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WELCOME, GUEST |
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(1 member)
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niylnnrae @a…6 |
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MIRACLES DO EXIST...BRODY'S PROOF
AbbyAndBoys |
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| Category: Home | Sun | Mon | Tue | Wed | Thu | Fri | Sat | | | | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 | 11 | 12 | 13 | 14 | 15 | 16 | 17 | 18 | 19 | 20 | | 22 | 23 | 24 | 25 | 26 | 27 | 28 | 29 | 30 | 31 |
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WE'VE HIT A RECORD!
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May 16, 2012 05:22pm (EST)
We've been home for 24 days!!! That smashed our old record of 11 days!!!
Now for the not so good news. Brody Bear is still having a lot of feeding intolerances, and it's putting a big strain on his body as well as his weight. Doctors have come up with one last option to attempt pain management and get him gaining weight; we started administering Gabapentin. It's typically a medicine used for seizures; however, it numbs the portion of the brain responsible for sending signals and stimulation to the GI track. So they're hoping this will control pain management by kind of numbing him, and then stopping signals to the GI track they're hoping will result in his stomach not receiving the stimulation to puke allowing his small intestines enough time to absorb a good portion of nutrition before we decompress his stomach. Of course there’s side effects, but we’ll give anything a shot before we move to more tubes and machines. This is a shot in the dark, but it's the last option we have before we move to a neck catheter and TPN/Lipids therapy. The magic number is 9; once we hit 9 (as long as things are stabilized), then surgeons and anesthesiologist will ok surgery to remove the tumors and complete the muscle biopsy in the leg.
On that note, doctors are as of now treating Brody under the assumption we are dealing with Mitochandrial Disease until they can get a confirmation with the muscle biopsy. With that being said, plans for reconstruct any portion of the GI track are now off the table. They will proceed as the GI track being a lost cause and write it off, and begin taking preventative treatments to prolong the disease from attacking any other organs or systems. Unfortunately, in the past week he's had swollen lymph nodes, and the corner of his eyes have began to take a purple tint and the area is growing; all of which doctors indicate the mitochandrial may be impacting his vision and the nervous system. His g-tube had a rancid infection and the skin around it had to be burnt off and medication cream placed throughout the day to attempt to help it heal and form new good skin. Again not the best news, it looks as though the infection has grown back with the new skin, we see the surgical team tomorrow and they're afraid his body may just be rejecting the tube and fighting it from healing because it recognizes it as a foreign object.
We're not quite on board with accepting the Mitochandrial diagnosis until we get a definitive confirmation with the muscle biopsy. That being said, we are being realistic as new things arise it is pointing more so evident that it probably is it, but we haven't lost hope. In fact we found an organization called "Henry's Hope", and we've been in contact with the founders of the organization who are the parents of this amazing miracle Henry. To read Henry’s story you would think it was as if you were reading Brody's biography, it's unhanding the similarities. Henry has some challenges, but nonetheless, he is a happy, loving and living boy who has shed light to our path and renewed our optimism.
We ask that you just continue to pray that Brody stays in this fight, and that we continue to make the best decisions for him in his treatment.
allsmiles
brothers
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Posted by AbbyAndBoys | Comments: (1) | Permalink
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FINDING THE BEAUTY IN IT ALL
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May 11, 2012 03:54pm (EST)
This journey isn't getting any easier, but we have amazing friends, family and even complete strangers we've never met are praying for our miracle. We've been caught in this whirlwind that has yet to calm, but we're managing. Doctor's are discussing the next surgery to remove the tumors in the small intestine, remove the damaged portions of the large intestine and adhere to a muscle biopsy to confirm the suspected mitochandrial disease.
Unfortunately, we're at a crossroads. If it is infact mitochandrial, then the journey is over and we will begin to think about long term resolutions in the form of a neck catheter, TPN & Lipids therapy with an ollostomy bag, and treatments in California, and then just pray that his body can continue to fight, thrive and attempt to prevent the disease from shutting down any other systems. If it isn't mitochandrial (doctors are fairly convinced it is, but they've been wrong before), then we will proceed with the next round of surgeries in Ohio to begin exploring the motility issues.
At one point in time we had the mind set of "please Lord let him live not being dependent of any tubes or machines", and now we've moved to the mind set of "please Lord we'll take the tubes and machines just let him stay with us". We don't care what the recovery process looks like, we will accept it, we will live, love and be thankful.
With mounting medical bills and now the very realistic prospect of surgeries out of state, our family and friends have decided to hold a Spaghetti Benefit Dinner with all proceeds going to Brody's existing costs. My husband and I know we cannot carry all of our burdens on our own, we know Heavenly Father can and will. The overwhelming love, support and prayer has given us hope, faith and fortitude even when facing minimal odds. We can't begin to give thanks for all we have.
BrodyPlayBoy
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Posted by AbbyAndBoys | Comments: (2) | Permalink
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ASKING FOR PRAYERS
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Apr 18, 2012 06:40pm (EST)
God will not forsake us!
Brody's finally home, but we still have a long road ahead of us. Unfortunately, the tumors along with a few other abnormalities that doctors have found is now leading us to the conclusion that we aren't just dealing with damage from the NEC infection. It seems as though Brody has an underlying motility issue and looks as though he may have a mitochandrial disease. Genetics is doing tests now to determine if a metabolic issue is involved, if so treatment will be saught at a university in San Diego. If Genetics preliminary tests are normal, then GI will begin the referral process for motility evaluation; the only three hospitals in the US that have motility evaluations are in Ohio, Texas, and California. At this point we don't care where we have to go, we will go! God never said this journey would be easy, he just promised it'd be worth it. As long as Brody has fight left in him, we will follow his lead and go where ever we have to.
Easter
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Posted by AbbyAndBoys | Comments: (3) | Permalink
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MEET BRODY BEAR!
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Mar 29, 2012 05:46am (EST)
Miracles Do Exist
Our miracle arrived on December 2nd, 2011, after a 6 week hospital stay in an attempt to prolong his arrival. At 31 weeks 4 days Brody made his mark, and changed our lives. You could only imagine the excitement my husband and I felt when we heard nurses say "6 pounds 3 ounces". I think in that moment my heart stopped and I gave thanks to the Lord for granting this miracle. Daddy was able to see him for just a few moments before nurses rushed him to the NICU. December 3rd was a blur, I was still under some heavy medications and hadn't quite stabilized and was in ICU and hadn't been able to visit the NICU. December 4th, at 2AM we had a team of doctors in our room waking my husband and I up. Concern for Brody's weight was an issue and over the past few hours the swelling in his abdomen grew extensive. That morning Brody began passing blood in his diaper. His first diaper weighed 1KG and was full of fresh blood. This continued for the remainder of December 4th. By 8PM that night a blood transfusion has been administered and Chaplin's were in our private NICU room offering prayer. Doctor's finally confirmed Brody had Necrotizing Enterocolitis. Doctor's began to explain how devistating this type of infection is, ultimately they told us if Brody could make it to the 7th day of medical treatment of the infection survival rate more than doubles. Well, here we are we made it!
It's been a long journey, but end of January Brody had underwent 4 surgeries for obstructions related to the NEC infection damage, biopsys of rectum, colon and large intestines, removal of damaged sections of the large intestine, pyloric stenosis, and multiple biopsies for Hirschsprungs Disease and hands full of other suspected issues.
BrodyBorn4
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Posted by AbbyAndBoys | Comments: (3) | Permalink
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