Eryn's Back in the Hospital

This is a long overdue update on Eryn.

Eryn has been diagnosed with mild Kidney Disease. In December when we took her into the ER for bloody stool we found out that her kidneys were suffering a great deal. We found during her stay at the hospital and thereafter that her kidney function improved greatly by keeping her bladder empty. So we have been working with Urology on a very regular basis to try and resolve the issue of her poorly emptying bladder. We have no real diagnosis to explain why she can't empty her bladder. We have done multiple tests, with no real answers. So the best we can do is try to keep her going to the bathroom regularly (even though she doesn't always feel the need to go), and finish emptying her bladder through a tube. She has had a suprapubic catheter placed for the past three months. This is a tube that comes out of her bladder through her belly. The tube had an on-off switch, so she could be bag-free in the day. She became very comfortable with this and would simply open the tubing after peeing on the potty (as long as she made it in time). That would ensure that she was completely empty. The problems we ran into with the suprapubic catheter were: that it needed to be changed out every 6 weeks (not a permanent solution) and each time she had to get it changed she had to go under anesthesia, then we would also have accidents with the tubing (twice we accidentally cut it with scissors, and it got pulled on really hard). Our goal during the time she had the suprapubic catheter was to teach her how to catheterize herself (through her urethra). This was a very stressful process. Sometimes after practicing I would just break down crying because it was so hard. She hated it and spent the entire time fighting me. I also hated it and felt like my attempts were pointless. The Nurse Practitioner we have been working with is wonderful. I couldn't imagine working with anyone better and she also ran into major difficulty working with Eryn to place the catheter. We started seeing a child psychologist who was very helpful. She helped us to eliminate the stress involved by setting boundaries and creating incentives for Eryn. Even with all of the help we were getting we still were unable to get a catheter in. Eryn had such a terror/fear of putting it in. We feel like the fear came from bad experiences where a catheter was placed in the hospital and ER. At those times her bladder was so over-filled that it was probably tilted and it took the professionals quite a few tries to get it in. The trauma from those experiences stayed with her and she could not imagine inflicting the same pain on herself.

So. . . here we are in the hospital recovering from surgery. We decided with the team of Urologists that the best thing for Eryn long-term was to place a Monte Stoma. The stoma is a little hole in her belly button that a catheter can slide through to empty the bladder. From what we hear these catheterizable ports can be very convenient. Our hope is that Eryn can really get back to some sense of normalcy and at the same time manage the health of her body.

Eryn is now recovering from surgery and doing pretty well. We are concerned about one of her feet that has not gone back to normal since coming out of surgery. It is turning in and she can't move it properly or place pressure on it to walk. It looks like she may have had her leg positioned during surgery in a way that put pressure on a nerve going down the side of her calf. Hopefully with some physical therapy and time it will go back to normal. Until then, she may need to use a walker.

In the mean time, Eryn has enjoyed visits from family and friends who are concerned for her. Her cousin Ileina was just here pushing her in her wheelchair and playing games with her. She brought Eryn a lot of joy. Hopefully she can go home tonight or tomorrow.

I hate to be a downer, so I think I haven't posted about Eryn much because everything has been so hard. The Relief Society has had to step in and help a few times because of the stress involved with so many appointments and all of the "homework" we were getting from Urology. But at this point we feel really good about this surgery and feel like it is a step toward more independence and normalcy for Eryn.

Lily Crawls!!

Lily just learned to crawl forward. We are so excited for her. She has been moving side to side, backwards and in circles for a while now, but she had not been strong enough to pull herself forward. We think that this is really going to help her to explore and enjoy her world a lot more.