She lost an entire week

Thankfully, the worst of the cycle appears to be over. Gracie was a little better today - - she was not crying as much, she didn't bite her fingers or hit her face and we weren't having to suction her continuously as she dealt with her feedings. Still, though, she slept a lot. So, while she's better as far as the excruciating pain goes, she still missed nearly the whole day. Don't get me wrong... sleeping all day without pain is way better than sleeping all day with pain. But in the big picture, sleeping all day is no way to spend the day. With the exception of her doctor appointments (which she cried through or "checked out" of), she has literally missed an entire week.

We've been asked by several people what made this cycle so bad compared to others she's had recently. The answer is not simple... and I am not sure I know the whole answer. What I do know is this: the fastest way to help her out of the cycle pattern is to give her body a break and stop all intake for several hours and then once we re-start, move very slowly with Pedialyte and then every twelve hours or more, build up her calories. Sometimes it takes a few days to successfully get back to full-strength formula. The problem is, that in between cycles or illness, we are not able to get much weight on her. When she does gain a bit of weight, she inevitably hits a wall (like she did this week) and we end up starting over. We can't keep chasing a weight that is an unhealthy weight to start with. We also can't keep causing her so much discomfort during illnesses or abdominal migraine cycles (or regular migraines) by force-feeding her. I am sure that's what caused this current cycle to drag on and on. And, it doesn't seem like the medication increase has done much of anything, but, the only way to really tell is to resume a regular schedule (like school, therapy and FUN) and see how she does.

Thus, we are in big debate about what to do next and when. Gracie is scheduled for an Upper GI series on Wednesday, but can't see her regular GI doctor until the 8th. We aren't thrilled to be waiting that long to discuss (and move forward with) the next step. We can continue doing what we've been doing for a while, which is to balance out and time her feedings so that she can "live" - - enjoy her days and tolerate school/therapy as best as possible. (Even though she spends a great deal of her day at school, they only give her approximately 1/8 of her daily intake. When they give her more (and often lately when they give her the normal amount), she sleeps at school - - or she takes a long time to recover and doesn't want to sit up and work/be engaged.) The problem with continuing like this for another week or two is that we will maintain her current weight (maybe... if she doesn't have a cycle again in the meantime) and we are still causing her discomfort. Her current weight is not an acceptable weight. Force feeding her around the clock to the point that she can't function through the "living" parts of her day is not acceptable.

So, I will call tomorrow to find out if we'll be able to discuss Wednesday's Upper GI results before next Tuesday and plan for the central line placement (and all that entails). We have a million questions written down... many of which surround the care for the site and the specific risks to Gracie regarding potential infection due to her trach and the different "bugs" she already harbors in her respiratory system. Having the line is, we feel, her only choice. She needs to be rescued from this pattern and her body's reaction to anything traveling through her digestive system. We can't wait and trouble shoot any more. She will need heart surgery soon... and she can't have surgery at her current weight. Her scoliosis could be contributing to the discomfort as well... and if that is the case, spine surgery might be sooner than later.

Over the last heartbreaking, painful week, we've questioned ourselves repeatedly... trying to make decisions for the right reasons. We have been analyzing what we are doing for her and making sure that these decisions are truly in Gracie's best interest. That is, to say, that we are making decisions to do things for her and not just to her... for her, not for us.

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A huge, heartfelt thank you to our wonderful friends, Jackie and Dave, and their son, Danny, who had Preston over to play (all day) both Saturday and Sunday. Knowing Preston was having a great time and being well taken care of gave me such peace of mind and allowed me to tend to Gracie's needs without feeling like I was neglecting him. As he has other times before when they've kindly helped us out, he had a blast with them. Over the two days they played at their house, went to My Gym, Pretend City, the Tot Lot at the beach, and a barbeque. So this morning, when Preston woke-up, he wanted to know what time Jackie was coming to pick him up!

Other friends and neighbors have been so thoughtful and brought us enough food to feed an army! We had homemade lasagna, french toast casserole, pizza, chicken salad... so much food... from people who knew that we were still able to cook, but they didn't want us to have to think about it. So nice... especially since John worked all weekend.

Thank you to everyone, again, for all of your love, support and prayers. I will do my best to update as we get more information about lab & test results, answers to our questions and the next step in the plan.