Last Wednesday Tessa had her 6th round of sclerotherapy. As usual, our favorite child life specialist, Amy, was there with all the fun things.
It was a really hard day that thankfully ended on a very happy note. While doing the procedure, her radiologist discovered that the big leak they had discovered on the lymphangiogram had finally scarred over. So it didn’t even need more sclerotherapy, and her radiologist felt comfortable removing the drain. Tessa has another area with some larger fluid-filled cysts, however, that isn’t related to that big leak. Her radiologist treated it with sclerotherapy, and left the medication in there, letting me know that her body would just absorb the medication. When Tessa woke up from sedation, she was screaming in pain from the medication. She screamed for a solid 50 minutes as everyone scrambled to try and get more pain meds for her and make her more comfortable. It was awful.
She eventually calmed down as the additional pan meds kicked in, and we went home. She slept almost the entire way and woke up with a smile. I found a little something in the hospital gift shop for everyone while she was having her procedure (for the no-tubie celebration of course) and Tess was so excited to hand them out and show them her tubie-less self. She was a little sore and still tired, but otherwise she felt great. She had a good night’s sleep, and felt even better the next day.
And she was just so excited to finally be free from drains.
The last three months have been full of numbers, flushing, cleaning, emptying, and changing bandages. She couldn’t go to the bathroom by herself or get a bath. She often got tangled in her drains at night. We had to be so careful not to get the tubes caught on anything. She had to endure countless covid tests, sedation, painful procedures, and daily medications. But she rarely complained. She continued to enjoy life in this modified manner and not let it keep her down. She became so accustomed to the drains that she would carry them around like they were little pets, swing them in circles, or call them “tubie explorers” when we were trying to untangle them at 3 in the morning. God gave Tessa the perfect personality to handle this life, and although at times it is very hard, she is constantly teaching me lessons through her contentment and resilience.
And a huge, enormous THANK YOU to everyone who continued praying for her, asking about her, and sending words of encouragement. ❤️ It kept us all going and we are so appreciative.
For now, we’ll keep a close eye on her to watch for any swelling or complications, and meet with her surgeon for a check up in a couple weeks. And then we’ll head to Florida- because we promised this girl that we would go back when she was able to swim. 😏
Love this tough girl🥰
Those 50 minutes must have felt like 50 hours 😞💔. So happy she is drain free!! ❣️🙏
Bye bye rubies! She is one tough cookie!!
I can only imagine your momma heart