The CT that wasn't

Fifteen minutes before we were scheduled to go down for a CT scan, the doctors decided to cancel it. Elijah had not had a fever of above 100.4 for 12 hours--and that was enough for them to cancel the tests. I had figured that was going to happen..but his temp sat at 100.3 for several hours this morning...I am beyond trying to convince them what I think they should do...I think they should have done the scan. So now, if they decide to do one again, they need to schedule it and it will take another day to get it all set up. He is not feeling well again..and his stomach seems distended and firm. That can meet that his liver is enlarged.

They have cultured everything except his nose that has been running for 10 days. I did ask them to culture that as well. I don't think they were convinced it was going to show anything. But, at least we can rule out one more thing.


Each day brings with it new challenges...one day can be a great one and the next one can be rough without explanation. I am learning from others who have gone down this road that this is the way things go...and so we will ride it out.


Sometimes I wonder if Mom's like me show up in the nightmares of the BMT doctors (or any specialist.) I try to remind myself often that this is what these docs do everyday. They know what they are doing...they know the BMT process. Within each room, there are kids with the simiilar symptoms, side effects and procedures needed. I trust that they know what they are doing. And yet, I am the expert on Elijah. I know him and God has entrusted him to me. I will advocate for them in the way that I know how. I will respectful and gracious, but I will not stop asking questions that need to be asked.

The doctors and nurses here have been excellent. They listen. They take the time that Elijah needs to be able to communicate. They take the time to get to know the little boy...not just the sick child. That is what family centered care is all about. I find it is the fellows (doctors studying a specific field) who struggle with what it means to be family centered. They are quick to answer questions with simple "canned" answers...they don't listen to what a parent's question is really asking. This maybe a skill that takes time to learn. It is vital. It means the world to me...to be listened to and respected as an expert in my child...my sweet little boy.  Some seem to speak as if Elijah is just another kid in the BMT..one who is doing better than some others..and so the concerns I have aren't heard because he looks so good when they walk in the room.  Elijah has always looked so good...we have heard that for life...but inside of his body is where the battle has always been...and he does not show the battle scars on the outside like others do. We aren't in the sprained ankle unit, we are in the BMT unit...and parents' concerns need to be heard. And no matter what is going on with a child (even if it is a sprained ankle) a parent just wants to know that they are being listened to. That is the basis of family centered care. I will leave this hospitalization with renewed vision and enthusiasm as I speak to health care providers on the subject of family centered care. We have seen it at it's finest and we have struggled with an "old school" mentality that says "I am the professional and you are just the parent."

Day +19: The homefront

The days are busy here...everything that needs to get done with Elijah takes time..and when we have a visitor stop by, the time goes by especialy fast! We are so thankful for the support and encouragement we have had over the last months. And for the most part, time goes by here at the hospital pretty quickly.

Even though Tyler's visit has been short, it has been a great one. We were able to slip away from the hospital yesterday while a friend spent time with Elijah at the hospital and a small army of staff at home held things down there. Mark, Tyler and I had an evening together that was so needed and such a blessing. I am so grateful that we have been able to have him home even if it has been for just a week.

I feel like I have been too absorbed in what it is like at the hospital. Mark has an incredible burden to bear at home. Even with help from nurses and other caregivers, there is still enough work for several people to do in one day. Sleep is never uninterrupted and the day begins early and ends late. Not only is he dealing with 9 kids but he is dealing with 9 kids who are missing their brother and Mom. In addition, our nurses and pca's (I hate to call them by their official titles because they really  are our friends) are also getting worn out from helping us out so much. They have been so amazing..they have gone well over and above what is expected of them. They have sacrificed their own spare time and talents to help us out in ways that we can never repay. We are humbled by their genorosity...

There is so much to manage at home that I just can't do from here. I bring some of the paperwork that needs to be done with me and I can make some phone calls and doctors appointments from here, but the rest has been up to Mark. There are countless people that are needed to coordinate the care of a household of kids with disabilities. There are financial concerns that need to be addressed. There is so much to be done...and Mark does it so well. But, he is overwhelmed and tired. He is torn between home and wanting to be here. He has to worry about nursing schedules and deal with conflict between the large number of people that cohabitate one home..it is inevitable that all those people under stress would start to crack under the pressure.

And so, please pray for Mark and for peace to permeate the walls at home. There isn't much that any one can do to ease the burden...so much of what needs to get done needs to be done by one of us. I pray that his spirit be renewed with energy and peace. He has a servant's heart and finds his treasure in the work God has called him to do. But, I sense his weariness...and only God can renew his strength.

I am so thankful that God's mercies are new each morning...and I pray that this morning brings a renewed sense of God's presence in the midst of struggle.