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WELCOME, GUEST |
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(1 member)
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Angel Bella …6 |
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JESSICA'S JOURNEY
Jessica Bracy |
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| Category: Home | Sun | Mon | Tue | Wed | Thu | Fri | Sat | | | | 1 | | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 | 11 | 12 | 13 | 14 | 15 | 16 | 17 | 18 | 19 | 20 | 21 | 22 | 23 | 24 | 25 | 26 | 27 | 28 | 29 | 30 |
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NOT WHAT WE WERE HOPING FOR.
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Nov 05, 2009 01:00pm (EST)
Kobe had an appointment with Dr. Greenholz today. I was anxious about finally getting the pathology reports. When we got there we learned that the reports were lost, they were looking for them...no one had seen them yet.
Kobe's x-rays showed that he was moderately full, and there is a lot of air in his little bit of remaining colon...2 things we don't want. We discussed putting Kobe back on versed for his flushes to help him relax, at least until we get him back into biofeedback therapy. Relaxing is very hard for Kobe, the effects show up in how he empties. I doubt I could relax with a tube plugged into my tummy pouring water into my colon either.
The results didn't come in while we were in the office, we got the call about an hour after we left. The news was not good, not totally unexpected, but upsetting just the same. Kobe's bowel (small intestine) shows congenital defects, just like the colon. His bowel has congenital nerve issues, it is inflamed and shows changes in the nerve fibers, they are thickening. Thankfully the bowel does not appear to be as severe as the colon...that is a big relief, but the changes that are occurring and the defects that were found were a fear and are worrisome. If the issues progress at a rate anywhere close to the rate the colon did we are looking at a bowel transplant in Kobe's future.
Kobe also has an overgrowth of bacteria in his colon and his small intestine. This is an issue that may explain some of his pain and the air that collects in his intestines. If that is the case then the new med they are starting him on could bring some pain relief.
Dr. Greenholz and I talked for quite awhile. He explained that this news changes some of our options. He said that there will be more surgeries to come...we are buying time with the colon...and now the bowel. He wanted me to come to grips with the fact that Kobe very well could lose the piece of colon we have left leaving him to need an ileostomy… a surgical opening constructed by bringing the end or loop of small intestine (the ileum) out onto the surface of the skin, his waste would collect in a bag. Thanks to a dear friend I realize that if this is the case, we will deal with it.
Kobe will go from one daily med to five daily meds…it has been a long time since he has been on this many…I have to reframe my mind from feeling like we are jumping backwards and just go with the flow.
The reality is that there is no quick fix, this will be a challenge for him for life. So we have only one choice, and that is to move forward, learn all we can, keep him comfortable and continue to grow through the challenge.
I am sending love, hugs, prayers, encouragement, endurance, patience and good thoughts to Kyle and his family. Waiting is so hard, being in the hospital is so draining and so unfair. Kyle is a warrior, on of my heroes...and Kate has taught me so much about how to handle the challenges of life with grace and courage just by watching her live her life.
A special friend of mine that I met through our hospital stays wrote, "If there's anything I've learned about childhood illness, it's that we become tightly knit with families that endure the pain of watching our children suffer. We feel the frustrations, share in joys, and ache during the pain." I couldn't have said it better myself.
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Posted by Jessica Bracy | Comments: (6) | Permalink
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RECOVERY
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Oct 04, 2009 10:27pm (EST)
Kobe and I just got back from a visit with Grandpa and Judi in Palm Springs...it was just what the doctor ordered! We got some much needed rest and were able to just enjoy being together...he is such a joy, I had so much fun listening, laughing and snuggling...it healed both of our hearts.
Kobe is still recovering, we used a stroller to get through the airport...though he was embarrassed he was also too tired to argue and not interested in using a wheelchair. He still has bandages on his tummy and a foot long tube where his new cecostomy is...we spent the morning of the day we left on our trip at the hospital and will go back Tuesday...it is a long haul, and he is frustrated, but dealing with it and learning to move forward even when things aren't all going his way.
We are hoping for Kobe to go back to school half day starting Wednesday, we will know for sure after our appointments on Tuesday. He continues to inspire us and make us so very proud.
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Posted by Jessica Bracy | Comments: (7) | Permalink
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CHECKING IN
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Jul 08, 2009 07:09am (EST)
Kobe is doing well, he is getting through this in true Super Hero Fashion. We created a Carepage for this phase of his journey...http://www.carepages.com/carepages/kobebracy.
Hugs and much love
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Posted by Jessica Bracy | Comments: (4) | Permalink
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THERE ARE NO WORDS
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Jul 06, 2009 07:16pm (EST)
Thank you...thank you for giving me a safe place to be sad, to think of Kaleb, to celebrate Kobe...thank you for understanding and for supporting me. There truly are not enough words. You all are giving me so much love and support, you are pulling me through. Thank you, I can tell you how much I appreciate you. I may not get here as much as I used so, life can get in the way, but to know that you are here, that Share is here for the good times and the not so good times makes a huge difference.
I will be taking you all with me tomororrow, thank you for standing beside me. To have people who know and understand is priceless.
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Posted by Jessica Bracy | Comments: (5) | Permalink
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BLAH
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Jul 04, 2009 07:23am (EST)
It is nice to be here, it is so safe and comfortable and I feel so scared and uncomfortable...it is nice to have Share to turn to.
Kobe's health has been declining over the last few months, his flushes weren't working and his tummy was constantly distended and hurting. We have put him through more testing and more hospital stays...the end result is that part of his colon has kinked much like a hose and has almost collapsed. While the majority of his colon is stretched out and gotten larger, this part is so stretched it has created a small tube that is not big enough for anything to pass through.
