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Tuesday, April 19, 2011

We've come a LOOOOONG way

Today while the girls and I were at Raya's OT appointment, I was flipping back through the little notebook that I write down all of Raya's feeds, meds, vomits, etc. (it's actually Raya Vol. III) I flipped to the first page in Vol. III, which was from October 24, 2010. Even though I know what's in the book and what was going on in the pages I was reading today, it just took me back to what life was like 6 months ago. I relived all of the highs & lows of the hospital roller coaster that we were on for the last half of October. I was happy, sad, relieved, angry, frustrated, claustrophobic, imprisoned, bored, lonely, and felt like I was somewhat on vacation but staying at a really bad hotel. I loved the alone time with Raya but missed the rest of the family.
Aside from remembering what it feels like to wonder if you're ever going home from the hospital, I was also reminded how high maintenance Raya was at that point in time. Her GI tract was SO out of whack and we had a lot of doctors collaborating on what to do to get things functioning properly for her.
While she was in the hospital and shortly after she got out, there was 200ml of gastric fluids draining out of her stomach every day. That's a little less than 7 oz. We were infusing some of it back into her J tube while battling the blistering diaper rash that the caustic bile was giving her. She was trying to get over the C. diff infection that she got in the hospital. (and yes, I am still 100% convinced that she picked it up while we were at the hospital) She was on 6 medications a day, which equalled about 12 doses a day. Since we were draining so much fluid out of her, we were having to add Pedialyte to her formula in addition to the water it was mixed with so she wouldn't get dehydrated. If we didn't drain her stomach 24 hours a day, she would vomit large amounts of bile, which was really disgusting and made us feel really bad for her. Life was C*R*A*Z*Y.
Fast forward to now, she is SO much better off than she was then. Her G tube output has gone down so much that we don't even measure it anymore unless it's really high. She's only hooked to her feeding pump for about 12 hours a day now instead of 20+, which has been SO great for her (and for us!). We still don't put any meds except her probiotic and the occasional Maalox into her stomach, but we put 8 oz of water+formula into her stomach 45ml at a time during the day. We got her off of the elemental formula she was on (Neocate) and put her on a peptide-based formula (Peptamen Jr.) and even though the transition took almost a month, she is doing well with the new formula. She still struggles from time to time, but overall I feel like her symptoms are being managed now as opposed to 6 months ago when we were frantically trying to get things under control. For some reason, this past week I've been feeling the frustration of not having a real, solid diagnosis for what's causing her GI problems. Having a child with undiagnosed and difficult to manage health problems is like having an itch on your nose while you're wearing a mask. You just feel this overwhelming need to scratch that itch but no matter what you do, you can't quite get to it.
Anyway, today, reading through the last 6 months' worth of my little book o' Raya helped me to see how far we've come and helped me to feel a little bit more at peace with not having the answers that we would like to have.

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