Ready for discharge...I think..

Well, I am not sure how I feel about leaving the hospital. We have cleared out most of the stuff that had accumulated in the room in the past 2 1/2 months. We have started to say our goodbyes and make check lists of questions we need answered. I am not sure what to think.. But, when I weigh it out, it sounds like it is feasible. We spoke with the ENT and Infectious Disease Doctors..The attending doctor (who sees patients at the hospital for two weeks at a time) is the head of the department, Dr. John Wagner. He is super nice, obviously knowledgeable and really willing to listen. Elijah still has adenovirus as I have mentioned. He also has diarrhea that looks suspicious of C-diff...something common to acquire if you are on lots of rounds of antibiotics. He is leaving the hospital with 29 prescription meds to be filled by the pharmacists here. His blood pressure is up and has required medication to bring it down and his temp is not high but seems to be inching up.

So, you can see why I am a bit apprehensive....but (and here is the internal list I keep repeating to myself)...we are five minutes from the hospital. We can check his temp and blood pressures as much as needed. We have 24 hour access to doctors if needed. We can be readmitted at anytime. We have PHS (pediatric home service) that is coming to set up IV and TPN feedings...and they are always available on call with questions.We go into the clinic every day for labs, cultures, weight checks or anything else needed.
I think we will be just fine. really I do. I think...

day +56: uncertain discharge plans

All of Elijah's favorite nurses and care providers are working today..yet another gift! The doctors just came by with a look of apprehension on their faces. The adenovirus was still found in his blood, urine and stool. The levels had actually increased quite a bit since the last study. Clinically, he looks great. But, his body is still fighting this unpredictable virus. They are consulting the infectious disease staff to see what they recommend. He could possibly leave on Cidofovir...the medication that treats adenovirus. But this med is the one that is hard on the kidneys. It is given intravenously and is about a three hour process. Blood levels and kidney function tests are essential.

I have expressed to them that we will stay if they feel that would be best...and if they feel it would be safe for him to be outside of these walls, we would do that as well. We have come this far, I don't want to be taking any unneccesary chances.

He has been talking about going out of the room a lot this morning..his dreams are not big..just wants to get out and see the 6th floor  and see the pictures on the wall. Then he wants to go potty in the bathroom on the 2nd floor. He doesn't ask for much! He is even wearing shoes for the first time in months...and was so excited to put them on. He hasn't been out of the room for weeks now and if he stays, he will still be in isolation. If they do decide to keep him, please pray that he his little heart will not be crushed.
I will keep you updated...

Discharge and the cross...

Elijah's temp is stable..and discharge plans are still on. We have the choice to leave today, or anytime over the weekend. Because we are comfortable with administering IV meds and TPN feedings through his port, it is up to us. Lord willing, we will pack things up and leave this afternoon. I get goosebumps just typing the words...

 Getting some red blood cells for the road..these are the kinds of last minute things that get done around here!

I am nervous. I am overwhelmed with praise. I am grieving. I am giddy. I am in awe of God's touch upon our precious son's life. I am aware that this is just a transition..not the final chapter in this BMT journey. I am amazed as I look around and try to imagine how we made it through a 9 1/2 week hospital stay while caring for 9 1/2 children (I am counting Tyler as 1/2 because he about that much self sufficient~!)
I have a lot of questions racing through my head..it takes so much planning to set up a hospital room in a rented apartment on a college campus. As I was making my lists, removing the precious artwork that Elijah's friends and brothers and sisters had drawn for him, I could not shake the feeling of grief.

I felt grief over the loss of time with our other children...
Maisy turns four next week. Where did three go?
Jordan started to play football for the first time...I wasn't there..
Life kept going on at home without us..
It seems that joy and grief are close friends...the odd couple of friends..
but when I see one of them stopping by..I know the other is not far behind.

And just as the waves of grief were rolling in, Elijah and I were given something so spectacular. A sunset so bright its rays of light filled our hospital room. The rainbows it created bounced off the walls...the IV poles, the sterile sorroundings. It was a light show like nothing I had never seen..or had the eyes to see in such a way before.

And as the sun began to set, it slid behind the cross...illuminating it. The cross...I could barely see it before..without the light. That is just what I prayed for all along..that God's story of faithfulness through Elijah's life would illuminate the cross. I prayed that everything else that did not matter would be drowned out by the light of the cross...

The grief was gone...in that instant...

There was no more grieving over suffering that my little boy has endured..the victory of life and death has already been won. Our hope is in the cross. God has shown his grace and mercy through Elijah's journey. He has wiped our tears..he has held our trembling hand..he has listened to our hearts..and given us peace when it made no sense to have it.

There was no more grieving over lost time with my other children...we have Jesus. How silly it would be to grieve the mundane, when we have been given a chance to show our kids what faith looks like when life gets tough. Our faith has grown together even though we have been apart....God has taught them so much more in these last months than I could have ever have in a lifetime. 10 lifetimes...

Few moments have been wasted on the unimportant as we faced this battle. I want to have just one desire and that is to live my life in a way that reflects my faith in a God who is so worthy...and on the eve of discharge..I saw it with my own eyes.

We have a kind and compassionate Father who scooped us up and held us tightly through this journey. He will not let us out of his tender grip...he has been so near to each of us...reminding us of his never failing love and compassion. He has carried Elijah through the pain, the struggle and the fear...and there are just no words to express the praise that fills my heart...

In an effort to share this story, I am reflected in His light...
This journey is not about us...but it's all about His story that is written through our lives...

...and may it be that my words and actions reflect the light that illuminates the cross.

...pointing to the cross..that is where I want to be and what I want to do..for as long as I live.