Saturday, April 23, 2011

Brody's new theme song. Excuse all of the pictures of Kenny Chesney in cutoff shirts and listen to the words...



Brody looking at Daddy right before he went to surgery.

I'm not going to write too much about what the last few days have been like as words can not begin to express the agony I have felt. Brody is doing as well as can be expected and so far the doctors are pleased with the results. The experience of watching my beautiful son go through such a horrible surgery is gut wrenching. I could not imagine any deeper hurt than watching him with a hole in his throat. He is so smart, so handsome, so strong and I am so sad for what the first 7 months of his life have been. I would do anything to take the pain the boys have been through away. It is not fair what torture my innocent babies have been through. We will get through this too.



Friday, April 22, 2011

Brody the day before surgery

                                                     Chillin watching a movie

                                              Who is that kid in the mirror??
                                            oh... that's me!!!
                                                       Sleeping on Mommy




Wednesday, April 20, 2011

Brody will finally get the relief that he has needed

Brody has been at St Chris since Monday evening when I made the decision that he can not keep working as hard as he is. Every time he cried he turned blue. His oxygen requirement increased and his feedings were a nightmare. The boy who loved to eat by bottle was now in terrible pain when fed both by mouth or through his gtube. We fumbled around trying to change formulas to reduce gas but finally after having an xray taken at a different angle, it was discovered that he has large intestine in his chest wall. After working so hard to breathe past his airway obstruction for so long he actually sucked bowel up under his ribcage pushing on the lungs and making it impossible to eat. He is at the right place now. Our docs at St Chris have finally given us answers to Brody's chronic problems and the relief that he needs is finally happening. He will have surgery Friday to reduce the hernia and to have a trach placed. We were so scared of this for so long but it is what he truly has needed for a long time now. I pray that no other issues have been caused by such prolonged high CO2 levels as we have learned that babies with chronic lung disease like Brody will have elevated levels, but having this condition past 3 months of age can be detrimental to the brain and strain on the heart. We are scared that maybe surgical intervention should have happened sooner for him.

I used to snicker at the 'mom blogs' of mothers talking about what a relief it was for their kid to have a trach and g-tube. I thought to myself, how could looking at your beautiful baby with a hole in his throat every day be a relief??? I now know what all of those moms were talking about. Brody will be able to breathe easy for the first time in his life. He will hopefully be entirely off oxygen and off of the monitors. He will feel better, have more energy, gain weight easier and be able to leave the confines of a 7 foot space. He will be able to go to the park, the beach, or even just get to his doctor's appointments with ease. I will be able to carry him in his Baby Bjorn and take him from room to room in my house like a normal baby. Sure, there will be a lot to learn in terms of caring for his new bionic throat but we and his doctors strongly believe that this baby will immediately thrive and grow and develop the way he should and the hope is to have all of this junk out in a year.

Of course I have fears of social situations, public places, people looking at him, etc. I saw a little girl in our pediatricians office with one. She was 1 year old and having hers closed up. She was adorable, bubbly, developing normally and most importantly happy. When I think about Chloe it makes me smile because she proved all of my misconceptions about trachs wrong. Brody will be that kid too. That gorgeous child that brings light to everyone he meets. Our little Mr. Smarty Pants will continue to observe and learn without limits. The trach may be difficult in the short term but it is his opportunity to live, play with his brother, go to school, make me a nervous wreck when I hand over the car keys at 16 and tell his mom to stop kissing him when I'm about to drop him off at Penn State (sorry Brett...or Miami).

Please don't be scared for us or of him. This is a good thing for Brody and for our family.

Interesting trach factoid: Catherine Zeta Jones had a trach as a kid for a respiratory infection. Often wears a necklace to cover her scar.

Monday, April 11, 2011

You may think you know, but you have no idea.

