Saturday, March 30, 2013

Kinnaird, party of five

Well, at least the adults are looking at the camera.  I know I haven't posted pictures in a while and this was my attempt to get a good picture of my family.  It was the best we could do.  

Today was Daniel's birthday and we had a great day.  It made me appreciate my husband for about the millionth time since we've been in the hospital; if we're still here on MY birthday, I will probably be a little grouchy about it.  But not Daniel- he had a good day, even though the extent of his birthday celebration was cinnamon rolls for breakfast and a dance party with our kids.  OK, that is pretty awesome.  And we had lunch with my family, and that's pretty awesome too.

Caleb has been doing fairly well.  He has had a couple bad days here and there, days where he is working really hard to breathe and retaining a lot of fluid.  We are really thankful for his improvement since a few weeks ago.  He continues to put on weight and his cheeks are getting so fat that they make me laugh just looking at them.  I know some of it is him retaining water, but some of that is also legitimate weight gain.  Whatever it is, it's super cute.  I love this kid.  Here he is wearing Incredible Hulk hands.

On Monday we will have been in this hospital for 5 whole months.  I never would have dreamed that would be the case.  I keep thinking surely he will get a heart soon, it's GOT to be soon.  I honestly have to choose not to think about it, because if I start thinking about how badly I want it to happen, I start to feel this desperate feeling that actually hurts.  It physically makes me ache.  So I just put it out of my head the best I can.  Overall, we are doing well.  We have a lot of fun together and that makes the days here enjoyable and not sad.  Also, we have so much to look forward to!  Caleb WILL get a heart, we will go home to our new house, we will have a life again outside the hospital... 

Aaaaaaaand we're going to have another baby!  That's right, we thought life was getting a little boring and maybe we should add some excitement.  :)  In truth, we've wanted to have another child and have always tried to plan around Caleb's stuff.  Then we finally decided, forget it, we have to keep living!  We have no idea what our future looks like and if Caleb has proven anything, it's that we have no control whatsoever over his journey.  So we went for it!  And we are SO excited!  And so are the boys.  Everyone is sort of rooting for a girl, but a family with 3 brothers seems pretty stinking great too.  Either way, this baby has already brought us so much joy and excitement and it's just another assurance that we have wonderful days (even if they are exhausting days!) ahead of us.

Here are some specific prayer requests we have right now:
1- Please pray for this issue of Caleb retaining fluids.  For the last week, it's been a daily issue.  Please pray for that to improve.
2- Pray for Daniel's job.  This is his busiest time of year and you can't even imagine what his day looks like.  He is with his family every waking minute and starts work as soon as the boys go to sleep.  He has an awesome attitude but he is getting so weary.  Please pray for energy and stamina and focus!
3- Please pray for me as I'm carrying a baby through all this.  I am 8 weeks along and mostly just feel tired.  Fortunately we have tons of support and I take a nap every day.  How spoiled am I?  It's not too shabby to have awesome nurses who say, "Why don't you lay down, I'll change Caleb's diaper".  

Thanks for your continued prayers!  And Happy Easter!  

Monday, March 18, 2013

Just a servant

I completely realize that you could chalk up what I'm about to tell you to just about anything... you could say it is luck, or medical science, or whatever it is you believe in.  But I'm confident that the reason my news is all good is because of the work of God in the life of my family. 

First off, our insurance issues are completely resolved.  Caleb's disability insurance got re-authorized and his coverage never lapsed.  We didn't even have to use our backup plan!  He still has the "Cadillac" of insurance coverage... ALL of his bills related to his transplant will be 100% covered by Medicaid.

Second, Caleb's liver issues have greatly improved, to the doctors' pleasant surprise.  Today his numbers looked so good that they could go back up on his TPN (that's his IV nutrition).  His kidneys look completely fine.  He shows no signs of other organs failing because of his poor heart funtion.

Third, Caleb's energy level and appetite have increased.  He has been out of bed to play and walk every single day for the past week, with no problems.  And he has started to show interest in food again, even if it is tiny bites here and there.  For lunch he had 3 grapes and I was SO proud of him.  For supper he had one pepperoni, one bite of a breadstick, and 2 ounces of Sprite, and we were thrilled.  This may seem like nothing, but it is a victory for Caleb, considering how many weeks he went without eating or drinking anything besides water.

Last week, I was praying desperately for God to have mercy on Caleb and give him a heart that very day.  And while I was praying that, over and over saying "Please God, have mercy on him", God responded, "I am having mercy on Caleb.  You don't always recognize My mercy."  Caleb may not have gotten a heart yet, but God IS merciful to us and is continuing to keep my son going and giving us help in many ways.  We know in our hearts that God's mercy is the reason Caleb is still alive and the reason I can tell you that he is doing much better.  Thank you for your prayers!  They are powerful and effective.

You know, I've had several conversations about just how many people are praying for Caleb... there are thousands of people, all over the world.  One thing people say to me sometimes is that it's hard to imagine how thousands of people are praying for Caleb and yet he still doesn't have a new heart.  To me, that is pretty easy to understand.  See, every day we see ways that God is active in our life and using us and Caleb along the way.  For example, let me tell you a crazy little story.  Daniel works for a Christian missions organization, working with missionaries all over the world.  One day he was on the phone with a missionary in Costa Rica, and he shared with Daniel about a family that needed prayer.  The couple had just found out that their unborn baby had a heart defect and they didn't even expect the child to live.  The couple were Costa Rican, but they were serving as missionaires in Bosnia where medical technology was not very available.  Daniel got off the phone and started praying for them, and as he prayed, he felt overwhemed with grief for them.  Because of all we'd already gone through with Caleb, Daniel knew the fear and disappointment they must be feeling and he begged God to provide for them.

As months went on, many people were praying for this family as well.  Well, someone from the U.S. heard about their situation and generously paid for them to come to the U.S., helped them to get visas, and to get the kind of medical help they needed.  Their daughter was born here in the U.S. and after being at a children's hospital in Oklahoma for a while, a friend of a friend offered for them to stay in a missionary house in Valporaiso and guess what.... they ended up at Riley.  Four doors down from our room.  And they are now our dear friends and a great encouragement to us.  It's so crazy to think that in the whole wide world, this family that we prayed for ended up right next door, at the same time we were in the hospital.  The missionary house where they live is 2 and 1/2 hours away from the hospital and they are only able to stay there for one year, the lease ends in a few weeks.  When they shared that with us, both Daniel and I immediately thought about offering them to come stay in our house, our old house which hasn't sold yet (much to our frustration, but isn't God interesting the way He works?).  They were thrilled... our house is less than an hour from the hospital and they can be near new friends.  They will probably be discharged from the hospital in the next few weeks, but their daughter cannot fly home to Costa Rica yet because she will need ongoing care for several months.  So in that time, they will be living in our hometown, in our house.

If Caleb had gotten a heart back a few months ago, we would never have gotten to know the Espinozas.  We never would have been able to offer them to move to our house.  And there are so many other things every day that help us see how God is not late in answering our prayers.  He is always using our circumstances for His purposes, and we are just His servants to submit to what He lays out in front of us.  That's what I have been praying this week... I'm your servant, Lord.  I'm your servant in this hospital.  I'm your servant at the Ronald McDonald House.  I'm your servant in this family.  I'm your servant wherever you put me.  If I hold on too tightly to what I want God to do for ME, I will miss out on what He wants me to do for HIM. 

Friday, March 8, 2013

A growing urgency

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!