Monday, September 28, 2009


This is going to be a downer post, so be forewarned.

Julia is doing well, but her recovery isn't going as smoothly as we would have hoped and it's really got us down. We are tired, emotional, sick of being in the hospital, and none of that is helping with our coping skills. We hoped and perhaps naively thought that she'd have her surgery, recover for 3-4 days, and be good as new. Unfortunately it's not happening like that. And the bumps in the road are most likely that, just bumps, but there's been so many that they're starting to feel more like pot holes.

First there was the staph scare, which necessitates a 6 week course of IV antibiotics. For a child who cannot STAND to have anything in her arm, that request feels like 6 months to us. Last night as she tossed and turned she pulled out her PICC line. It wasn't a mess and didn't seem to hurt her but it was extremely disheartening. Now she has to have another one put in, in a short procedure that requires sedation. Ugh. They can't do it until tomorrow, so that just adds more time to our stay.

Then there's the physical issues...and they are not minor. She has substantial weakness on her right side and while the strength is improving daily it's not anywhere close to where it was when we walked into the hospital. Her left side is also very uncoordinated. The PT department here looked at her today and said they would recommend to keep her in the inpatient rehab program for two weeks. Two weeks, you read that right. We are working with them to get her transfered to Cincinnati Children's since there is no reason for us to be so far from home for something like that, but it's disheartening to learn that we've got more time before things will go back to normal. And then there's a part of us that wonders, will they ever go back to normal?

She's also so frightened and sad. She lashes out when anyone tries to tend to her, even if it's me trying to change a pull up. She is sick of the hospital, sick of nurses and doctors. We realized today that she has thrush and that's most likely why she hasn't been eating or drinking. We've started some medication to clear it up but it's just one more hiccup, one more complication, however minor, keeping us from getting back to normal.

I have censored a lot of my fears and sadness over this process from the blog because I don't want people to worry but right now it's hard to do. None of the doctors are worried and say that her moodiness and irritability are age appropriate. I thought of this surgery as the answer to our prayers, I looked forward to the outcome and seeing her progress. And logically I still realize that we are in the healing stage and to give her time. More and more we are just sad...yes, the seizures are gone. I am grateful for that. But I also want my girl back.

(I can't be a total downer...she did sing "Wheels on the bus" with me just now.)


Twinkies2x said...

The road to recovery is such a trying time. We are still praying for you! You are allowed to be frustrated and sad and tired and everything else! kp

Helen said...

Lisa - It is certainly ok to be human. This is so much to ask of any parent. The stress level is at the ultimate high when dealing with your own child and medical issues. It is only normal to be scared and fearful but hang on to the hope. Julia will heal - it may take longer than the original plan but she is a strong and determined little girl. She will amaze you. Venting is good - it takes too much energy to keep those walls up around us. Praying that you all get to go home quickly, that you can find assurance that Julia will fully recover and amaze us all, and for the energy you need to focus and cope with all that this surgery has to offer. We love you all.

baby trevor's mommy said...

Lisa...thank you for sharing honestly. While it definately worries also helps me to be realistic. And that's important!

Do you think there's any way to do Julia's rehab on an out-patient basis? I don't understand the need to be in the hospital for a couple hours of therapy a day? And like you...we are SO not hospital people!

Hang in there, hon. I'm sorry that it's been a rough go. Hopefully that just means the beginning is the rough part...everything else smooth sailing!



Anonymous said...


Sophie's Story by Elaine said...

I started writing a comment but when I realized it was longer than your post, I decided to e-mail you instead.

Allison said...

We're thinking of you all everyday Lisa. I know that this is hard, harder than anything one should ever have to go through. You have such valid emotions. I can't imagine how this feels for you and Michael. The love you have for your child is indescribable and the feelings your feeling now, are just that indescribable. Stay strong! We love you guys.

blogzilly said...

I laughed out loud at Elaine's comment, and I hope her e-mail has given you some comfort.

It's a bumpy ride, no matter who you are or where you have this surgery or what type of surgery that you have. It's up it's down it's all around.

I've never experienced anything like it, and hope never to again. But take some comfort in ANYTHING that anyone who has been through this can answer, ask lots of questions, and by all means...VENT EVEN IF IT IS BAD NEWS.

That's something I consider critical. Let out your pain, or the pain can consume.

My best wishes to you and Julia and everybody else out there going through this.