Updates... Good and NOT Good...

GOOD:
John graduates on Halloween! HE DID IT! I am so proud (PROUD PROUD PROUD) of him... more on that later. (And a huge post following the graduation ceremony, of course!)

House hunting was unsuccessful - - and successful - - all at the same time. The trip with my mom and the kids proved to be a good one, in that we found the area that we want to build our new nest. We did not, however, find a house.

John and I also flew down for the day (really only three hours from the time we picked up our rental to the time we turned it in) to see one house that we thought was the "one." It turned out to be a dump. The trip wasn't a total loss, though, because John spotted a "For Rent" sign on a home that hasn't been heavily advertised. My mom so generously offered to help us look, so we are paying for her travel expenses and she is down south right now checking out that house and some others on our behalf. Fingers crossed, please!

NOT GOOD:
More stressful and concerning than making moving arrangements and setting up our new nest is what is going on with Miss Gracie...

Gracie has always had major GI difficulties... MAJOR. I have posted about them on this blog before. Years of cyclical migraines, gastritis, intolerance to fat, intolerance of significant volume, small bowel lymphoid hyperplasia, slow emptying, GERD... the list is really endless. Anytime she is stressed or sick, it first manifests in her little gut. We have always struggled to meet her caloric requirement for growth & nutrition. Proper hydration is always a concern. On a good day she will barely meet her maintenance requirement... as of late, a good day is rare. And, without proper hydration so many things occur - - headaches, poor digestion, irritability, etc. So it is truly a vicious cycle... and one that we can't seem to resolve.

Since her pacemaker generator replacement, she has down spiraled with her ability to tolerate her feedings. Her weight has plummeted to a a mere 25.4 pounds. No one knows what to do next... and I have truly never been more terrified. It's taken me days to post about this because I was hoping that by some miracle I could post about the problem and the solution, but there isn't one. I fear that her little body is rejecting nutrition, and coupled with Gracie's newest behavioral issues regarding feedings, she is rejecting her feeds. Her brain and her body are working against her...

I have had numerous conversations with her GI doctor... it's so unsettling that she doesn't know what to do next either. I think of all the things we've already tried over the years... a nissen fundoplication, bypassing her stomach (she had a G-J tube for almost two years with no change), drip feeding her nearly 24 hours a day, keeping her G-tube vented so that she constantly can relieve any gas pressure. In general, a slow, constant drip feed seems to be the "best" way to feed her, but hinders her mobility, prohibits her from any gross motor work, angers her to no end because she feels "tethered" to the feeding pump and pole, and offers her little Independence because an adult is always one step behind her with the pole in tow. We've tried bolus feeds (where she gets a large quantity of formula through a tube and syringe over a 20-30 minute period). She has never tolerated a true bolus - - even at 5 1/2 years old, she can't tolerate much more than four ounces over 30 minutes and because her motility is slow, she can't have another feeding for at least three hours. Today and yesterday, she threw up more than she kept down. Her night feedings are not well tolerated at all... we have to dilute the richness of the formula and feed her very slowly in order to keep her from coughing, retching and grinding her teeth in discomfort all night. Unfortunately, we HAVE to feed her at night to 1) try to keep her hydrated and 2) any calories she gets during the night are crucial. These issues coupled with her already "very iffy" sleep pattern results in a very long night in our home. (Gracie is famous for the 'night parties' she has usually several times a week. She has never required much sleep and often gets it in two segments of time at night with a several hour gap of wakefulness in between.)

I worked so hard to get a little weight on her before her surgery... but at that point, she wasn't insisting on her feeding pump being "off." (She signs "food" and "off" and is very insistent about it. Eventually, she will just sign "off off off" over and over until it's disconnected.) And, by "insisting" I am not just talking about her signing. If I tell her "You must eat" or use her timer clock to show her how much more time there is, her behavior becomes more self-injurious. She will bang her head, smack her fist into her mouth or smack her head. She will work herself up into a sweaty frenzy and then throw-up because of it. So, really, I can't win. It seems that she is for most feedings, having either true discomfort and pain - - or significant behavioral issues that result in emesis.

She tolerates the feeding pump much better in the car or the stroller - - I think because she is not hindered by it in those settings. Knowing that, I thought that our road trip down south would allow time to "fatten her up," but because she was sitting up (either in her car seat or the stroller) most of the day, she was really uncomfortable and didn't tolerate feeds well at all. She coughed, had increased secretions and would cry the minute she saw the tubing coming near her. And, she was always so relieved to be back in the horizontal position. She never fussed about being upright as long as she didn't have to eat.

And... in all of this, I have to consider that the more obsessive behavior regarding her feedings is her way of communicating. She might be trying to exert control in her life - - we all want some control, why would she be any different? She has very few things that she truly controls... and really, when you think about it, how incredibly frustrated would you feel if someone were constantly trying to make you eat? Is she expecting that it will be uncomfortable and thus reacting accordingly? For her whole life, we have always said that it would be so much easier and more comfortable for her if we didn't have to feed her. And... the other sad part of all of this is that she wants to eat orally so badly... she loves to taste food and begs to eat when we do... but she cannot swallow. It's a cruel irony.

Then there are all of the changes that have occurred in her life... perhaps increased "gut" sensitivity is how her body is coping with all of the stressers. John's sporadic appearances over the last 6 months, her Papa has been gone since July, Gracie's nurse left in July, one of her home-hospital instructors stopped seeing her, she started school in August, she had surgery in August... these things are all BIG things and BIG changes in her life and it would certainly make sense if her body was reacting to them in this way.

So, between the obvious discomfort with her feeds and the behaviors she's exhibiting, it's incredibly difficult to feed her. One of her medical "team members" actually said to me last Friday, "She is tube fed, so you really can force-feed her if you need to." I was completely flabbergasted by this... I already feel like we are force-feeding her... and it's wrong on so many levels. There is real pain for her and I have to sit there and look into her eyes and make her deal with it... I am actually causing her pain by feeding her. No wonder she has behavioral responses when it's time to eat. If we continue on this path, we will lose her emotionally - - she will not trust us, she will "check out" of the world, I am sure of it. But on the flip side of that, I cannot begin to fathom what we will lose if we can't get this under control. Medically, if something were to come up for her, her little body is so underweight and malnourished that she has no reserves. I am terrified and so is John.