One thing I've learned about myself is I often break the promises I make to my blog. I never re-did or expounded on the last two posts while we were at the hospital with Sarah. We got to come home, and then life happened, and I just can't seem to find the time to do the things I want to do, like follow through. I guess that's what moments like this are for... putting everything else on hold, ignoring everything else that needs/wants your attention, and spending a few minutes listening to Jon Schmit play beautiful music in your speakers while you reflect, and catch up on your "me" time a bit. :)
On October 27th, I posted a short post about the basics of what happened that day. "We met Dr. Lynn Gershan, the medical director of Pediatric Integrative Services, and Dr. Rafael Firszt, the immunologist."
Dr. Gershan is basically PCMC's doctor of alternative medicine. She came in and talked with Sarah to assess her needs, and then spent some time the next two days doing treatments and helping her learn some new coping mechanisms. She explained that sometimes kids (especially those with critical and long-term illnesses) don't necessarily need more medicine or surgery. Sometimes their minds and bodies can help heal themselves by simply teaching them what to do and providing them with the right tools. She did a Japanese pediatric acupuncture (Shoni-shin) to activate some of her body's natural healing powers. She taught about aromatherapy (and made her a little inhaler with mint and lemon) to help calm her during hard times. She taught her self-hypnosis so she could better deal with her stress and anxiety. She was going to teach her some breathing techniques, but we got to go home before she had a chance. She also taught Sarah about "reframing". I love the idea that her mind can create more positive images to help her body heal. (For example, when the doctors talk about her "leaky gut", often the picture that comes to mind is of the cell walls with holes or her intestines seeping fluids. Dr. Gershan taught her to picture the cells closing up tighter and holding in that fluid, and allowing the body to absorb the important proteins that she "used to" lose.) I believe the mind has great powers, and though some think it's hokey, or kind of like living in denial, I like to think it's re-training the mind to think positively and allowing the body to follow the mind's example. We have much more power and capacity than we ever use in these minds and bodies of ours, and learning how to access that inner power is pretty cool.
Dr. Firszt came and visited with us about Sarah's immune system. Even though most of her tests came back normal, they are concerned that her body may not have the created the immunities that healthy people create after immunizations are introduced into the body. He wanted to do a full screening on her, but because she had received some IVIG (a donated blood product on immunoglobulins) to boost her immune system, the immunities that showed up could be someone else's. Gammaglobulins (B-Cells and T-Cells) are what fight infection, and Sarah's are extremely low. He said not to panic, though. Those cells are created in the lymph system and carried through the thoracic duct and kids with heart surgery history often have a damaged or compromised thoracic duct. Because she's been so "healthy" all of her life, maybe her low numbers have worked just fine for her all this time, and will continue to do so. Their concern, however, is that this mysterious "infection" she had might have been because the small amount of cells she has are no longer working for her at this age and stage of the game. So, he ordered a triple round of strep-pneumonia shots and put her on a daily antibiotic to fight off the environmental bacterias that are so easy to get this time of year, including the strep/pneumonia bacteria that may have caused the SBP (spontaneous bacterial peritonitis) they treated her for. We go see him again in February or March to have the full screening done and see if her immune system is strong enough to fight on her own, or if she will be needing more treatments and immunizations to keep her healthy in the coming years.
So, it was an interesting and enlightening couple of days, but I wished Steve had been there with me to learn and hear it all, too. That's one of the many hard things about being separated during these hospital stays. There's so much to take in, so much to learn, and so very much to... well, forget. Plus, he's a fan of "mind power" and I think he would have loved Dr. Gershan.
On Friday, Steve was planning to return to stay with Sarah, and I was going to go back home. But, in the morning the doctors surprised us and asked if we were comfortable going home soon. After the last two disappointments, we had decided to not even think about home and then we'd just be happy and grateful when they decided they were ready to let us go. So when I say "surprised", I kind of mean "shocked", and didn't even want to go there if they weren't serious. Sarah had a fever the night before and had been throwing up again that morning, so I was holding my breath until we got the final word. The doctors had all decided that there wasn't anything else to test her for right then, and although things weren't all the way better, they were comfortable that she had improved enough and we could do the same things for her at home that they were doing at the hospital. We also left with the understanding that we'd be back if anything got worse. So, we got to go home. And here we are, two weeks later... and we're still home! So great to be back together as a whole family, getting back into the swing of things and feeling a little more normal again.
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