Flat Tire

When Shayne called me this morning from the Ronald House he said that the girls had received some packages and should he bring them over? I responded, “Yes” and he responded he’d use Christi big blue jogging stroller to get them to us since he walked back to Ronald last night and our van’s still here in the CHOP parking garage. Shortly before arriving at CHOP, the stroller- which has been with us throughout the past four years got a flat tire. How about that for symbolism?

Dr. Maris called early to check on Christi. He had not been notified about her seizures. He told me he’d be in during the afternoon sometime- and he was. (So sweet as we were certain it was more just to bring comfort to Shayne and I so that we'd know we are not alone in terms of medical professionals that know this situation too well.) I did find comfort in knowing that a level was low which is what caused the seizure. (We did not give her the oral anti-seizure meds for two days.) He explained that there is so much going on with her brain right now: tumor, radiation, etc. When the brain gets out of function like that, that's how it reacts. He also told me she never knew it happened which gave me comfort. We have some real tough talks coming up Monday morning, but we'll continue to pray for guidance, strength and wisdom until that time.

With the biggest of decisions most likely to come on Monday morning, Shayne told me I could do whatever I was comfortable with, but to consider the fact that Christi may die during the 24 hours while I was away and was I ok with that. Additionally, if I was unavailable by cell phone would I really want him to make the big decision without my input. I decided not so I called the airlines and cancelled my flight and listed Shayla as an unaccompanied minor. (Yes, 24 hours ago I specifically told her, “Honey, I would never put you on an airplane to fly home by yourself.” Yes, all that just went out with the bathwater.) Seriously, we know she will be fine or we wouldn’t do it. We don’t feel sorry for Shayla – just the person sitting next to her (smile). I will be permitted to take her through security and to wait with her during boarding until a flight attendant comes and walks her to the plane. I must remain in the boarding area until the flight is in the air. On the other end, a pass will be given to get that special pick up person through security and down to wait for Shayla’s flight at the gate. Shayla is so independent and brave she’ll be fine. (Shayne and I have joked that Christi could never do this, but Shayla – no problem!) I actually got a little smile out of Christi today when I said, “I better have a little talk with Shayla about appropriate airplane behavior. Otherwise she may try to get into the cockpit and ask if she can try to fly the plane.”

Christi spent the entire day sleeping. She woke up about five different occasions to use the potty. Sometimes we were able to get her there in time…..sometimes not. She is really “out of it” so we must unplug her IV pole, take care of all of her tubes, hit her pain med button, unfasten all of the cushions around her bed, etc. She’s very unsteady and in pain so Shayne lifts her, even though it hurts. She did have a “witty moment” once after she was finished and Shayne picked her up. After I cleaned her with a washcloth instead of tissue we heard, “Oh, my butt doesn’t very much care for that, Mom.” (What a hoot!) Last night as I sat beside her bed reading she sweetly said, “You’re a good mom sitting beside your kid’s hospital bed. I mean, I had my doubts, but really you are a good mom,” then she giggled before drifting off. So funny!

The IV which was placed during the night fell out during one of our potty breaks. She had to get another one, but for the most part handled it pretty well. Now that she’s out of pain, she’s really “out of it”. Dr. Maris said that could be attributed to the disease, the large doses of Atavan (sp.?) she received to stop the seizures or the large loading dose of the anti-seizure medication that is now going IV. He said that the IV was fine for now, but it won’t be able to stay for many days before an alternative will have to be found.