SDS. He is fed through a g-tube and must take enzymes with each feeding to help allow his body to process the nutrients he gets. Kids with SDS are most often underweight and of small stature. Elijah is under the 5th percentile for height and weight despite the intensive intervention of doctors.
Elijah also has severe excema caused by the SDS. When he was a baby, his skin would flake off in sheets. When I met him for the first time and picked him up, I did not think I was touching skin. With lotion applied 3 times a day, his skin is much better now.
The bone marrow transplant could potentially cure his bone marrow and immune issues, but his pancreatic insufficiency, skeletal abnormalities, skin issues will remain. These are manageable and non life threatening.
So, Elijah has a reason to fear. He knows what is ahead. His autism in many ways, makes this experience so much harder. We can't explain to him what is going to happen in ways we know he will understand. He can't ask us questions and tell us what he is afraid. At the hospital yesterday, he melted down over the parking ramp numbers...P3..we don't know why..he couldn't tell us. His memory is so amazing, that I do not doubt that he has a negative memory attached to P3, he just can't tell us what it is.
And his autism, in many ways, makes this experience easier. I have not had to answer the question, "Am I going to die?" or even "Is it going to hurt?" Elijah can hyper focus on simple things and we may be able to keep him distracted from some of the tough stuff that will happen. We are already seeing blessings in his autism during this time.
But, harder or easier, it does not matter. It is what we have been given to deal with and will place our trust in Him..trusting that His faithfulness and love have always sustained us...and that he will not let us fall in these days ahead. It is not for us to figure out God's ways..to figure out why children suffer...our ways our not His ways. Our thoughts can not comprehend the plans God has in suffering. I believe that God is using suffering in the most powerful of ways. I pray that I will not stand in the way of his display.
at 9:21 AM