Brody is Not Getting Nerve Block/His Pain Has Improved/Working on Getting Home

Brody has been feeling much better the last few days.  His pain episodes are decreasing in frequency and severity.  They are far more frequent when he is awake vs. when he's asleep.  He seems to be able to stay asleep without pain waking him.  We are unsure why it's so much more frequent when he is awake.  My theory is that when he is awake he starts to feel the pain come on and this makes him anxious and exacerbates that pain into a much more painful situation.  So far, Ativan has been working the best to lessen his pain.  This medication is an anxiolytic.  He is taking it every 4 hours now and seems to be doing much better having this medication given regularly. 

We have decided not to do the nerve block for Brody this week.  The nerve block would be another surgical procedure for Brody and with it's own set of risks.   The decreased gut motility from the procedure is a concern too.  Brody's gut motility seems to be improving a bit the last few days.   We are concerned that another procedure may set him back in this regard.  Also, the anesthesiologist has concerns that the block may not block the pain he has been experiencing. 

The surgeon reviewed Brody's latest CT scan.  She feels Brody is experiencing both a partial obstruction and severely decreased gut motility.  She explained surgical options to relieve the obstruction and also to free Brody of his NJ and NG tubes.   The surgery option would require another ostomy (an ileostomy) and also a G Tube.  The surgery would likely not fix the gut motility issues.  We decided not to pursue the surgery options at this point.  It would be a lot for Brody to go through right now and he may really be experiencing much more problems from very slow gut motility rather than the partial obstruction. 

Brody's pain medication was changed from morphine to Nubain on Saturday.  He seems to be doing better since making this change.   The Nubain does not delay gut motility like morphine does.   We are unsure how much the Nubain (or the morphine) really does to relieve Brody's pain.  Brody told me today that it doesn't make the pain stop but makes him feel more calm about it.  I plan to let his doctor know this in the morning.  It may be better to increase the Ativan dose rather than continue the Nubain. 

Our primary goal before leaving the hospital was to get Brody's pain under control.  On Friday, we certainly felt that Brody's pain was far from in control.  Saturday was a very painful day for Brody too.  Until today, we had planned to give the nerve block a try.  We had decided to stay at Nationwide Children's until the nerve block could be done.  Now that we will not be doing this procedure this week, we are working towards getting Brody home as soon as possible.  The AIM(Advanced Illness Management)  team is working on setting up care options for Brody at home.  At this point, we are not sure if we will be able to do everything at home but we are trying to do whatever we can to get him home.  (If he can't be at home yet/can't be cared for at home, then we will transfer back to Toledo Hospital). 

It may be a few days to coordinate things to get Brody back to Toledo.  In the meantime, the AIM team is checking to see if there is a way that we can let Brody go outside in a wheelchair and visit his dogs in the park out in front of the hospital.  We are hoping that this will be okay and hope to hear the verdict on this in the morning.  Brody misses Chewy and Tori so much.  He wants to pet and play with them and try out the swings in the park too.  If he is able to have a visit from his dogs, we would love to have some volunteers to bring Chewy and Tori down for a visit.  Anybody interested in this, please let me know. 

 

Thanks again everybody for your continued prayers and support.