Harvesting Joy

Okay. So the curcumin (tumeric) listed bloody stools as a side effect so that has been discontinued since Sunday when we noticed problems and he hasn't had any more problems since 2am Monday. Feeds were also stopped but will start back up today slowly.
Sunday night and Monday pain was our biggest issue and the pain and palliative care team almost had to move into the room yesterday. Instead of the coma they upped his methadone and took him off the dilaudid and versed. He wasn't responding at all and spent most of the past 36 hours frowning, grinding his teeth and writhing in pain. They kept upping his dosage and we were bumping him everytime the machine let us with no changes. He was literally getting as much methadone as a 1000 pound horse. And it wasn't working. They even bolused his pentabarb twice and it did nothing. He should have been comatose and it had no effect at all. It was an awful night. Our poor nurse will probably forego her pension rather than be assigned our room again...dysfunctional equipment, an exhausted (well mannered) sailor-mouthed father, and one seriously unhappy child. This morning our Super Doc tried giving him a small iv dose of pentabarb in a different line and he went down for the count in no time at all. Sooooo, it was something with the line and not Jameson being the world's first person to not respond to pentabarb.
This led to an ultrasound and echocardiogram to make sure his femoral vein or abdominal vasculature heading back to the heart didn't have a clot in it. Both came back fine so it may have just been a problem with the meds crystallizing in the old IV line, but everything seems to be okay at this point.
We are slowly starting up feeds again today. We are adding in some iv lipids and sugar to help with calories so he stops withering away. He lost an iv in his foot last night and it is super swollen and puffy and blistery. Poor J.
Yesterday we had another ENT come look at the trach and give us a second opinion. At this point there isn't too much we can do, but he made some good suggestions to hopefully help J be more comfortable and heal better. We are going to get a flexitrach, which is more flexible and softer. This will be so much better for him because he has a super short neck and his trach is always poking into his chin and chest. It can also move side to side a little more and that will lead to easier positoning and comfort too. Hopefully!! We are also going to try wet/dry dressing changes with vinegar(some medical version) to keep it cleaner and healthier.
Right now the massage therapist is working with him and giving him some healing touch and massage therapy. He does really well with it and they stop in our room often.
Handoff, Meghan is apparently now going to get a massage while I (Hubs) scoot further and deeper into the board-like futon. Who wants to bet Meghan becomes a believer in the Chakras and healing touch in about 5 minutes.
So today it looks like we might actually get his pain under control again and the pediatric radiation oncologist is coincidently going to a conference in Boston this week and will present his case to field ideas. Not exactly encouraging news, but at least we know all interventions are being explored, thank you Team J!! Yes, all of Team Jameson has been fantastic - a heartfelt thank you to all of you who have participated in his care!! And thank you for your continued prayers and staunch support! Oh, and it only took Meghan about 29 seconds...I think she may now be more sedate than J...who knew?