When we started this journey we didn't know what would come of the boys... would they both make it? Would they have neurologic issues? Would Cameron be able to see, to go to mainstream school, to drive? Would Brody be trach'ed, have a voice, be able to eat by mouth? Not to mention what judgements society, other kids and ignorant onlookers would make. We have had so many complications along the way. We knew that the time in the NICU would be tortuous, but the day we brought them home would be a relief and the rest would hopefully be maintenance and minor tweaks through therapies and procedures. What I never expected is the "tight rope" we are still walking with Brody. His condition is still very guarded. He is a complex kid with a lot of systems in play-one thing goes wrong and a domino effect occurs. Careful communication and diagnosis are imperative for his well-being and development, however this is where his practioners are lacking. We have had pediatricians take him on as a patient who are soooooooo out of their league and completely throw his fragile balance out of whack. I have begged, pleaded and screamed at pediatricians, specialists, receptionists, and the medical supply company. No matter how sick your kid is, the healthcare industry is still a business. Interesting to be on the other side of things now. We have felt incredibly lost, unprepared and alone in all of this. Outside of the NICU it has been near impossible to get the ear of the right people who can help us help Brody.

There are those who believe in reflux and those who call it a myth... like the Lochness or Big Foot...but I don't see the big mystery. I have had 2 kids with serious cases of it and fortunately Cameron was able to escape it's wrath without other complications. Brody has had surgery to correct it, now has a hole in his stomach as a parting gift, had his throat lasered twice and now... has reflux again. Doctors talk about it ambiguously. When I say the word reflux it is quickly followed with the term "alleged" as OJ "allegedly" killed Nicole. What is so inconspicuous about milk in his mouth an hour after a feeding, screaming (for a kid with no voice) like you've never seen, arching, hiccups and coughing??? After the repair that Brody had these things should NOT be happening. The problem with my kid having it is that he has an airway opening the size of a coffee stirrer that is exacerbated when stomach acid comes in contact. Hence, the domino effect. Any changes (environmental, food adjustments for weight, med adjustments for weight, extra gas, venting or not venting his belly) cause changes to all systems involved-pulmonary, gastrointestinal, larynx-vocal chord-airway. Meds to help one ailment in turn cause more severe problems with another. We never get ahead and have no one to coordinate. As on top of things as I am, I am feeling helpless.

Finally our nurse recommended some input. Thanks to her I have ditched the incompetent pediatrician I entrusted with my son's life with and we are seeing a group for special needs and chronic kids down at St. Chris. Brody needs a feeding team with nutiritionist, GI highly involved in his care, and much more attention paid to his paralyzed vocal chord. As much as we have liked our specialists up to this point as people, it's time to pull out the big guns and get him to an airway/voice center and have food in/out monitored much more closely by the right people. We are very excited for 2:30 today to come. I have been counting down the minutes since early last week when I was at a loss for what to do and almost had him re-admitted to St Chris's just to get someone to look in our direction.

Our family is all in this together but I am the one who knows Brody inside and out. I know his cues, his cries, his meds, proper positioning, oxygen levels... as Brett says I am CEO of the babies. Brody's condition leaves a lot on my shoulders. If I were to get sick my mom would step in but it would be very challenging. I get no breaks and haven't left the house since he got home for more than a doctors appointment and seeing the light of day is not in the cards in the near future. I am honored to be his mommy, his caregiver, his nurse and his life line.

Of course the pictures we post are of the good times. There are no cameras rolling when Brody is hysterical in pain to the point of working himself up to a level that you think may put him over the edge. There's no one to document the fear that we live with thinking his oxygen equipment could malfunction... again! No one sees the desperation I feel when there's just nothing I can do to console him when everything is going array. We have plenty of good times with Brody and they are glimmers of what life will be like when his doctors finally figure him out, but a day in the life at the Collins house...you may think you know, but you truly have no idea.

Friday, April 8, 2011

No time for updates. Lots going on, some great, some incredibly  challenging. Will fill you all in another time.

Space is cool

                                                Brody and his bear

                                                      Hi Sheeeeeeep

                                         How you doin????

                                      I try to make them sleep together. Cam's not a fan.
                                 Stop looking at me sheep!
Brett's diaper change last night... no joke.

                                                Lip lock
                                            Man I am good looking.