Decisions, decisions

It’s crazy how a routine appointment can turn your whole world upside down in a matter of seconds. It happened at my 18 week OB appointment when Tim and I went in to find out the sex of our baby. A routine ultrasound turned in to a day at the hospital seeing several different doctors and learning that our son has two heart defects. And it happened today, at a monthly hematology appointment. A routine blood draw turned into a call to Mason’s cardiologist and an appointment with his cardiologist next Tuesday.

When Mason had his first blood draw to test his platelets, the count was 93,000. With the second blood draw, his count was 83,000. The lowest count in the normal range is 150,000. Anything under 50,000 is very concerning. Today, he had his blood drawn and his count was 27,000. The doctor was shocked. I can’t begin to explain the panic that consumed me when I heard that number. Does that mean he has Leukemia? I held on to the doctor’s every word until she said that his white blood cell count was normal. Thank God! Not cancer. Why is his platelet count so low then? The doctor still believes it’s because of his heart defects. She also believes it’s his body saying that it may be time for open heart surgery. She called his cardiologist and he too is concerned. Concerned enough to move our Oct. 30th appointment up to next Tuesday Sept. 16th. 

In my gut, I’ve been feeling that it’s time for Mason to have surgery. The older he gets, the farther he falls behind developmentally. He is just too tired to move, to crawl, to sit up for long periods of time, etc. His breathing has gotten heavier too. He used to just breathe hard during therapy but now he breathes harder all the time. He also is not growing. It takes so much for him to move, play, and eat, that he’s burning too many calories. Now we have another sign that his body is ready for surgery. He can’t keep platelets. If his count drops below 10,000 he will need platelet transplants. For platelet transplants he would need to sit with an IV in his arm for an hour. I am praying it doesn’t come to that! He will now see the hematologist weekly to monitor his platelet count. 

On the flip side, Mason’s cardiologist keeps pushing his heart surgery back because he has not gained enough weight. Ideally, he would like him to be around 22-25 pounds. Currently, he’s around 17 pounds. During our latest appointment, our cardiologist expressed that the last thing he would want to happen is for the surgeon to open Mason up and then wish that we had waited longer for his heart to grow bigger. We have been very blessed to have time on our hands with this surgery. Mason’s two heart defects counteract each other. It is not lost on me how rare this is and I can only thank God for his faithfulness and detailed care for Mason. 

Even though we’ve had time on our hands, I feel that his body is telling us that our time is up. I hate that when I look at his face I see so many petechia spots and am constantly reminded that his body is failing him. 

side petechia

front petechia

 

close petechia

 

I’m praying that when we see the cardiologist he will say it’s time to go ahead with the surgery. How strange it is to want your baby to have open heart surgery. If the cardiologist wants to wait, then Tim and I have a big decision to make. Do we push for the surgery or do we trust the cardiologist and wait? Are platelet transfusions worth waiting for Mason’s heart to grow? First it was his growth that was affected by his heart defects, then his development, his breathing, and now his platelet count. What else might happen if we wait? How bad will it get? 

I know God has the answers to all of these questions. I know God has a perfect plan for Mason’s life. A plan full of a future and a hope (Jeremiah 29:11). I trust in God’s perfect timing. I trust that God will work through Mason’s team of doctors and give them wisdom on when Mason should have surgery. But, I’m human and I’m scared. The thought of doctors whisking Mason off for open heart surgery shakes me to the very core. It breaks my heart over and over again. But, I know God will give all of us strength and grace to get through it. Mason is tough and will come out of this stronger and healthier. And that makes it all worth it. 

3 thoughts on “Decisions, decisions

  1. Dad Wilson says:

    Nicole, our hearts go out to the little guy and to you and Tim every time we hear of a new challenge that you are facing. We know that, no matter what you see, feel, or experience in this natural world, Jesus is there in spirit, watching over Mason, strenghthening all or you, pouring His grace into your lives. In addition to strength and wisdom and all that you have expressed, my prayer for you is that our Lord and Savior would make Himself known to your hearts and spirits as never before with each step that you take on this journey that He has uniquely crafted for your family. One day Mason will come to know Jesus himself — I can almost see his smiling face gazing into our Savior’s glory — and one day we will see our Lord face-to-face. At that hour we’ll all understand how He has used your walk of faith for His glory and how through it all, He has prepared you, Tim, and Mason to reign forever with Him in His kingdom. We join our faith with yours throughout this episode and thank God in advance for a full recovery for Mason’s little heart, regardless of when the surgery may take place. “Trust in the Lord with all your heart, and lean not unto your own understanding …” Wait quietly on Him, and you wll know in your hearts what to do. Love, Dad W.

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