The good news continues

Now that we've been home for several days, life feels like it's starting to get back to normal. If we didn't have to do these IV antibiotics every 6 hours it would feel even more normal but even that is not a huge deal and will only last four more weeks at most.

Julia just amazes us on a daily basis...cognitively and verbally she's where she was before surgery, and we're already seeing her do new things just two weeks out from surgery. For instance, she loves to watch Signing Time videos that teach sign language. Before surgery she'd just watch the videos and although she knew several signs wouldn't sign along with the TV. Now she copies every sign and sings along with the music.

Last night we put her to bed and I left the door cracked open. Before surgery we would lock her door from the outside since her room is right at the top of the stairs and we didn't want her getting out in the middle of the night and potentially hurting herself. Post-surgery, I thought that since she wasn't walking without help I didn't have to worry about anything. That was until she got out of bed, walked downstairs and into the living room BY HERSELF. We were all in a panic at the thought of how she could have hurt herself if she'd fallen down the stairs, etc. But putting aside the panic, I was so proud that she actually did it! She's also asking to use the potty so it seems that our potty training success pre-surgery hasn't been wiped out.

This morning I realized she hadn't felt warm in awhile and took her temp, and it was 98.3. First normal temp in over a week, AND she hadn't had Tylenol or Motrin in 16 hours. Woohoo! One more item to cross off my worry list, because even if it's a tiny little thing in relative terms, I can worry more than anyone!

In other news, Daniel is getting over a nasty stomach bug that seems to have been a 24 hour thing because it's winding down. It was not fun for anyone while it lasted. He also had his 12 month checkup on Monday and is doing great.

Daniel's 1st birthday

Yesterday was a big day for many reasons, not the least of which was Daniel's birthday! It's amazing to think my little baby is now a one year old. Time is flying by the second time around.

This is Daniel pretty much all the time...smiley, happy, an utter joy to be around.

Julia enjoyed the fesitivities as well...I think she ate about 3 cupcakes yesterday! We just couldn't say no on her first day home.

Daniel enjoyed his birthday cake, and it wasn't the free for all that I expected. He would swipe one finger in the frosting, put it in his mouth...swipe the frosting, finger in the mouth. The picture below was about the extent of the mess, although there was a nice glob of frosting in his hair when it was all said and done.

The big present from us was this little fire truck. He also got presents from other family members and has been having a blast with his new toys.

Here is our girl getting her meds through her PICC line. It's going very smoothly so far, although getting up at 1am was not a lot of fun last night. She slept right through it though! Can you tell by that smile she's happy to be home? The past 24 hours have been pure bliss. Every day she continues to get stronger and stronger. Yesterday she was able to walk with very little help. She is also using her right hand to eat and play with toys. Life is good.

We're home

Just a quick note to say we made it home a few hours ago. There was no better feeling than walking in the door. Julia is so happy to be here and she and Daniel have already been having fun together. Thank you for all of the prayers and good thoughts during our hospital stay. As well as Julia is doing, the healing process has just begun. Please keep all of those good vibes coming our way.

And last but definitely not least...happy birthday to my sweet boy Daniel.

We're going home!

What a freaking rollercoaster. So after we got the news that Dr. Sood had changed his mind and resigned ourselves to staying for the weekend or even beyond, our luck changed. The PA from neurosurgery came back and said Dr. Sood decided to let us go after all. He would have liked Julia to be free from fever for a day but realized that this could go on for awhile. We could have left today but by the time we got the news it was close to 3pm and we couldn't get home in time to set up a meeting with the home health nurse to get her at-home Vancomycin started. So the discharge order is in the system to be effective at 5am tomorrow. She'll get her 6am dose which takes an hour to administer and then we hit the road. We'll be home in time to meet the nurse at our house at noon and in time for Daniel's birthday! Woohoo!

Julia had another good day and worked really hard during PT and speech. The physical therapist thinks she'll be back in shape in no time. She still can not stand on her own or walk but is gaining more strength by the day. We also went for a walk around the hospital while Julia rode in a wagon. She was wearing the hat that Elaine and Sophie sent her last week (along with a cute purse)...she loves it! And her hair didn't look TOO crazy, which was a nice benefit.

We are so relieved to be leaving tomorrow...let's just hope nothing happens to jinx things. And I get to be home for my baby's first birthday which is just the icing on the cake.

Such a tease

This morning Dr. Sood came in and said we could be released today...we were overjoyed. She still ran a temperature overnight but it wasn't terribly high and I figured they were okay with it since her other tests have been good. We had the home health care nurse set up to come tonight, the papers for discharge were being prepared, prescriptions for outpatient rehab were being sent to Cincinnati Children's, I was back at the International House packing up our stuff, and as I headed back to the room I got the text from Michael...he was keeping her another night. Apparently he hadn't seen the last temp and so decided he wasn't going to release her.

To say we are dejected is an understatement. I was absolutely giddy at the thought of going home, now we are so deflated. We have a question into Dr. Sood right now about what it's going to take for her to go home...because we cannot stay here indefinitely. Especially after hearing of other cases where these fevers lasted for quite awhile post-op. When we get an answer I'll update.

Blergh

That's really the only word for this...blergh. We are going to be here for the weekend and maybe even longer than that. There's just no getting around it. She's still running fever and they're not going to let us go until that stops. Her CRP that was tested today went down substantially which is good...it shows that there's less inflamation in the brain which would indicate no infection. We like that. But why the fever? I got on a Yahoo message board for hemispherectomies and read of at least five kids that ran unexplained fever for 1-2 months after surgery...surely we won't be here that long?! The girl from neurosurgery who gave us the CRP results said no, that wouldn't happen, but what is it going to take for us to be released?

Feeling very frustrated right now.

ETA: Just had lots of fun and laughs with our sweet girl. I managed to get a good picture of her smiling. What on Earth are we going to do with that hair? This picture doesn't even do it justice!

Another day...

We're still in a holding pattern, unfortunately. Urine culture was negative, chest x-ray negative. Still no reason for the fever she continues to run. The Dilantin was discontinued so that doesn't seem to be the reason (although she's much more alert, so I'm glad she's off it.) Dr. Sood said they're going to check her CRP (C-reactive protein) and if that's coming down it indicates the antibiotic is the cause. They aren't going to release her until they know more or it goes away though. I thought perhaps they might but I understand why they won't.

However! She is doing great other than that. Eating like a champ and this morning we even got some smiles and giggles out of her. Her strength is slowly coming back, she can sit up very well and keep her head up nicely. PT worked with her today on standing and it wiped her out but she did well.

I also got to speak to Cincinnati Children's and they strongly recommend she do inpatient rehab. She'll get PT, OT and speech twice a day plus therapeutic play time. If we were to do outpatient she'd be lucky to get each of those twice a WEEK. Can't argue with that. I think she'll respond quickly, we've already seen quite a bit of recovery without much therapy so maybe we can get by with a week of inpatient and then switch to outpatient.

Continuing to hope the fever disappears soon...