Monday, June 25, 2012

Tough week.

So all the news is in. Where to start? How about with Fridays Shriners appointment. We had the urodynamics test done Friday and after getting peed all over and watching my poor little guy scream and scream results show a neurogenic bladder. Which basically means that his bladder does void but it also is constantly contracting. With this causes a reflux into his kidneys. If not treated he has a huge risk of kidney infection or UTI and the bladder muscles wall hardening so much his bladder would be too small to hold anything. So the only solution is to start a cath program. This consists on having to cath his 4 times a day for now to help void his bladder completely. Plus, a medicine called Ditropan which is basically a muscle relaxer for the bladder. This medicine has a side effect of constipation so he'll probably need to also start a bowel program soon. Something like miralax or enemas. From what we've been told this will never get better. It will either stay the same or get worse and odds are it will get worse. I've talked to a lot of other people with SB and some who cath and they say that at some point usually around 9 or 10 years old they can cath independently. So that's good. For some reason this is really freaking us out. We have handled everything with such strength and ease but this week we're losing it. Mainly me. Maybe because we expected everything else but thought he had weak bladder/bowel muscles so never expected this. For almost a year now I feel like I've handled everything with strength and hope This week I feel like I've lost my way. I just need to find that faith in myself that I can do this. That I became a mother to take care of these beautiful children and have faith in my skills as their mother.

Tomorrow is his shunt surgery. We go in for 6am and fingers crossed will only be there one night. I really hope it'll only be one night in the PICU. I really hate the PICU. We have loved every aspect about Baystate but honestly did not have the best experience in the PICU or NICU for that fact. It's not very comforting and there's no where to sleep. The PICU had like 4 or 6 beds and all crammed in one room. One kid coughed and screamed all night last time and baby Eddie got no sleep. I hope this time is more soothing for him.

We will start cathing him regularly later this week after things are headed back to normal.

Positive note is that we got the ok to start trying a little cereal with him. They are ok starting early to work with his EI and PT so he can get the best start possible. Plus we've seen he loves the pool! I'm thinking of asking our PT to come to the pool for our next session.

I'll check in later to let everyone know about the surgery. Thank you all for your unwavering support!


  1. Thinking about you guys. Please let us know if you ever want/need to have Bella come over for a play date to give you a mini-break. I'm sure the girls would love it!

  2. Thinking of and praying for you guys :) <3

  3. “I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain move from here to there and it will move. Nothing will be impossible for you.” (Matt 17:20)