Elijah's fever was not gone for long. He is so emotional--happy, sobbing, silly, sad all in one hour. He has been going strong since 3:30 am when he woke up. Surprisingly, I have too, but am looking forward to naptime around here. Of course, then several of the other kids will probably be arriving right at that time. I can't wait to see them--so naptime for me will have to wait.
The website for the hospital tells the story of several different families and their journeys through the BMT process. I read them all before we arrived..but somehow, they didn't have quite the same meaning as they do when I have actually walked the same steps after them. One mom said that she lost hair and gained weight..that makes me laugh! Watching my hair fall out every time I take a shower reminds of the stress that all of us are experiencing and how it effects our whole being..emotionally and physically.
Another parent spoke of the mixed emotions that they felt when the doctors talked of discharge. Most parents anticipate this day as the news they have been waiting for. But when the day comes, there are often mixed feelings. Kids don't leave the BMT healthy and strong. They leave with ports and often TPN feeings (parents need to be trained to run new pumps and administer new meds.) They leave only to have to return to clinic daily in the beginning for labwork and weight checks. The thought of not having nurses and other medical professionals right there like at the hospital can be overwhelming and scary. Much of the time, parents are not going to their own home. Instead they will spend months at the Ronald McDonald house (if they are lucky) or an apartment or hotel close to the hospital. It is another change for everyone...and while it is a step in the right direction, it can be a difficult transition at first.
We are thankful to have a good level of comfort dealing with pumps, IV lines and dressing changes. But, even with the experience we have, the first time we talked to the discharge coordinator, I felt a wave of insecurity. There are so many unkowns in this next step of Elijah's recovery. While I looked so forward to hearing that we may soon be leaving, I also felt some loss...we have developed relationships with so many people on the unit. And it will be hard to say goodbye. They have been here when we needed them most...and those are the kinds of relationships that are hard to let go of. There are no talks of discharge for Elijah since he fever has returned yet again, but, the next time I hear talk of discharge planning, they will be welcome words!
Parents need each other. Sometimes, it just takes the listening ear of some one who has "been there."
Sometimes, it is just the affirmation that others really did make it through and are going strong after an experience like this one. I am thankful for those who have gone before us and for their willingness to share their stories. And I just pray that God will use us to encourage others coming after us in this journey...