Day 65: The saga continues

Sorry for the inactivity on the blog but we've all been really busy helping Tessa heal and get back to her old self. I know that some people have been wondering what's been going on the last few weeks and to be honest, there weren't any real notable events to write about...just steady improvement in terms of Tessa's physical, mental and verbal status...until the last few days. We thought we were on pretty solid footing there for awhile but we've run into another ongoing issue unfortunately.

Tessa has been very happy at home...getting back into a routine...dialysis thrice a week and the therapy has been going really well. She's been much more vocal and her vocabulary seems to have grown tremendously now incorporating words like "dialysis", "hospital", "medicine", "BP" (blood pressure), etc...The last few months she has spent so much more time in the company of adults than in the company of other kids her age that's she's absorbed words that other kids wouldn't or shouldn't need to know. She has also matured so much throughout this whole experience. The amount of patience she has with taking her meds and going to dialysis at the crack of dawn every other day is astounding. We're constantly amazed by her resilience. She has been more energetic...especially after dialysis when her toxicity levels are lower and she's silly and cute like a 2 1/2 year old girl should.

Unfortunately her kidneys are still not doing a great job of flushing out fluids or filtering toxins and last week, there was so much excess fluid in her system that it started to affect her lungs. Even with regulated fluid intake we're having trouble keeping her dry enough. Last night we had to make a trip to the ER because her breathing was uncomfortably rapid. She did calm down eventually and her breathing slowed enough for us to go home and wait until this morning's dialysis treatment when they took more fluid off. However, the docs are still concerned and want to monitor her more closely. As a result, she's going to be re-admitted back into the hospital tomorrow to get dialysed again (back-to-back days) and hang out for awhile so that they can keep a closer eye on her.

Obviously we're all a bit discouraged about this latest hiccup as we seemed to be getting back into a groove and the last thing we wanted to do was put Tessa back into the hospital environment which already had a pretty traumatic effect on her. But I'm confident that with another dialysis treatment and getting back on the diuretic, we'll figure out how to maintain a healthy fluid balance.

The one biggest positive out of this latest chapter is that the last couple X-rays have shown that the air pocket in Tessa's lung that developed back in the ICU is no longer showing up so we're relieved about that.

I'll do another update tomorrow after we have a better sense for where things are and I'll make an effort to put up some recent pictures of Tessa.

Again, sorry for the gap in updates and thank you all so much for the ongoing support. It's great to know that so many people are thinking about Tessa and praying for her to get better. We truly appreciate it!