Monday, January 21, 2013

Discharge day!!!

Praying today is the day they let fin go home. She is so excited but it may not be till later today but if she is in her own bed tonight- life will be perfect!!! We are done with the hospital. Seriously??? You are supposed to heal and sleep in that noisy place? Almost impossible. Our roommate left yesterday evening so the bed next to us was empty all night and fin is not on any prescriptions so they hardly came in at all and we slept so much better!!! At least we slept well the last night-lol!!!

Neuro came by and is getting a urology consult and they should come by this morning sometime. We still have no bowel and bladder function so we will be going home catheterizing her and putting her on a bowel regimine. She does not seem to have any feeling down there and while the neuro said that is normal after her type of surgery, he also said function and feeling may never come back and that it may as well. He said it could take months. We are specifically praying for her full feeling and function for her bowel and bladder to return. She has been a continent little girl her whole life so having to be cathed and have a regimine to move her bowels is a very uncomfortable place for her. She is a trooper and taking it in stride but its been hard. It's been hard for me to process the lack of feeling and function. I thjnk I went into this surgery not thinking this might be the end result. Didnt even think she would
Lose her bowel/ bladder function. I thought we caught it early enough before surgery but when you have that invasive a surgery where you are dealing with nerves,
Lots can happen. I'm trying to be strong for fin and not make her any more uncomfy than she already is but this has been a lot to process both intellectually as well as emotionally. Yesterday was a hit the wall day where I was literally hanging on by a thread and the second I went home to shower I just lost it. The loss I feel for fin losing these basic life functions is overwhelming. I grieve for this and while she still has a great chance of function returning, I'm just not going to cling to that and them be heartbroken when it doesn't. I think we will need to treat it as if its gone for good and then be surprised when it returns. I'm feeling better this morning and my emotional state is much better.

It looks like today is our discharge day. We are not sure When but should be sometime today. I'm so thankful as my Tuesday and Wednesday at work is psychotically busy so it will be nice to be able to not have to find replacements for all my meetings. Fin is sooooooo excited to go home. Literally giddy! She is such a homebody that this has not been easy on her and she has been a trooper through the crazy ER time to the two sedated MRI 's through the 8.5 hour surgery and three days of laying flat in bed without her head even being elevated to being poked and prodded for numerous blood draws and iv lines and being cathed many times a day. She has taken it in stride and has been such a trooper. I'm so impressed by her.

The neuro that did the surgery just came in and he's hooking her up for everything including physical therapy so they are supposed to come in and consult today as well. You can see the genuine distress by our dr. He said electrophysiologically she is in tact so this is why he can't understand her level of loss. He was just scratching his head and genuinely concerned. He says he really doesn't know if it will return. He says its within the realm of possibility. To see his disappointment and having him apologize just broke my heart. He is such a gentle wonderful man and I told him that either way she was losing function and we HAD to do surgery one way or the other. I told him that if it comes back that is what we pray for and that is great but if this is what God has for her then we will take it in stride and deal with it. God made finley into a strong little girl and he did that for a reason. If this is her challenge then we will take it and run with it. God is good all the time and there is a reason for all of this.

They are having 2 urology tests done before discharge- one ultrasound and one invasive one- ugg! This will give the urologist info on her functioning before they see her Wednesday. They will also have physical therapy consult and they are ordering her 6 weeks of PT as well as 6 weeks of home hospital school.

So that is it for now. Please continue to pray for return of function. Pray for finleys emotions and ours as well. I'll update you soon!!

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  1. I will so be praying for you all. I know those emotions as I faced them last summer with Janie. We have had a great outcome so far with urine but do daily enemas for bowel. I was so very overwhelmed when we first started but now it is second nature. Please know I understand and feel free to call me 901-483-7331

  2. We are with you. Joyce and David

  3. Praying for you and sweet Finley! I can only imagine what you're going through. Our Benjamin, as you may recall, has the exact same SN as Finley. Post op lipoma removal in Beijing...SB.

    His cord is also very tethered. He is 4 1/2. Absolutely no signs of any SB.

    We head to the SB clinic on 2/5. Never take a second for granted.

    I have been following and praying for your sweet Finley. She's a tough lil gal!!! Thanks for sharing and continued prayers, Christy!