Wednesday Night

Brody has "slightly" inproved the last few days-- His nerve pain (back and leg) has been pretty rare the last few days (he did have some back pain a few hours ago) so we are hoping the nerve pain meds he has been receiving are coming on board-- they all take time to start helping.

His Belly pain has been much improved since his NG tube was placed-- it still occurs when he is awake and is sometime pretty severe but he has been resting much better the last few nights (sleeping 7 or 8 hours at a time) so him and I (Bill) have been getting some more rest. We have been trying to get him to lay off the morphine button with the belly pain-- as it doesn't seem to help him much and the pain usually passes quickly whether or not he pushes the button.... if it does persist or is particularly painful then we do urge him to push the button-- (for those that do not know-- he has a PCA pump-- which will deliver a small dose of Morphine if he pushes a button-- it will then lock out for 10 minutes before he can get another dose). His Basal Morphine (constant drip) has been getting taperd and was discontinued a few days ago and he has tolerated this ok. His button push morphine dose was reduced today... the whole idea is to try and manage his pain other ways (no Opiates) which can slow down his gut motility and may be contributing/causing his belly pain.

His NG suction was discontinued today but the tube is still connected to a small bag and' any excess gastric liquid in his stomach will gravity drain to the bag-- this makes us a bit nervous as him not tolerating this will be him vomiting-- and we don't want him to throw up his new Chemo.

He has been reluctant to get out of bed which is troubling and not helping his gut motility. Although he can get up and walk with assistance (the assistance is holding his hand for some balance and moving his IV poll and helping to carry his NG and Nephrostomy bags)-- he seems to either have pain when sitting in a chair or is afraid of pain when sitting in a chair-- I'm sure he would tolerate this pretty well if he would try it more-- we need to be a little bit more insistant on this.

We are exploring nerve block options if we cannot get his pain under control-- it is possible to either temporarily or pernamently block the pain the nerves in his leg and belly t is nice to know this is an option if we can't get his pain under control or if worsens-- there are pros and cons with having this done as it can mask symptoms.

We are all managing as well as can be expected-- we have a meeting tomorrow with people from all the different teams that are managing his care here (oncology, surgery, GI, AIM team etc)-- the idea of this is to try and get everyone on the same page on where we want to go and the steps to get there. Talking to Trish we would love to get Brody home)whether we can do this with him on TPN is something that will have to be addressed-- he also cannot be on Morphine and his pain must be managed) We may have to settle on getting him back up to Toledo Hospital-- while the care we are getting here has been excellent- we are about 2 1/2  hours (143 miles) from home and this has been difficult in and of itself. This hospital and Ronald Mcdonald house are very nice, Brody's room is on the 12th floor with giant windows we can see for 20 miles-- so if you have to be stuck some place-- this is a very nice place to be stuck but even after 4 weeks, it is still somewhat unfamiliar.

Trish and I did have a very nice surprise yesterday.... a friend and co-worker of mine Dan and his wife Shirley, arranged to have a very nice steak and seafood resturant deliver an excellent meal to the Hospital for us-- Brody was feeling pretty well at the time and so we both got to sit down to a nice meal together in the Parents lounge with a nice view of Columbus... Thank you so much for the delicious food and the short but sweet break from all of this. Dan also went over to my house and did a bit of needed maintenance on my Air Conditioner that I have been unable to get to the last 6 weeks or so.

Thanks once again for all the support we have gotten-- I just got done waking up Brody to take his oral chemo-- cross your fingers he keeps it down,

Bill