Wednesday, October 28, 2015

Brayden's surgery is set

On Monday, we sat down with the surgeon to discuss the plans.

Brayden will be admitted to Children's hospital on Nov 10 with a surgery scheduled for the Nov 12.

It has been decided that Brayden will get the surgery for an ileostomy and to have his colon removed.  The ileostomy is much needed since we have not been able to get the stool out of him with out a lot of difficulty for many months.  He will also have his colon removed to deter from any future complications that could happen since he also has a redundant colon (an extra curve/loop in his colon).

Brayden will be admitted a couple of days before the surgery so he can be cleaned out (get out all of the poop).  This is not something they are comfortable us doing at home since he does not respond well to any clean out and he needs to be closely monitored.
  • A couple of days for clean out.
  • Surgery 2ish hours.
  • A few days for the ileostomy to heal.
  • Then food, through his j-tube, will start.
  • Watch the output from the ileostomy, which is a concern since there will not be much space from the j-tube to the ileostomy for things to be absorbed that there will be "dumping" to much out and they will have to closely watch it and make adjustments to his feeding.
As the surgeon kept talking he was pushing the days in the hospital to more and more.  Jeremy and I are guessing 10-12 days so anything less than that would be great.

Pray that Brayden is stable enough until then.  He has some really rough days.  Last night was bad, unbelievable amount of retching and seizures, poor breathing, high heart rate.  It was a long night.

We are trying to get our house back together since the house fire.  There is just so much stuff to do and so many things missing.  We did get Brayden's room set up and he is so comfortable back in his room.

So many things at once.

Tuesday, October 27, 2015


We want to thank you for your support during this difficult time as we grieve the loss of Ellie and celebrate her being in heaven. Ellie is Jeremy, Jon and Heather's mom and Warren's wife of 43 years. Loved by so many.
Many have asked regarding arrangements:
Viewing this Sunday Nov 1 at 6:30 - 8:30pm, Blue Ridge Bible Church, Purcellville, VA

Memorial Service, Monday Nov 2 at 10 am (Pastor Minter) Blue Ridge Bible Church

Graveside burial at Ebenezer Cemetery (Pastor Kesinger) following the Memorial service

Reception immediately following the graveside service back at Blue Ridge Bible Church

If you have any questions or would like more information please send a private message or an email to any of us. Know everyone is trying to keep up with all the messages etc and appreciate so many reaching out. Please listen to the sermon from Ellie's church on Sunday, it says so much about her and the eternal hope/promises that we have in our Savior.

Tuesday, October 20, 2015

Two Clinics in One day - One Big Decision

Brayden started the day in Bone Clinic at Children's.  First a dexascan to check his bone density, then talk with a team of doctors.  The scan did show his bone density is improving but still not on the chart.  It is improving, which shows he is benefitting from the bone infusions.  The ortho wants him to get his AFO braces very soon (which he has been wearing for years but his last pair was tossed from the fire and we have not had time to replace them yet).  She also wants Brayden to see a Physiatrist at Children's to help with Brayden's equipment, braces and positioning since Brayden's hips roll out, he has significant curvature in his spine and his ankles roll up; all things the otho and physiatrist watch and address.  Brayden also needs to get back on schedule for the bone infusions every three months (he is off schedule because this summer's mess).

The afternoon was spent in the GI Motility clinic.  The appointment we have been waiting for, the appointment that determines the next major step for Brayden.  The doctor walked us through all of the test results (barium enema, biopsy, sitz marker, colonic manometry, anorectal manometry).  Brayden lower GI system is not working, colonic inertia.  And when he does have a bowel movement it immediately wipes him out/depletes him in some way that he is very lethargic and sickly.  As the doctor said, "teetering on the edge" and that "we have become accustomed to being on the edge we do not realize how close we are with him" (translation: he could spend more time being critically ill or in the ICU similar to this summer, if we do not address things properly).  There are many specifics that show his system not working properly, too many to list right now, but the doctor has the test results that show it all.
It has been recommended that Brayden has a surgery for ileostomy (any other options were ruled out because of Brayden's many other medical concerns).
Ileostomy can refer to a stoma (surgical opening) constructed by bringing the end or loop of small intestine (the ileum) out onto the surface of the skin and to the surgical procedure which creates this opening. Intestinal waste passes out of the ileostomy and is collected in an artificial external pouching system which is adhered to the skin.
We left the GI Motility clinic, walked down the hall and made an appointment with the surgeon.  On Monday we will meet with the surgeon to discuss options within the ileostomy surgery and when it will actually happen.  We assume the surgery will be sooner than later and Brayden will be in the hospital for about one week.

I dread even the idea of Brayden having an ileostomy.  But Jeremy and I both know it is what he needs.  It has been decided, Brayden will have an ileostomy. 

And our house is slowly but surely becoming our home again.  The boys are absolutely thrilled to be home.  It will take some time to get things back in some sort of order (which, as you know, Jeremy and I are oh-so patient people, serious sarcasm).  There is still so much to do.  We are absolutely exhausted, an exhaustion I did not even know existed.  We are thrilled to at least be exhausted in our actual house.
Please pray for Brayden, he has just not been himself for several weeks now.  Pray that we are clear about the path to take for him.  Pray that Jeremy and I find some rest (and not the sleeping kind, our exhaustion is mentally and emotionally).  Pray that Carter and Luke handle every thing as well...praying we are not scarring them for life but shaping their character for the better.
It was a long day, long week, long month...long, long, long...

Friday, October 9, 2015

Where are the Jenkins?

That question can be asked in so many contexts.  Jeremy and I seemingly have gone off the grid.  No, we are not intentionally ignoring anyone, just so many things happening all at once.

For starters, we are still in the temporary house on the other side of Waterford.  However, starting next week, they will be moving our contents back into our house.  I have been informed that the boys will be sleeping there, even if their beds are not ready yet; they are just that ready to get out of this temporary house.  Brayden and I will be back in our house when Brayden's stuff is set up and ready to use.  It seems that in just over a week we could be back in our house!

Brayden has been able to stay away for the hospital and doctors for the most part.  Although I did get calls from the bone clinic that he needs to be seen, soon than later.  We had to cancel a bone infusion and an appointment for a dexascan because of hospital stays.  They want him back on track.

The big day for Brayden will be October 20.  The morning will start in the bone clinic for the dexascan, x-rays and meeting with the bone clinic team.  A couple of hours later is the big GI appointment with the Motility Team.  They will review all of the test results with us and discuss the next step, which seems to be surgery for some sort of ostomy.  October 20 will be a long day, but hopefully will be a productive one.

We need some resolution to his motility problems, he is currently having a rough couple of days.  Gagging, retching (which can last for many consecutive, seemingly long, minutes), tired, just not himself.  We are going to have his blood work done, just to check.  I am really praying he can be stable enough till we get through the move back in to our house.

Everything is keeping us busy and stressed.  Stressed to levels I did not know we could handle.

If you cannot find Jeremy working on our house, then he may be at football with Carter and Luke.  Their seasons have been a welcomed distraction to all things chaotic, football season is always something we enjoy.

If you cannot find me, then I am probably driving Brayden back and forth to school...which means I am probably sitting on Route 9 or Route 7 in all of the construction traffic.  I will be thrilled once we are back in our house (away from Route 9 and 7) and have Brayden's bus.  If not driving Brayden, then I am frantically hitting up every home store in the metro area to find replacements for our furniture, electronics, linens, etc.  I have dragged my poor parents around to many stores to help.

If you need to reach us, you can always email us efcarrie at aol dot com.  We may not answer right away but we will try.