Good day

The upswing continues! Julia's appetite is back with a vengenance...for breakfast she had TWO yogurts, a small box of Cheerios and half a cup of milk. I was afraid it would come back up but nope, she held it all down. She's also...ahem...pooping. (Sorry for the TMI, but when you're in the hospital that's a big deal!) So that's a hurdle that's been crossed.

The only thing holding us up now...the darn fever! Still no cause for it, every test has been run that is possible so it either boils down to a drug fever caused by something she's on, or a bug that she's picked up during her stay. The Dilantin has been cancelled effective this afternoon, and fever is a potential side effect of that, so we'll soon see if that was the culprit.

Everyone is talking about Friday to release us so hopefully her fever is long gone by then.

Turning a corner?

Dare I hope? Have we turned a corner? Yesterday Julia slept all day...literally. From about 9am to 7pm she did not wake up. Most of that was due to the Ativan she got earlier to stop the shivering, and some sedation she received to get her PICC line put back in. But that was by far the longest stretch of sleep she's had since we've been here. From the time she woke up until now we haven't seen any weird episodes, minimial irritability, her fever has been kept in a low range (no higher than 100 degrees), and she's been herself for the most part. We've been able to get her to eat and drink, even though the amounts are still small. She slept on and off overnight and is sleeping now.

They are doing a urine culture to see if the fever could be caused by a UTI. All of her bloodwork and cultures continue to be normal. We also got reassuring news that the staph variety from the original culture is Staph. epidermidis which is treatable with Vancomycin so even if the infection were real (and everything indicates it's not) it's manageable. The other possibility is this is a reaction to the Vancomycin, or related to the thrush.

We wish we could either get her over this fever or get to the bottom of it quickly because this will be the only thing to keep us here. Otherwise she's ready to be released to Cincinnati Children's for rehab. We are still not clear on if we can do outpatient instead of inpatient, we need to learn more about what insurance will cover, differences in services, etc., but being back home will make such a difference for us.

Daniel's first birthday is on Saturday and although Julia's health is the priority I will be pretty disappointed if I miss it. I miss him so much and want to be home again badly. Fingers crossed that it will be soon.

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.

Silver lining

She finally ate...a container of ice cream. She gobbled it down like...a person who hasn't eaten in 10 days. Go figure! Definitely helped improve my mood some.

Venting

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.)

Daily update

Little tidbits since yesterday:

• Dr. Sood came by this morning and said she looks great. All of the staph cultures have been negative except of course the one from surgery so good news there too. Medically there's not much more of a reason to keep her here so after PT assesses her on Monday and we get the home health care set up for her antibiotics, we should be good to go! I'm hanging my hat on Tuesday.
• We've been getting her to sit up in bed for short periods of time and she's already gained quite a bit of strength back. She can keep her head upright now. Her right side is getting stronger and stronger, she's now moving her fingers too.
• This morning she told me "lay down" after she'd been sitting up for awhile. She also has been asking for massages...can't think of how to phonetically spell the way she says it but those who know her can picture it. She has always loved for people to lightly run their fingers over her back, arms and legs and we call them massages. She has been asking for them all morning and I'm happy to oblige!
• Later this morning we're going to get her up and out of this room. They're going to get us a wagon and pad it with pillows and we're going to wheel her around the halls. I think it will do her some good, she definitely has some depression from being in this bed and room for so long.
• She still has not had anything to eat since we've been here...10 days now. She's had things to drink but no food. Yesterday she asked for a cracker but then wouldn't eat it. I think the Vancomycin is messing with her stomach. She needs to eat and poop before we can leave so hopefully we can tempt her with something.

That's it for now! Fingers crossed for a good day and some good progress!

She's back!

Everyone said to expect something to happen today, and to be honest there was a part of me that was scared somehow we'd be the exception. She got her EVD drain out a few hours ago and immediately afterward a nurse helped me wash her hair and give her a sponge bath. At that point she seemed so much more comfortable and content...still a bit grumpy but much less so than before. Then...the words started coming...some I hadn't heard in days, others I hadn't heard since before surgery..."mommy, "want a cracker", "no", "puppy"...and that's just in ten minutes! I think Michael and I were about to cry with happiness, because we've missed her so much. Even though she's been physically with us it's like we haven't seen her since early Tuesday.

Just had to share the news!