Update

Brody has continued to experience on and off belly pain with varying severity and frequency.  He sometimes can go long periods of time (hours) without any episodes and then other times as soon as one episode ends a few minutes later another starts.  He has both an NG tube and an NJ tube still.  The NG tube is hooked up to suction to help lessen bowel distention.  A big question that still needs answered is whether the gut not moving due to an ileus (gut simply not contracting as it should) or if it's an obstruction that is preventing movement through the GI tract.  If it's an obstruction, it would need to be determined exactly where and what is causing the obstruction and then determine if it can be corrected surgically.  The surgeon came and spoke to us briefly to let us know that Brody needs to have a CT scan done today with oral contrast so that they can get pictures of good enough qualitly to determine exactly what is happening.  Everyone was hoping that he was experiencing a temporary ileus that would correct itself but so far this just does not appear to be the case.  It's possible that there may not be an actual obstruction and that he has chronic gut motility problems.  This is, of course, a very difficult situation too.  Neither scenario is good one.  We will know more about what options we may have to handle Brody's belly pains after the CT scan. 

 

On a brighter note, Brody's back and leg pain have remained much improved.  He does still have these pains but not as frequent nor severe as they once were.  He has started to complain more about pain in his left foot now too though.  We will be talking to the AIM team about this.  He also has started to have pain in his right foot when walking or standing.  (the right foot is his good foot). 

 

The AIM team has been talking with the surgeon and is waiting on the evaluation of the surgeon and reviewing MRI and scans further before deciding how best to proceed concerning any nerve block options to treat Brody's pain.  We are glad that there are various nerve block options that could stop his pain.  Just knowing that this pain will not just keep continuing on indefinetly is a great comfort.  It's extremely frustrating having to wait to do something that could just stop the pain.  But for now, we do have to wait so that best means of doing so can be determined. 

 

Brody is not yet feeling well enough to come home.  The culprit of his belly pains needs to be determined and his pain needs controlled far better before we can come home.  He will be able to come home on either TPN or NJ feeds whatever the case ends up being for this.  The AIM team and discharge planners here have started to make contact and set-up care options for Brody's eventual return home.  We don't know right now how much longer he will be in the hosptial at this point but we are trying to get things lined up as much as possible to be able to get home when we can. 

 

Brody has been taking Votrient to treat his tumor for the past week.  He has to take this by mouth.  We are unsure of how much of this medication he is actually able to absorb due to all of his gut motility issues.  We are hoping he is able to absorb most of it and that it's actually working to slow the growth of his tumor.  We will not know really how effective or ineffective the Votrient has been until he has scans done.  (Maybe we will have a bit of an idea from the CT scan he is getting done today.   He has only been on it for a week though.  It may be too soon to tell).  If Brody needs surgery he will need to wait at least 2 weeks or more before most other chemo options could be added.  He will likely have to stop the Votrient for surgery too if he needs surgery again. 

 

We still have many unanswered questions right now and answers to these will help dertemine next steps.  We do not know what to expect in the next coming weeks right now.  We do know we have some very difficult and nearly impossible decisions to make coming our way.  I will not get into all of these questions racing through our minds right now.  They are not questions anyone wants to ever think about asking regarding their child.   I will try and update more on these once we have the CT scan results. 

 

Brody greatly enjoyed a couple visits yesterday and Wednesday from the Musil family.   The Musil's are wonderful family friends.  Amy Musil was our boys' babysitter before moving to Lima to open her own diner (Lulu's diner in Lima, Ohio.....a great place to eat with great owners too).  She has three boys (Austin, Ashton, and Aiden) roughly the same ages as our three.  They all have a blast everytime they get together.  They can go for long periods of time without seeing each other (now that we don't live so close to one another anymore) and yet they are still the greatest of friends.  Bill and I absolutely enjoy seeing all the boys Amy, and Justin (Judd) too.  Brody was so happy to get to see them again.  It had been awhile since our last get together.  The Musil's stayed at a hotel nearby and took Jaden with them for the night to go swimming in the hotel pool and then to Cosi the next day (yesterday).  Jaden had a lot of fun, of course.  And, we are glad Jaden got to enjoy such a fun escape from the hosptial for a bit.  Jaden is very reluctant to leave Brody's side.  He always wants to be right here with him and know what's up all the time.  He's a concerned and loving big brother.  It takes quite the enticement to convince Jaden to take a break from the hospital.  We are glad he got this much needed break and had so much fun with his friends.  Brody has been enjoying playing with gifts the Musil's brought him too. 

 

We have several friends in Toledo still continuing to take care of our "mini-zoo" and the house.   Our little Chewy (yorkie) has not been the best behaved dog while we have been away.  He has taken to peeing and pooping all over our house.  Our friends Barbie and Carolynn have been trying to keep this cleaned up.  Carolynn has been busy cleaning all the carpets in our house and has had to redo areas.  Yesterday, she decided to do some handy work to our dog door opening and fixed things so that Chewy can come inside the house to get out of the weather and get to his food and water bowls and his bed but he is not able to get into the rest of the house.  Our other dog, Tori, will not be able to come in this way anymore and will instead need to come into the garage. Hopefully, this will cut down on messes to clean up at our house.  We are so lucky to have such amazing friends doing such an awesome job taking care of things at home for us.  We have been away for a very long time and we greatly appreciate all the help. 

Geordi is finishing up Boy Scouts camp.  He will be done with camp tomorrow morning.  We have all missed him and are very much looking forward to seeing Geordi again.  Friends of ours sent us pics of Geordi and his friends having a good time at camp.  We haven't been able to talk to him since he has been at camp but I am sure he had a lot of fun.  (No cell phones etc allowed at camp).  There was a parent's night Wednesday night though and some of the parents sent us some pics of the boys having fun.  Geordi may even by arriving by airplane tomorrow.  The dad (Rich Naves) of one of Geordi's best buddies is an instructor for the Toledo Aviation Program (Really, our enitre family and the Naves family are all great friends of each other) .  Anyhow, Geordi may be flying down to us.  How cool is that!!

 

Well, Brody will be heading down for his CT scan shortly.   More updates to come once we know more.

 

Thanks everyone for all the support and prayers through this very difficult journey.