Last Friday Tessa had her fourth round of sclerotherapy. Earlier in the week her surgeon and I decided to do a clamp trial, and clamp her drains for 24 hours to see what the fluid would do as we seemed to be going in circles with no progress at all. Much to our surprise, the fluid didn’t do anything- just a little bit of swelling-until around hour 32. Then the area became really swollen and firm, but thankfully only caused her pain when I touched it. I unclamped her drains with a heavy heart, only to realize her drains were clogged and the fluid couldn’t drain back out. On Friday her radiologist did more sclerotherapy to a few pockets of fluid that had collected, aspirated any fluid that she could, and removed one drain. A lot of fluid was still hanging out in her lymphatic tissue, so we were hoping her remaining drain would remove it.
The good news: it looks like her drain did just that. 🙌🏻 She had over 400 ml of fluid come out of her drain on Saturday and all firmness is gone. More good news: her surgeons and radiologist do not feel that we will need to reopen her incision to try and stop the fluid (this was something that was being tossed about as an option. I couldn’t even imagine them cutting her open again). We all agree that it would be much better for Tessa to remove the remaining drain as soon as her fluid has decreased a little bit, and then treat any remaining fluid-filled areas as they arise. Tessa’s lymphatic system is very complicated, and she has many abnormal channels. She’s been treated with sclerotherapy since she was a baby, so I never expected us to locate and fix every leak in there. Right now, we are all just hoping to get her to a place where she is comfortable and only requiring sclerotherapy a few times a year- not every week.
The bad news: since surgery it has been hard to get to that balance again. Now that we removed a lot of the excess fluid that started to build up from clamping the drains, we are back to praying for her fluid output to decrease so we can safely remove her remaining drain. With the drains being in for this long, it has encouraged her body to continue making fluid. We are hoping that by removing one drain, we are encouraging her body to produce less fluid. Like I said, getting to that delicate balance is tricky. She is scheduled for another procedure this Friday: maybe more sclerotherapy if her output is still high, maybe drain removal if her output decreases. If it’s not too much to ask, please continue praying that the output decreases. Having one less drain is very nice, but having no drains would be even nicer. 😏
Trusting the Lord that the drain will come out!
May Lord give you the peace that surpasses all
Understanding. Most all May His will be done
It’s our absolute pleasure to be praying for our sweet girl. Her body is so unique and complex and God knows every single tissue, channel and drop of fluid <3