Sometimes it feels almost silly to ask people to pray for us, as if you all haven't done that for months... but today I am asking you to pray again. We have had a pretty good week this week, but there are a couple concerns on our hearts.
It's not that I haven't been honest, but I certainly haven't really shared how Caleb has been doing lately. The truth is, he's not doing that great. When we thought he was getting a new heart last week, we kept saying how it happened just in the nick of time. But then it didn't happen. Caleb has good days regularly, but he also has bad days regularly, and when you look at his health over the course of the last month or two, it's very easy to see how he has consistently trended down. He works really hard to breathe. His heart rate gets high too often, sometimes even when he's just laying down. He rarely gets out on the floor to walk around anymore and spends a lot of his time in his bed. He doesn't eat or drink anything other than water and he vomits daily; his gut isn't functioning well and those medicines hit his empty stomach and he pukes. The last few days, the doctors have said that his liver is starting to show signs of dysfunction, which can be expected because of how long he has had IV nutrition. They are checking his kidney function today. When a person has heart failure, eventually all the major organs start to shut down. The doctors have told us that there are still some adjustments to make and some things we can try, so we're not at the end of our options. But if he continues to do poorly, the next step they will take is to indefinitely sedate him and put him back on a ventilator so that his heart doesn't have to work so hard. When you're sleeping, your heart has less work to do. The idea of Caleb lying in a bed unconscious for the rest of this wait is a pretty hard pill to swallow. Again, we're not there yet, but that step is in sight.
This week Caleb had 3 good days in a row, and then a couple less-great days. On top of all this, the social worker came in with some potentially bad news... Medicaid is re-evaluating Caleb for his coverage. They were not supposed to do this for 12 months, but because it just so happened to be time to re-evaluate Jonah (who is on Hoosier Healthwise), they decided to re-evaluate Caleb as well. From what we've learned, Medicaid will do everything they can to NOT cover you. If they drop Caleb's coverage, he will have to go "inactive" on the transplant list until he gets coverage again. There is a conference call on Monday and our social workers are doing everything they can but we won't know the outcome until the middle of next week. Seeing that Caleb is getting sicker, the idea of an insurance issue keeping him off the transplant list for any period of time freaks me out.
Would you please pray with us that Caleb would get a heart this weekend? Before his body gets weaker and before insurance could drop him? Would you pray that God would move in the hearts of any parents this weekend who are faced with the option of donating their children's organs, that they would have the grace to say yes? Would you pray that we would not give in to fear and worry but enjoy our weekend with our boys while we wait for Monday to find out test results and insurance decisions? If Caleb could just get a heart this weekend, none of it would matter....
Caleb is such a trooper, and even though I know he feels badly, he is still a sweet, happy little boy. But he is also a boy that desperately needs a miracle. Please pray with us, ask your friends and church to pray, that God would provide a new heart for Caleb THIS WEEKEND. Knowing we have an army of Caleb supporters will keep our spirits up! Thank you for your love and prayers!