Hard Day's Night, and Morning, Well Afternoon Also

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Another day of treatment. Carboplatin, photons and two hours of general anesthesia! This time the docs kept her warm with a Bair Hugger and brought her back out of sleep slowly, pushed as much fluid as possible during the treatment, and kept the CO2 levels low. She still had a severe headache after a few minutes. So we gave her some meds and she took it easy for a couple of hours and now seams to be much better. Take a look.

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We need to keep tweaking the daily regiment for sure but we have ideas to try again tomorrow. Let's hope we feel good a little longer and when the doc swings by around 6pm we can go home and do it all again tomorrow.

Ah, Now That Feels Sooooo Good!

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Um good, a hot shower, a girls hair washed, yea, that feels good! We had a very restful sleep last night. Almost 15 hours of pure rejuvenation. So now we are off to have the bone marrow test and the port-a-cath installed starting sometime between 11-1.

Then we will see how we feel post those two sessions and make the determination if we are going home tonight or hanging at CHOP for one more night.

Will let you all know later in the day. See ya.

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One More Day at a Time

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We are going to stay at least one more night. We just where not ready to dive into this procedure today since we weren't quite up to speed from the surgery from yesterday. The good news in this is that we where able to combine two into one so if all works out well tomorrow we should be off and away from the hospital to feel "normal" for a couple of days. Which would be amazing. Think, strong, no quit in you, thoughts for us tomorrow.

Oh What a Night

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Late December back in '63. Oh wait, that's not it but certainly Frankie Valli wasn't thinking about me and Naya hanging in 3E43 at CHOP when he penned that classic of my childhood. We where up and about for a 3:30 am stroll of the 3rd floor and our favorite bridge overlooking the ER and the UoP campus. Hung there for a little then back to bed. Our nurse was great in helping us figure out how to get that colon going after all that anesthesia. Man that stuff will play havoc on you GI tract.

We just completed another loop, here is the view on the bridge. Btw, Naya is not happy I'm showing you all her unbrushed hair.

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Today we will have one last test performed and then we are out of here and heading home.

Groundhog Day - Sort Of...

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We are hanging out in the PICU recovering from the soreness of having a plastic straw, sort of, snaked from our brain to our abdomen. The painful part of this for the next couple of days is the abdominal incision used to pull the straw from the neck down to the abdomen. Those core muscles are used for just about every movement and when they are sore, oh boy that is unpleasant. We are going to stay in the hospital tonight since the soreness/pain is a little more than we expected plus we have a bone marrow harvest procedure tomorrow at 8:30 am.

I will say that the Naya of old is emerging and popping through the pain so I'm pretty confident the shunt is doing its job. She seams much less dizzy, less nauseous, and generally less discomfort although that is masked somewhat by the abdominal and neck pain.

So here is to another night at CHOP and the wonderful Bobby Burger Palace burgers. Check it out, Bobby Flay's burger joint.

PS. Naya loves the chocolate shakes.

A New Day

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Naya awoke from surgery just fine! The surgery went well, lasted about 30 minutes and achieved its mission. Last night she was feeling a fair amount of post op pain but once we administered the pain meds she was sleeping comfortably. The expectation is that she can eat and drink what she wants, that she will be up and about this morning, obtain physical therapy sign off, and be homeward bound in the afternoon. That is the plan.

We will take it one step and goal at a time.

A Big Day Ahead

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Good morning. We start procedures today at 10:30 with radiation simulation.  We have to make a mask of her face that will look similar to a hockey goalie's mask.  The mask will be used over the next six weeks for her treatments to keep her completely still and ensure the accuracy of the treatment.  It's a long haul, 1.5 hours on her belly.

The next procedure is a spinal MRI which is 2+ hours on her back.  Can you say boring?  Neither of these procedures are painful, they are, however, long and tedious.

One other procedure is on tap for today also and it will be painful but she will be sedated.  Hopefully when she comes out she is not feeling sore or uncomfortable. So a big day to say the least.  It may sound like too much but we are working to accomplish all the preparation activities we need to get into the treatment phase as soon as possible so we can cure this thing.

Oh yea, one other bummer, no food until all this is over because of the sedation.  I better have chocolate chip cookies, pasta, and fruit all at the ready.

Friday Night@CHOP

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Naya is hanging tough! She had to spend the night back at the hospital in order for the doctors to monitor her incision and determine the best course of action. It doesn't look like she leaked any more csf since Thursday night which is great. But, she did have a bad headache last night which could have been from higher inter-cranial pressure due to increased csf, or could have been that she isn't quite ready to be off all the pain medications. We gave her some pain meds and she rested well. Btw, her CT yesterday was normal and showed flat ventricles which is what you want to see on a cat scan.

The neurosurgeons will make their rounds this morning and determine if she should have a shunt installed in her brain to help with the csf drainage or if the EVD procedure they did 10 days ago will perform the job.

If we have to install a shunt she will be in the hospital until tomorrow. If we don't, we will be home today. Quite honestly, it's too close for me to call at this point so I'm in the same position as you. We'll just have to wait it out.

Look for an update mid-day.

Hangin at CHOP - Again

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Naya's CT was completely normal and looked great, so good news. The neurosurgeon admitted her for observation to make sure she has stopped leaking csf, cerebral spinal fluid. The thinking right now is that if there is no leaking through tomorrow they will release her. If she does have subsequent leaking they will insert a shunt tomorrow and hopefully then she would come back home on Sunday.

We are hanging in there with her and taking it day-by-day.

Can It Be True

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We just heard from the neuro-oncology doctors and they are trying to get us out of the hospital today.  We need physical therapy to come by and to certify her on her ability to walk the stairs. There are one or two other items but we might make it home today! Keep your fingers crossed.

Good Morning 5-27-2013

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Good morning from chop. We are looking forward to getting off these steroids so we can return to the more mellow Naya. Right now she is a super fast talker and ready to take charge. She is on fire!

Yesterday, she went to the cardiologist for an echo cardiogram. Next up was a visit to the audiologist for a hearing test which proved her hearing is perfect and she is just ignoring her mother and me.

Of course the usual routine of physical therapy, occupational therapy, rehabilitation therapy, and the slew of neurologists, oncologists, social workers, etc all checked in and kept us hopping.

We walked all over the hospital yesterday and even had a secret meeting with a friend. Until March 1st visitors are not allowed in the patient floors and rooms due to the high incident rate of the flu and RSV virus so we coordinated schedules with a friend to clandestinely meet in the atrium. It was all very cloak and dagger.

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