A new reality

I have been wanting to blog but I don’t have the time… literally.  These last few days since Caleb got out of ICU have been the busiest and most hectic days we have ever had in the hospital.  And that is saying something!  We kind of floated along in a fog of excitement and joy for a few days and now it’s down to business.  So many people have thought that since Caleb now has a new heart, this is all “over”.  That couldn’t be further from the truth!  While Caleb now has a strong, healthy heart, we are entering a whole new world post-transplant as we learn what all it takes to actually keep his new heart safe. 

Because Caleb’s new heart is foreign tissue, his immune system is designed to attack that heart.  This is called rejection and it is our new nemesis.  To prevent rejection, Caleb has to be on some powerful immunosuppression drugs to prevent his immune system from recognizing his heart as something to be attacked.  You may think that after the first few days, or weeks, the body will just accept his heart and forget about it.  Nope… Caleb will now be on medicine, life-sustaining medicine, every day for the rest of his life.  And not only that, but because his immune system will not be able to function like mine or yours, he will have certain restrictions to minimize his exposure to things that would cause infection.  For the next three months, Caleb will be in isolation, mostly confined to our house.  If all goes well, he will gradually be able to do more things, as long as he continues to have no rejection.  We keep telling ourselves, at least we get to be home, and be together.

In the meantime, caring for him day to day is intense.  Caleb is currently on 11 different medications for a total of TWENTY DOSES every single day.  We also have to check his blood pressure and temperature and heart rate twice a day.  He has to go to Riley every week for echos and blood work, not to mention routine heart biopsies and catheterizations.  We have so much to learn right now, which is part of why life is hectic.  We have class every day to learn all Caleb’s different meds: this med has to be taken with food, this med can’t be taken with food, this med needs to be taken at least 2 hours after this med, and so on.  Then there’s all the side effects and drug interactions.  Right now it feels like we are just giving him medicine all day long!  Eventually, over the next couple of years, the meds will be consolidated and a couple hopefully can be eliminated.  The hope is that by the time he goes to kindergarten, he is only taking meds at 7:00 a.m. and 7:00 p.m.  But that’s a long way from now. 

Caleb is doing really well medically!  We are so thrilled to see him be able to walk around and not get short of breath.  He is eating like a champ!  He pretty much eats all day long!  He needs to drink more, though.  His fluid intake is the only reason we’re still in the hospital… he isn’t drinking much.  Praying for thirst!!  Today in physical therapy he was able to go longer than he has so far and I was really proud of him.  Just to think, soon he’ll be running!

Besides how overwhelming all of his care is, the hardest thing right now is managing Caleb’s mood and emotions.  He is extremely volatile.  This is for a couple reasons; one, he has so many steroids pumping through his body (as part of his immune suppression) and he literally has “roid rage”.  He cries and falls apart every few minutes, over seemingly nothing.  It’s hard to help him get control of himself, which he really isn’t able to do.  He seems miserable at times, poor thing.  Secondly, his world has been totally disrupted in the last week and he has so much to adjust to and recover from.  He doesn’t understand everything that’s happening to him and he is constantly fearful of “owies”.  So we are all day long trying to learn how to care for him while at the same time trying to help him simply cope with his day.  It’s exhausting.  I have been told, many times, to be prepared for how intense post-transplant life is in the beginning, but I don’t think anything could have prepared me for this!  I just keep telling myself that someday life will settle down, he will adjust, we will get comfortable with our new life and this will all be wonderfully worth it.  God, give us the endurance and patience to do what we have to do, because this is the biggest responsibility I have ever had.  And I’m getting ready to have a new baby too…

I’m certainly not writing this to burst your bubble.  We are SOOOO thankful for the gift God has given us and Caleb and so excited that he has another chance at life!  What a miracle!  I just needed to communicate what this life looks like right now so you can keep praying.  A friend innocently hugged me and told me how good it felt to cross Caleb off her prayer list and I had to restrain myself from grabbing her and shaking her and desperately begging her NOT to stop.  We need prayer now as much as ever!  God will carry us through these new trials, we know He will, and we accept the path He has for our family.  We need to continue to walk this path with confidence in Him and a bold expectation that He will answer our prayers.

We miss Jonah and he misses us.  Fortunately it is only a few short days until Caleb is discharged to the Ronald McDonald House where he will stay with us, in our apartment, for the next few weeks.  And Jonah can be with us then, woo hoo!  We have some new toys just waiting for them.  If all goes well, Caleb will be discharged Saturday!!!  J  First though we have to prove our competence with a 24-hour “demonstration of care”, starting tomorrow at 3:00 p.m. where Daniel and I have to care for Caleb totally on our own while the nurses observe us and make sure we are ready.  Then, as long as he’s drinking enough fluids, he’s all ours.  What a wonderful and (slightly terrifying) thought!