Wednesday, March 20, 2013

Finding Truth

Today was one of those days that I wasn’t sure I wanted to know the truth. If I could avoid hearing the truth, I could go on living like everything was fine. If I didn’t hear it, I could pretend like it didn’t exist. I think we all do this in some way or another, either consciously or subconsciously, with our children, in our marriage, in day to day life, with the problems in the world, with the overwhelming orphan crisis. Maybe hearing the truth about any of these problems makes us too sad, so we just avoid the truth.  Maybe we avoid hearing the truth because it makes it easier to pretend that the problems don’t exist. Maybe we avoid hearing the truth because then we would be forced to do something about it. Today was one of those days that I wasn’t sure I was prepared for the truth. I know we needed to know the truth about what was really going on in Max’s heart, but I wasn’t sure that I was going to be ready to accept the truth.

It was a very long day for all of us. Our day started with going down to the Cardiac MRI/ Cath Lab. After getting Max ready, I was able to hold him until the medication kicked in and he fell asleep.

There were no problems with the anesthesia and he was then taken for a Cardiac MRI. Once the MRI was complete, I was able to go back and see him and stay with him until his Heart Cath. He was intubated, paralyzed, and sedated, but I was able to hold his hand, rub his head, and talk to him for almost 2 hours.
Then they took him back for the cath……this was our moment of truth. The cath is what we have been waiting for since we brought him home. It was the cath that was to tell us what the prognosis was going to look like for Max.

I talked to our cardiologist here at BCH yesterday asking him what he thought we would likely find in the cath. He thought that we would very likely find very scrawny pulmonary arteries. This has been the fear all along. If we did, in fact, find that, the prognosis for Max would not be so great. If they would be able to do anything for him, it would be a very long process with MANY, MANY open heart surgeries in addition to the two that he has already had. Of course, this was not what any of us wanted, but we were prepared to face whatever we needed to for our son. We have already been down the road of tiny pulmonary arteries with Isaac. We were prepared to walk that path again if that is where God was leading us. God doesn’t always call us to the easy, but He does promise to be right there every step of the way. We have done difficult before, to say the least, and we were preparing our hearts for the difficult journey again, if that is where He was leading us.

Max did very well during the cath. He remained stable. They were able to coil some collaterals to help take some of the extra work off of his heart. They were able to extubate him successfully. There were 2 different times after the cath, while he was still in recovery, where he dropped his oxygen sats very low. The first time he dropped into the high 30s. There was some discussion as to whether or not it was accurate, but I was pretty sure that it was as his heart rate correlated and it had a nice pleth. A short time later, he dropped again, so we were now all convinced that the first time was also accurate, so they put a nasal cannula on just to give him a little extra help. Both times he was able to recover on his own, but it was thought that he needed a little extra oxygen to help him in the meantime. He was supposed to lay flat for 6 hours after his cath, but they broke the rules a little and let me hold him for awhile as it was the only way to keep him calm in recovery.

We are now back on the Cardiac floor, but not the ICU. Max seems to be feeling much better. I even got some smiles and giggles from him tonight.  These pictures were all taken when he was supposed to be laying still, but thankfully we were able to have some more cuddle time before bed.

Now for the truth……..are you ready for it? Our cardiologist here at BCH came into recovery to go over the combined results of the MRI and Cath. The results were the absolute best we could have prayed for…..Thank You God! Our cardiologist here said that he went into the cath thinking “doom and gloom”(his words). He was thinking that we were looking at worst case scenario, but it turns out that we were actually looking at the opposite. According to him, we caught all of the breaks. His pulmonary arteries are a decent size all the way through except for just the origin of the right pulmonary artery, which they will fix in the surgery anyway. His pulmonary pressure were low.  He thinks that it is likely that they will be able to do a full repair on Thursday. It doesn’t mean that he won’t need any more open heart surgeries. He will definitely need more, but most likely not for another 3-5 years or longer. BUT, the BEST news is that we can now have hope that we will likely get to watch our son grow up! We know that there is ALWAYS hope with God. We have seen Him do the imposible in the past. We know that He can and He does, but we are so thankful that at this time, He has chosen to give us the very best news we could have possibly hoped for. We were committed to love Max with all of our hearts for as long as God would allow us to keep him, but to think that it might actually be a lifetime is so incredibly overwhelming right now! I couldn’t have asked for more!
I am so thankful that God chose us to walk this road with Max. I am so thankful for the good news that we received today. I know that this journey is far from over. I know that the open heart surgery is still risky. We have been on this heart journey long enough and enough times to know that there are no guarantees. I know that we have a long road ahead of us, but to know that there is physical evidence of the hope that is in our hearts has been so emotionally overwhelming today.
Therefore my heart is glad, and my glory rejoices; 
My flesh also shall rest in hope. Psalm 16:8-10


  1. Wonderful news ! Praise God !

  2. Thank you for sharing your journey with the world!! May God be praised because if your testimony.

  3. Stephanie what great news I am so happy for you and your entire family. God is so good. Love you guys.

  4. Barbara Gourd-ShawMarch 20, 2013 at 8:17 AM

    Praise the Lord!!! God is so good. I have followed your journey with Isaac. I'm following your 2 new lil ones and am glad I cam share in the joy of such great news for Max. Love and prayers to your family.

  5. Tears of joy! Thank you God!!!

  6. I am so happy for this wonderful news, for Max to have such a God filled loving family and for you to have your son. All praise, glory and honor to our God.

  7. I love his blankets and think they are done with lots of love :-)! So happy to hear the great news and rejoicing with you! Love, Aunt Dawn

  8. Liz and Jonathan PorerMarch 21, 2013 at 1:15 AM

    We Love you Stephanie!... what you have gone through with Isaac, and now Max just is amazing!!.. your Faith just shows that you are a beautiful person and Max now will recover!, and have a wonderful life ahead of him!. :)

    We will be all Praying and this update is Awesome!, shows we have an Awesome GOD!!!... we are praying for all of you!!.. we know Max now will be stronger then ever!!!.. <3

  9. I had put off reading this because I was afraid of the emotional way it would touch me. I'm glad I finally did!! Praise God! It was sad to see his little face without a smile on it. You really don't have too many of those. I am so thankful that he doesn't have to be alone for this surgery and his mommy will be there when he wakes up. I'm praying for you and your family.