Today's GI Visit

Let me first say how much everyone's thoughts, prayers, love and support mean to John and me. We've received so many messages on FB, emails, voicemails, texts and messages here on the blog. This is a very difficult time... the most difficult since her extended time in the PICU in 2004, but for very different reasons, of course. We can feel all of you supporting us, loving us and our sweet girl. "Thank you" seems like such a small phrase, but please know that it is said from the bottom of our hearts. We wish we could get back to each and every one of you individually, but right now we are focusing on taking care of Gracie, Preston and ourselves.

As for how Gracie is feeling, she is essentially the same as she's been since Monday evening - - miserable, lethargic, disengaged, sleeping a lot, crying a lot, gagging, retching, so many secretions (a response to pain and something entering her stomach and running through her digestive tract) that I literally don't turn off the suction machine as I switch back and forth from suctioning her trach and mouth.

She was seen this morning by the Assistant Chief of Gastroenterology, Dr. Grant. He is one of two docs that our team up north recommended, but he doesn't take new patients, so this was our first visit with him. I was happy to finally get to see him, but obviously not by the circumstances. He spent a considerable amount of time with us, listening, asking questions, listening some more. He really heard me. Not that her current doctor hasn't heard me, but Dr. Grant heard a lot today, all at once, and really tried to take it in before he jumped to asking questions - - which is what a lot of docs do... try to provide a solution before they've really listened to the whole problem. (We've been to several doctors for these issues over the years... she's been seen by two doctors at Sutter Memorial, a doctor at UC Davis, a Fellow at Stanford and now three different doctors at CHOC.)

Anyway, we left there with a game plan: labs ordered, an urgent Upper GI study ordered (to check things out and to rule out a condition (SMA) that is caused when the body is so thin, the intestinal tract and spine collide causing an obstruction, thus excruciating pain) and her Neurontin increased significantly (this will likely make her out of it, but that's what we need to get nutrition in without causing so much distress). The bottom line is that we need to find the problem... and we might not have time to find it (since we have spent seven years trying to find it already) before her little body needs to be rescued nutritionally. The rescue would be to put in a central line so we can give her TPN (IV nutrition). This decision is one we've been headed toward for a long time, but it's not a decision to be taken lightly... for reasons that I am, quite honestly, too tired to detail here now. We will do this, most likely, within the next two weeks if we can't force feed her through the pain and discomfort successfully (and have her keep it all in). I am not overly optimistic about giving her meds that make her a "zombie," nor are we okay with her being shut-down like she's been this week (and so many other weeks of her life)... having her go through her days disoriented and checked-out is not a good solution. It's not a way to live.

This afternoon, when Gracie and I got home and I went to feed her, she had about 10ml of old blood that rose in her G-tube. She needed to be suctioned, so I clamped the tube for a second and she proceeded to throw-up more old blood. I immediately gave her Carafate (a med that helps heal the stomach lining), called the doctor (who had already left for the day) and finally got a call back this evening. This is not the first time that Gracie's gastritis has flared up, but it's the worst it's looked in over three years. She still has a tremendous amount of old blood in her stomach (which is shocking considering I have had her tube vented all week and haven't seen any new blood). So, I figured they'd want to admit her, but they don't - - it's a three-day weekend and unless the blood starts looking fresh (bright red) or she starts looking/acting worse (how much worse can she get?) or dehydrated, they'd rather her be able to be miserable at home than in the hospital. Dr. Grant ordered Carafate (um... already doing that, Dr. Grant...) and asked me to keep a close eye on her intake, output and behavior (um... already doing that, Dr. Grant). He wants to be kept apprised of any changes and be paged if we decide the ER is necessary. I guess I should be flattered that they know I am doing everything here that they can do there (aside from IV fluids if she'd need them), but I really just wish they could start the labs and studies now, instead of next week.

The central line is, as I've said before, not to be taken lightly. It is the last option we have. Even as we put her through this current set of tests and labs, the consensus is that's what Gracie will be getting within a couple of weeks.

Knowing we're headed to our last option to solve a problem that can't be identified is a scary thing...