I need to express a very heartfelt apology to anyone I have had words with over the last several weeks. I have been/still am bitter, frustrated, tired, angry….. I have not been able to find an ounce of compassion for everyone who exists in the “other” world. My days are filled with anxiously watching, logging, researching and caring for Gregory. Waiting for the sublime moment when he has a normal stool and wanting him to run around and act like any other healthy four year old. Sitting at the sidelines, watching people complain about routine, regular stuff. Watching as people continue on with their daily lives……. I’ve had a major life altering experience. I honestly expected people to catch my vibe and ride along with me. (There’s my eternal Pollyanna, again.) Who did I think I was kidding. Maybe I’ve not expressed it well enough, though.
Every moment that we have on this great green planet is a moment to cherish. Moments to express love & appreciation for everything around you. Moments to make choices that enrich your life, not detract from it. Moments to choose to eliminate the negative and accentuate the positive. With every day there comes some negative. How you choose to deal with it, sets the tone. Hearing complaints about the chaos of Christmas took me over the edge a time or two. REALLY? You get to spend time with your loved ones, healthy, fully functioning loved ones, with out the spector of life threatening illness, and you are complaining? I realize that we are programmed to react this way. What I’ve learned is that I have choices. I don’t have to be stressed out over some “tradition” that comes along. I can choose not to observe it and create what works for our family. Did you know that you can too? Really, you can. Like a dear friend of mine said, (not is so many words) your dinner spread will never look like Martha’s. Your handmade presents will always be unique, your holidays will never look like a Story Book. Yet, they are YOURS. Moments that can be remembered, enjoyed and repeated throughout the year.
Add to all of this, Parker Brown died on the 20th. His mom, Sarah, was the very first cancer mom I had a real conversation with. She is an amazing woman and has nurtured an incredible family. Through six years plus of Parker’s cancer treatment. Parker’s service is this weekend in Omak. I send all my love to them and wish nothing but peace and laughter in memories.
Even if we had not been inpatient over Christmas, it still would have been really weird and stressful. Larry, Curtis and AnnMarie came down to the hospital on Christmas day and it was hard. Gregory was still feeling quite yucky. The hardest part, I have to admit, was Curtis. He had an absolute melt down and totally fell apart. Which pissed me off and also made me really sad. I felt completly helpless, as is always the case with his melt downs. I was finally able to get my own emotions under control and he let me hold him for a few minutes while he cried and talked. AnnMarie was precious as usual. The kids were able to come up to the unit, simply because it was Christmas and there were only four of us on the unit. The fact that the hospital was nearly vacant was so nice.
We were discharged yesterday and are settling in with our new “appliance”. Gregory’s pain for his G Tube placement is subsiding quickly. For the road trip home, yesterday, I gave him a dose of Oxycodone to make him feel less pain with the added movement and excitement. He was so very chatty and happy on the trip out to the water. We stopped at our home health care company to pick up our needed medical supplies, on the way out. This is the same place where he received his H1N1 vaccination. He was very clear about not getting any pokes while we were there. Instead of acutally going in, they were awesome about bringing everything out to the car and reviewing everything car side. We have new supplies for his G Tube and I am now administering Albumin via IV. He is wasting albumin and we need to supplement it. He is currently on 10 hour G Tube feeds, 10 hour IV TPN feeds and a one hour IV Albumin infusion. His current state of health is so complicated. His gut scope and biopsies showed no signs of GVH. There was evidence of Gastroenteritis. Doc and I had discussions regarding malabsorption. Doc had the tissue slides sent to Seattle (Seattle Cancer Care Alliance) for them to examine and advise us. Right now I do not know what this means or what the plan is. We are currently managing his symptoms, supporting his body function and maintaining his nutritional needs. He is continuing to be negative for any kind of bacterial or viral infection. We have been successful at keeping him safe. Before we left, yesterday, we had a visit from Physical Therapy and Gregory does have limited range of motion and tightness in his ankles, his hamstrings and the muscles of his thighs. We were sent home with exercises to stretch his muscles and increase his range of motion. He still is experiencing pain when he stands and cannot bear weight on his feet. We have discontinued his Fluconozole (anti-fungal) and lowered his dose of Tacrolimus. Hoping this combination will relieve his symptoms. We return to clinic next Tuesday to check progress.
Curtis and AnnMarie are coming out today, for the day, and I’m hoping that some time spent with the sibs will distract Gregory and bring him some happiness. I want to thank everyone who has left comments of encouragement and support. We have been at this for awhile now and I’m sure that finding words is quite challenging. I mean, what more can be said, right? This sucks, it’s been ongoing for some time and will continue. If I get crabby and snarky, from time to time, remember it’s not personal. It’s about me, not about you. Sometimes I need to pop off once in a while to vent or else I will certainly spontaeously combust.
As always, remember to love the ones your with. ’til later, gotta jet.
Hitting the Road!!!