Kobe went in for an outpatient test; however, they found that he was completely impacted up above his cecostomy tube, his surgeon was unable to reach all of the stool due to the collapsed part of colon so he infused it with solution to help break things up and admitted Kobe. Kobe spent the next few hours throwing up, the stool was moving up instead of down...my poor baby was so upset he wouldn't talk or move...he has had it.
We were able to come home for 4 days to let the colon rest before re-section surgery. They will remove the collpased portion of the colon and put it back together and hope it works enough for us to be able to do our daily flushes and keep him comfortable.
This is a rough surgery, 7 to 12 days in the hospital, a month recovery once we get home...he will be put under at least 3 times while he is hospitalized...add that to the 2 times last week and that is way too many in a very short time for me and my nerves.
We are hoping for relief for Kobe...for now. The truth is that his colon is so damaged that this surgery will most likely need to be repeated and eventually he will lose the entire colon...all things we knew, but it is so real now.
So today we are going to celebrate the 4th of July...and tomorrow we are going to celebrate Kobe's birthday, we moved up his party since we will be in the hospital for the original party date. Kobe will turn 8 on July 9, the day after his surgery. His doctor said he probably won't be awake or coherent. The child life staff at the hospital are planning something special for him when he is up for it. I am not sure how I am going to hold up spending July 9 at the same hospital where my boys were born and where Kaleb died.
I have been doing laundry, stocking the house with food for Kev and Kendra, buying birthday party stuff and packing for the hospital...and crying in between. I pray for relief for my boy, I know life is not fair, but this is so unfair for him...he is tired and worn out, he needs a break.
Please keep him in your thoughts as we go into the next phase of his journey. Love, Hugs and many thanks from Team Bracy.
kobe and the grands
Kobe 6-09
Kobe and Grandma
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Posted by Jessica Bracy | Comments: (7) | Permalink
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HAPPY MOTHER'S DAY!
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May 10, 2009 08:32am (EST)
On this day I look at Kobe and think how close I came to not getting to celebrate Mother's Day. I feel so blessed to be a Mom...lucky...very lucky.
I never get tired of being called Mom, don't mind being tapped on the shoulder in the middle of the night...every night. I have adjusted to our normal and am learning to embrace it rather then fight it.
This day is another reminder that there should be 2 voices calling me, two sets of little hands tapping me on the shoulder each night.
Today I will celebrate being the mother of 2 amazing boys and the Maja to one fabulous young lady.
Happy Mother's Day, I am honored to be among you all.
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Posted by Jessica Bracy | Comments: (4) | Permalink
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JUST KEEP SWIMMING!
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Apr 02, 2009 09:38am (EST)
Just jumping in to say hello and update on my superhero! I have been checking in regularly just not updating my blog.
We are good, almost through Kendra's competition season which will free up some time...gearing up for the March for Babies...getting ready for Kobe to become black belt recommended...he also started baseball, Daddy and one of his nurses are the assistant coaches, I am not sure who is more excited, Daddy or Kobe!
We just spent a few days in the hospital, Kobe had an outpatient procedure Friday and spiked a high fever after we got home. We were there for 5 days. He is doing much better, some tummy pain but that hasn't stopped him.
He had another MRI while we were at the hospital to check the nerves around his spine, haven't heard anyting yet. They changed the cocktail we use to flush him...we will see how that works out...and told us that they do not want him going to a regular dentist due to possible infection issues, he needs to see a special care dentist taht will see him in the hospital under sedation. We had talked about this before, but I thought we may be able to avoid it. How many times can one little guy be put under? We will try to incoroporate his next colonoscopy with the dental appointment to kill 2 birds with one stone.
Our Family Team Reception is tonight, it is at Funderland a great litte amusement park that hs a few rides and games...it is perfect!
Kobe watched Nemo in the hospital, my new mantra has become, Just Keep Swimming!!
Hugs and much love.
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Posted by Jessica Bracy | Comments: (4) | Permalink
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HOME
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Feb 23, 2009 10:22pm (EST)
We're home. I am still processing the day. I really liked Dr. Cox and I believe that with him on Kobe's team things can only get better. He agreed to work with Kobe's team and stay connected to Kobe until we get answers and results.
We spent about an hour going through Kobe's case, his first words after we finished Kobe's history was, "This is a very complex case." Great. He has some questions that need to be answered before we can go much further. It is important to go back through Kobe's x-rays and see where the impaction begins...before or after the cecostomy. We also need to go back over his MRI and look at the nerves around his spine. There are diseases that need to be ruled out, new ones that I have not heard of before and a few that I have.
So no real answers, but progress. We are going to adjust Kobe's flushing "cocktail" in an effort to get him more comfortable, we are going to continue touch therapy and increase the mineral oils and probiotics...can't hurt! We will see what comes of all of this and keep moving forward.
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Posted by Jessica Bracy | Comments: (5) | Permalink
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OFF TO STANFORD
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Feb 22, 2009 11:05pm (EST)
I don't know why I am such a wreck about this, deep down I don't expect any answers tomorrow...but I am. Part of me is scared to get any answers and the other is scared that we won't. We have been in this waiting game for so long.
So tomorrow we drive to Stanford with both grandmas and one grandpa. Tonight Kobe is in so much pain he can't stand up. He is propped up playing the wii and eating apples. Whenever he doesn't feel well he starts asking for fruit and veggies...and lots of water, cuz that is what mommy always tells him will help his tummy.
We have flushed and rested and still no relief...not exactly the first impression we want to make on this new doctor.
We are seeing one of the leading specialists in pediatric GI...our doctor's mentor. We are hoping for answers, for ideas and solutions. We are hoping for a way to give Kobe more then just a few days of relief at a time so he can be 7 and do what 7 year olds do. That's the hope.
I will let you know how it goes. Much love.
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Posted by Jessica Bracy | Comments: (5) | Permalink
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