Hi everyone. I wanted to touch bases with everyone as I know there are so many of you out there praying for our Finley.
We have been home from the hospital 11 days now. It's been a crazy ride but we are settling in. We had a birthday party last weekend and Finley had a blast. She had been looking forward to this Disneyland party for weeks and I could not bring myself to not let her go. I knew the pee and poo were going to be our issues-- and they were-- but it was such a wonderful time with Ava and Laila that I could not keep her home. She managed well and had an amazing time. Im adding a few pics of our time.
We are continuing to pray that Finley's bowel and bladder function will return. We still have no function at all. We have to catheterize her every 5 hours and we are on a bowel management program that is tricky. The catheterizing is pretty easy but something you have to think ahead about and that is not my strong suit. We had to go to the Dr. for a urine specimen and we got almost all the way there and I realized I forgot her Cath bag that has all her goodies for cathing and called the Dr. to see if they had any catheters there - NOPE-- so I had to go all the way home to grab catheters--Ugg! I just am not good about remembering all that--shoot I cant even remember diapers for Emery so this has been a challenge. Im sure I will get use to it but its been a challenge. The poo thing is another thing all together.
---- This is TMI so if you dont want to read about poo-- skip this--
At this point there is no bowel function. The key to a bowel regimen is to get the poo to a certain consistency and train the brain to signal having a bowel movement at the same time every day-- right after dinner. The trick is to have the stool travel down and be ready to void at the same predictable time each day and it to come out formed so it is not too loose and causes cross contamination with the urine-- catheterizing. The problem is in the early stages of the bowel regimen it is hard to know how to get the stool to that consistency. Incontinent kids tend towards constipation so they often need stool softeners to help keep it soft. Furthermore they often need a laxative to get the bowels to push out what is ready to come out. Finley eats a super high fiber diet with tons of fruit and vegys. We were also giving her miralax to keep the poo soft but I think we were overdoing it and this early on it is tricky and you have to kind of experiment to get it right. At first when she was discharged it was just coming out at will all day. It was horrible and since Fin has some feeling down there (which is an awesome sign that function might someday return) she was very uncomfy with anything in her diaper. We then got it to a good consistency and then started up on the miralax and it got too loose again last weekend and we had some major accidents at Disneyland. We have discontinued the miralax thinking she is getting enough fiber in her diet and now things have firmed up and she is back in panties and no diaper-- yaaa!! If we can maintain the consistency then we should have no leaks in between her nightly bowel movement and she should easily be able to wear undies. She does not leak any urine (which is another good sign of possible return of function) so panties are manageable. Out of all the things that Finley has to deal with, she hates the bowel part the most. She hates sitting on the toilet and hates pushing (which she can push which is another great sign of return function). We give her a glycerin suppository before sitting her down and that seems to get things moving pretty well. So, as you can tell, the bowel regimen is tricky and while it is super easy once things have settled, it takes time to get it perfected-- if it ever can be perfect :)
We have had a few hickups this week that are side effects of the catheterizing. With incontinent kids, you are having to push a catheter in many times a day--- hence pushing bacteria in as well. When a kid in a diaper has poo all over, they then pee and it clears the ureter and any contamination is pushed out. With a cathed kid, we can clean the area as much as possible, but we are then pushing in and bacteria ends up inside the bladder. Consequently, kids that cath OFTEN urinary tract infections. Many of these kids are put on a daily dose of antibiotics to keep the infection away. Unfortunately, after only 13 days of cathings, Finley has her first UTI. She had a fever and was not feeling well and we could tell her urine had all the symptoms of a UTI. She has been on antibiotics for 2 days now and she is now better but I worry about having to fight this all the time.
-----OK, TMI is done -------
So that is what is up with all the bowel and bladder stuff. We are still praying for Finley to be healed and the function to return. There are tons of kids who live with incontinence their whole lives and it is no big deal and they are as normal as can be-- you would never know they are incontinent and if that is what Finley's future is we are totally fine and prepared for it. The hard part of this is that Finley has been a continent kid up until surgery. She took care of her own needs and did it well. To now be 100% dependent on us to cath and deal with her bowels is really hard. I mourn her loss-- I really do. It breaks my heart that this happened but I also know God is HUGE and has a plan and if that plan is to return function then it will happen and if it is for Finley to be incontinent her whole life then that is what we deal with. God knows and has it under control. We have faith in that!!!
Finley is off school for 6-8 weeks. We have enrolled her in home hospital through the school district and they send a teacher to our house 5 days a week for an hour each time. It is great!!! Her teacher is a first grade teacher who is awesome. She is working one on one with Fin and really pushing her to improve her skills. Fin loves working with her and we are so very pleased this is available to us.
Fin had a physical therapy eval this week and they honestly said there is not much to work on besides working on strength in the one leg. Her limp is gone and she is really back to normal in her motor function. I think she is a little hesitant to jump off things but overall, she can run and jump like normal. We are not letting her do those things yet but she can do them so we are not going to do physical therapy at this point-- she just doesn't need it.
We go to the spina bifida clinic next Wednesday and we will be able to get a lot of help with all this stuff. Im anxious to hear what they think about return of function as well as more help with the bowel and bladder stuff. The RN at the SB clinic has been awesome and has guided me through a lot of this. I have also had lots of wonderful woman on my Facebook Spina Bifida support group that have given me lots of tips and essentially took me through this whole bowel thing. Honestly, without these woman, I have no idea what I would have done. We were discharged with little to no guidance on the bowel thing and if I didnt have these woman Finley would probably be in diapers with no regimen at all. These woman have been invaluable!!!!! Thanks ladies-- you are the best!!!
The other kids are doing well. We are all managing through this and it has taken us all to gather together and support each other. The kids have been great and our family support is always invaluable. Thank you all for your prayer. We cant tell you how much it has meant to us in this tough time. This is a lot for all of us and has taken a lot of adjustments in our lives and in Finley's too. We continue to appreciate your prayers specifically for Finley's bowel and bladder function to return!
Mommy and Finley
All the girls at the party on the tea cup. What a fun party Laila threw-- the girls wanted for nothing-- what a special time for all the girls and specifically for Ava-- front right- she had a wonderful bday!
Tea Cups-- love the look on Emery's face
Laila booked a character breakfast which the girls loved!!!! They got to see a ton of their favorite characters and get their autographs!
Gotta love tinkerbell
And Auntie Laura got all the girls face painting.
Finley sorting the little people for her teacher