Busy Weekend

As usual in our family (not just Brody)- we always have things pop up on the weekend and this one was no different... On Saturday-- Trish took Geordi back up to Whitehouse on Saturday afternoon and came back that night--Jaden went along to see the dogs Geordi has a boyscout camp that started on Sunday and he needed to finish packing and stuff.

Brody started having increasing belly pains-these pains were similar to his obstructed bowel pains-- hurt really bad for a few minutes and then ease off for a period of time and then come back-- sort of like belly gas pain cramps-- these seemed to worsen overnight on Friday and vomited Saturday morning-- it was once again the green color he had when his bowel was obstructed. His NJ feeding was discontinued most of the day and we resumed it at 3 pm. About 4 pm he started having increased belly pains (frequency and severity)-- and in addition, while he was still putting some liquid into his ostomy bag, he was putting in very little gas-- although I could feel signficant rumbling in his belly-- I expected more gas then anything else if his bowel was moving. They took some X-rays and there looked to be some liquid/gas seperation in his bowels (like the bowels are not moving stuff through them).

About 5 pm or so we got results from some cultures that were drawn on Friday-- both his urine and stool tested postive for an unidentified (yet) type of yeast infection-- some of these can be dangerous so they took Brody down and he had a kidney ulrasound done to check out the kidney for signs of any problems (his kidney function labs have been excellent)-- they also checked his port (central line) for signs of a clot as this can be a potential colonation site for bacteria where it enters his jugular vein-- both hid kidney and central line looked good but his belly pains continued to be pretty bad (on the bright side his back and leg pains have not been much of an issue). I asked the resident to discontinue his NJ feedings until we can get a handle on his belly pains that seemed to correlate with the feedings. They have NOT stopped his TPN feeding via IV so he is still being nourished.

The belly pains continued overnight and into Sunday morning but decreased in frequency and severity overnight so we both thankfully got a reasonable amount of sleep (at least 2 hours at a time)-- they did pick back up from about 9 til 11:30 and then settled down again and he slept for a few more hours-- when he woke up they were continuing pretty bad-- they did another x-ray and the bowels looked to have worsened sligtly-- the GI doctors and Surgeons evaluated him (surgery was consulted to evaluate the functioning of his stoma).. All the doctors pretty much agreed that his bowels just are not functioning properly probably due to a combination of the infection, surgery, as well as continued morphine use and the best way to treat his belly pain is via decompression (an NG tube)-- the NJ tube is too small and not designed for this so Brody had to have another NG tube placed in his other Nostril (he has an NJ on the right and NG on the left now)-- as expected-- he vomited quite a bit of green vomit again during the placement and seemed to feel alot better after-- he has also drained another 300 ml so far out of his NG tube (it is being suctioned by a very soft intermittent suction)-- he has had some belly pains since the placement some severe but they seemed to be less frequent so far.

After the NG tube placement we gave him a bit of a break and then we (Trish and I) replaced his Ostomy wafer (this is the tape part that goes around his stoma-- the actual colostomy bag clips onto this (kind of like a tupperare seal)-- these need to be replaced at least weekly but so far we have not had one go more then 5 days without starting to leak (gets past seal and tape)-- we were at day 5 and didn't want to go another day-- his stoma is shrinking and healing nicely (as it is supposed to) and this went ok.

In addition yesterday-- the IV in his hand (his Port can handle all the stuff he has to get) failed again and he had to get a new IV placed in his other arm-- they of course numb the site where he is poked but he still handled this very well.

Brody has handled all of the above remarkably well-- he has a toughness I can't describe-- he has an ability to move on from bad episodes to good instantly-- as I write this at 11:30 pm on Sunday-- he is playing on the playstation a game called Infamous 2.

+++++

Brody wanted to go to sleep last night so I paused this entry until the morning so the laptop screen light wouldn't keep him up. Brody's belly pain has significantly improved since the NG tube placement-- he is not at all happy with the other tube but I'm sure he feels better. He did take his oral chemo last night and they just paused the suction on the NG for an hour or so to try and let it absorb-- this chemo is primarily absorbed in the stomach so we are hoping he got his full dose absorbed. His nerve pain (leg and back) seemed to increase overnight but so far this morning hasn't bothered him too much.

In addition to all the issues above-- his BP and heart rate have been going back up the last few days-- at this point I just want him to have a break from the pain-- it isn't constant but either the belly or nerve pain have been waking him up and a hospital is already not a great place for getting rest... thankfully he (like his dad) is a hard sleeper so can usually fall back asleep fast if he isn't in pain.

Our immediate goals for going home-- is still pain management and gut motility (we have to transition him off of the TPN and on to the NJ feeding)-- he will also need to complete his antibiotic course which should finish at the end of the week.

We are hoping to manage his pain without morpine which isn't helping his gut motility

Sorry for writing so much-- a lot has gone on and not much good :/

We are ready for some good news

Bill