Tessa had her 5th round of sclerotherapy last Friday. The week before, her radiologist mentioned that we might want to consider getting an MR lymphangiogram to exactly pin point Tessa’s lymphatic leaks. It’s less invasive than a regular lymphangiogram, which takes about 6 hours and requires an incision in the foot. An MR lymphangiogram is much like an MRI- it only takes a couple of hours and 4 tiny needles inserted in the foot (meaning no stitches). Usually it takes months to get an appointment. A few days after our radiologist mentioned it to us, however, the doctor who performs the MR lymphangiogram approached her asking if she had any patients who needed one because he had an opening Friday morning. And guess who was already on the schedule first thing Friday morning for sclerotherapy? Our girl.
God just reminding us that He’s still taking care of her.
Friday was a long day. Her lymphangiogram ended up taking closer to 3 hours as her lymphatic system is so complex and they took thousands of images, but her doctors were able to clearly spot a big leak. From there they moved Tessa right down to radiology to have sclerotherapy done on that area. Her radiologist also removed her drain and inserted a new one in a different spot right next to the leak. She told us we had three outcomes:
1.- Friday’s sclerotherapy worked to stop the leak and her drain would get less and less as it scars down.
2.- If the drain output doesn’t continually decrease, she may need a couple more rounds of sclerotherapy to scar down the leak.
3.- If the drain output remains high, she will need another small surgery to cauterize the leak.
So far it looks like we have ruled out option #3, which is a huge relief. No one wants to go back to surgery right now. Her output has decreased- she has consistently been under 100 ml- but we’re waiting to see if it will come down even further. If it comes down by next week, we may finally be saying goodbye to the drain. If it keeps hovering around 80-90 ml, she will probably be getting more sclerotherapy next week to see if the leak can be scarred down some more.
If I’m being honest, I feel like all we’ve been doing for the past 2 1/2 months is waiting. Waiting for her incisions to heal. Waiting for swelling to come down. Waiting for medicine to take affect. And waiting, waiting, and more waiting for her drain output to decrease.
Waiting is hard.
The other night I was reading about Joseph in Grace’s Bible book. Joseph waited for two years for Pharoah’s butler to remember him. He had no idea what the big picture was for his life, but he continued working hard and trusting God. I have no idea what the big picture is for Tessa’s life, but I am so incredibly thankful that I know who is in charge of creating that picture. Do I forget this and get frustrated while waiting? 100% YES. I want her drains out now. I want her to be free from pain. I want a break from being at Mayo. I want her to be able to go to school normally and get back to life as a 5 year old. But I also know that God is teaching me many lessons during the waiting. And that is what keeps me going, keeps me hoping, and keeps me on my knees.
“Now may the God of peace who brought up our Lord Jesus from the dead, that great Shepherd of the sheep, though the blood of the everlasting covenant, make you complete in every good work to do His will, working in you what is well pleasing in His sight, through Jesus Christ, to whom be glory forever and ever. Amen.” Hebrews 13:20-21
AMEN❣️
And as we wait prayers go up!🙏❤️🦋
Your perspective is continually such an example! We love you all, and are so proud of sweet Tess. She really is so tough 💚
We are praying in Pennsylvania. Sending love
We continue to keep you all in our prayers. Hugs all around.