Tuesday, September 29, 2009

Tuesday update

First, a recap of the past 24 hours:
  • Julia began running fever early Monday morning and we've been treating it with Tylenol. No one is concerned at all, her blood work, cultures, and incisions are all normal so it's not related to infection. Fever can happen after major surgery or it could be a response to the antibiotic. I still don't like it but I realize it's not anything to worry about.
  • Last night she began having some major muscle twitching and spasming. Again, no one thinks it's seizure related. Dr. Chugani this morning thinks it's a reaction to medication and he's stopping her Dilantin effective immediately since we've started her on Trileptal.
  • Last night we were also able to get her to eat more, she had a few bites of green beans, mac and cheese, french fries and yogurt. It's a great start!
  • She is also seeming much more herself, her language is improving steadily, which is the biggest boost of all to my improved mood.

Dr. Chugani wants to get us home within a few days, he feels she will recover best at home and we couldn't agree more. He reminded us today that she had major surgery...the recovery takes time and he said he's seen all kinds of behavior that can't be explained but is all temporary.

Thank you for the wonderful comments and emails after yesterday's post. It felt good to get those feelings out and it felt great to hear all the love and support from everyone.

11 comments:

Ang. said...

I hope you guys get to leave soon. Julia will do great at home. And with her Nana there cooking, she'll be back to her old eating ways in no time! You are one resilient family. Stay strong.

JSmith5780 said...

Great news. Glad Dr C is onboard wiht her getting home so she can get better!

baby trevor's mommy said...

Don't you LOVE the room service menu! And that you can call food in at any time! Such a gift when you have a little one recovering from MAJOR surgery!

I hope hope hope you guys get to go home soon! And it's heartening to hear that Dr. Chugani feels recovery is best at home too!

(((((((hugs)))))))

...danielle

Bill said...

Lisa and Michael -

Just a short note of encouragement from Uncle Bill. I am very proud of your courage and your willingness to communicate both your fears and your victories to us - your family and friends. In looking over the messages that others have left, it is clear to me that you and your children are much loved. The surgery and the healing that will follow is a process and there will be both good days and difficult days - the constant in this process will be the supporting love of others for you. And your love for your children - and for each other.

Helen said...

Always a good sign when a child eats! I am grateful Dr Chugani could give you some reassurance. Give Julia our love. Praying for a day of progress.

aylwardsinead said...

(Warning - novel ahead)

Oh the stress! Sorry to hear about the fever. I think we were home about a week when a fever of 107 sent us rushing back there. We consulted with surgery, general pediatrics, infectious diseases and had more stress than even the surgery (and some of the meanest selfishest nurses ever!!!). We were delighted to see her sporting a runny nose three days in, cause it meant we could go home and take care of the common cold there. Hospitals are for procedures and monitoring. Home is for healing. You will all feel so much better when you get home.

After surgery I just hated the people who were in and out in three days with their perfect children who went home reciting Shakespeare. The reality on the ground is that recovery is so much better than it should be given the trauma involved but it is slow and steady and lacking in glitz, glamour and magic.

PT will help. Home cooking, comforts and love will help more than you can imagine. I will tell you that it might get worse before it gets better. But slowly, I hope you will see some positive changes that Julia is building on daily.

Sometimes I think we had it hard and sometimes I look around and see that we actually had it easy. What I am sure of is that things are getting slowly better. I had to adjust my expectations a little and that helped. On a positive note, my little chew monster survived a music class last night without putting one thing in her mouth. She explored everything in the room with her fingers. Life is good.

Gary said...

mac and cheese - french fries.. now there is a diet i can appreciate. Don't forget the ice cream. Give the little rugrat a hug for me. Glad to hear it is still moving along fine. Always in my thoughts.

blogzilly said...

I don't know what's more amazing, the fact that Julia is doing so well or the fact that Sinead typed out that entire novel on an iPhone!

Glad things are going well and hope you guys are all headed home soon.

rkortz said...

I'm so sorry that things aren't going as smoothly as you had hoped. Reading your posts reminds me so much of our struggles with Liam while he was in the NICU. Being so far from home,possibly for 4 months,all the small surgeries,blood work, some victories but mostly challenges. It's so hard for us as parents to watch our kids struggle like that. I'm so glad that you will be getting Julia back home very soon. I can just imagine how happy she will be to get home, it will be great for all of you. I remember being in the hospital for one whole month when I was 6 years old. When I finally got to go home I played so hard I broke seven sutures from my open heart surgery. It didn't really hurt anything but I remember how mad my Mom was at me :). Take care Lisa. Your strong you will get through this :).

Laura said...

I'm so glad to hear she's eating. Stroud spawn can't be too despondent if they have their appetite. Love you soooo much. Hang in there, sissy. Love you.

Jackson's Blog said...

I am so happy Julia is starting to improve and become more of herself. It just takes time and every child's healing is different.

When Jack had surgery, we went to Detroit thinking we would be coming home within the 2 weeks...and we ended up staying a total of 4 weeks in the hospital because Dr. C. wanted Jackson in inpatient rehab. It was hard to adjust especially since I had not prepared to stay that long in the hospital with him away from home. I do think it did him "some" good, but the real healing and progress came at home. So I am glad you will be heading back in a few days!

Julia continues to be in our thoughts and prayers!