The nurse typed up a list of the medications that he is receiving everyday...get ready, it's long:
Amlodipine
Bedsonide
Cefazolin
Ancef
Cetirizine
Cyclosporine
GCSF
Furosemide
Immune Globulin Growth factor
Lorazepam
Cellcept
Zofran
Protonix
Actigall
Vorconazole
Acetaminophen
Benadryl
Fentanyl
Hydralazine
TPN feeds
Other IV Fluids
Wow, imagine one little boy handling all of this in his system to help him get through this transplant. I am amazed at the medical advances that have been made in just the last few years. This whole process is so complex and yet, when broken down is so elemental.
Our bodies are fighting machines..defending us from attack. If we can disarm the our own fighters in the body (w/ chemo and immunosuppresants) and create an environment that will allow the "enemy" cells to win the battle...ultimately the battle is won by all. It is fascinating. It is miraculous.
I think about this time in a long hospitalization, things start to muddle together. The days start to run into each other and it is easy to feel disoriented and a bit dazed. I think we are at that point. I have to write down the day of the week on our white board in the room to remind myself. I have notepads everywhere just trying to make sure we don't forget things...like the day when we forgot to bring one of the kids up to camp for the week! The kids are having a hard time getting perspective on the season...this is a summer like no other at our house.
Yesterday, an organization started by a young girl and her family (Jen's Joy) hosted a beach party for the kids. Because all of the kids are in isolation, they brought a party in a sand pail to each room...complete with decorations, crafts, sunglasses and ice cream. They sent a face painter and caricature artist to each room. That was a different experience for them having to dray pictures of the kids while wearing gloves and an isolation gown. It was a nice break for Elijah and Kaden. It breaks the days up to have something as simple as a party in a pail to entertain the kids. Today, McKenna and Maisy played with the beach balls and sunglasses and were entertained as well. The gift just keeps on giving...
It is so nice to have Tyler home. He has been able to spend some time at the hospital and is reconnecting with friends. He is going to make us a traditional meal from Kenya one evening next week. For now, catching up on his sleep and fast food consumption is keeping him busy.
Kaden worries so much about Elijah. He talks about "100 days" often...100 days is one of the big milestone dates that give us a good indication if the transplant was successful. Kaden is wishing that it was day 100 and not day 13. Please pray for his tender heart...that he would not waste a minute of his days anxiously worrying about his little brother. And I think all the kids are missing time all together as a family.
When Elijah is not feeling well, it is difficult to watch him struggle..to suffer. What makes it more difficult, is that he was born with suffering and he doesn't know that what he is going through is not normal. Suffering and struggles have been so much a part of his life since the day he was born. He has been through so much, and it is not in his own strength that he has fought this battle...our sweet Elijah has dealt with weakness...and it is in his weakness, that God has truly shown his power and might. And it is through God's people, that we have seen the incredible expression of love and compassion. Elijah has not suffered alone in this journey...and we have not rejoiced alone... we have not praised God alone...as we stand in awe at the way God has answered our prayers! We are so grateful for those who have stood alongside us in this journey...
So that there should be no division in the body, but that its parts should have equal concern for each other. If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it [1 Corinthians 12:25-26].
