Airway update

I haven't updated because frankly I've been pissed. I have a lot of anger. Don't know where to direct it or who exactly is the source but what I do know is that my kid is the one paying the price. My advice to my friends in healthcare: please remember that it may just be a job to you but the patients, especially pediatric, are someone's baby' and there is no prioritizing when it comes to a child's health-every little detail is important. To my physician friends: I know many of you are clinical thinkers and excellent surgeons but one thing that can't be taught is bedside manner. Please tell your patients the honest, conservative, REALISTIC answers. Though some may look to you for all of the answers I am not that naive. I know that every case is different. I'm just looking for a ballpark-an educated guess that would help me to plan and prepare my family for the aftermath of the next big change.

When we left the NICU we were told "he will not be trached, he just needs to get bigger". When we saw our first pulmonologist we were told "he should be trached-prepare yourselves-when he gets the slightest sickness it will happen". When he got trached we were told "it's only for a year and he will be on room air". Once he became ventilator dependent we were told it would be just a short time. When we transferred him to CHOP we were told he would need major airway reconstruction for the first time. And finally after the recon here we are with today's biggest frustration... Being told that the Trach would be out close to Thanksgiving and then yesterday being told the spring. I just can't take it anymore. We have been so patient and worked so hard to get to this place and while it might be the right choice clinically I am irritated that once again I have been mislead, gotten my hopes up, prepared emotionally, prepared my family and my household an ultimately been let down again.

I was told by a speech therapist about Brody's very raspy and poor quality of voice but were lucky he has something... Hmmm... When it comes to the quality of the rest of your child's life and the first 3 years of it have already been tarnished beyond what most can imagine, I'm really not a fan of hearing that voice is secondary.


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Why I am so behind

We have had a MRSA outbreak in our house- it just never ends. Brody and Brett are both on antibiotics for it. Poor Brett had a huge piece of his abdomen cut out as a result as well and has been in a lot of pain and in bed since.

Cam and I have just had your run of the mill virus but I have has a really hard time shaking it as I hve been pretty stressed, sleep deprived and I would assume immune suppressed taking care of everyone else.

Yet again the grandmothers have been practically living here to help get us through the day.

I think tomorrow will be a better day!

I will update more on boys birthday after I am done bleaching every toy and surface in my house


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All grown up

The boys turned 3 yesterday and I sware they woke up more mature today! Don't get me wrong we has the typical temper tantrums and food throwing but they are real little people. Cam and I have real conversations and he is saying hysterical new things every day. Both kids like to fake injuries to get me to give them kisses and then play off each other. They are tackling and beating each other up and running around chasing one another laughing hysterically. They love to jump on Brody's bed together- of course until someone gets hurt but nonetheless they are interacting and loving each other like they hadn't in the past.

As you all know feeding issues have and will continue to be a problem but we have come sooo far! Cam climbs up to his chair by himself now willingly while it used to be a screaming protest in the past. He had not let anything in his mouth other than a bottle and formula in his mouth since he was 8 months old. He is now eating yogurt, stage 2s and pudding very happily. Today we finally allowed a training cup near his mouth and drank a good quantity from it for the first time ever. How amazing it will be to get rid of that damn bottle!!!

I parked too close to Brett's car and his interpretation of my comment was "mommy hit daddy" and has been saying it since. That combined with "damn balloon" made for a proud parenting day.

Brody loves his new tricycle he got for his birthday and both kids love their princess Sofia castle... Its healthy for boys to play with ALL toys! Hey kids like what they like and I think it's healthy to explore what makes them happy. They like doing pretend play in the different rooms of the castle.

Potty is a big part of our conversations and we sit on it plenty but not making a ton of progress there yet. They will when they're ready... It's not super high on my priority list... It will happen.

2 more weeks until Brody gets capped and then the week after Cam has hernia surgery. We start with all new therapists next week since they graduated out of Early Intervention and into the Intermediate Unit from 3-5. Excited to have a fresh outlook with new eyes and advice.


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Cam Hernia

Just came back from urologist and Cam needs surgery.... Ahhhhhh!!!!

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A Happy New Year it will be!

Brody just had another bronch and his trachea is completely healed from his reconstruction and looks beautiful! Brody has an airway! If he weren't sick right now he would be getting his trach downsized and capped as a trial for removing it. Unfortunately he has bronchitis, so we have to wait until he is in better health to get that process started but we are on our way!

Oct 14 is our appt to move to the next steps. Pending he stays healthy the trach could be out a month later!
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Morris Arboretum

This past weekend GaGa and mommy took the boys to the train exhibit. Fun was had by all and a few cute pics



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Back in the game

Brody went into OR again today with the condition of possibly needing to do a little tweaking based on his last bronch. We have been having such a crappy few weeks that I really couldn't handle much less that great news today- and we got what I was hoping for! Everything looks awesome (after a lot of work to keep him healthy and a lot of antibiotics!) He will go back in one month and if all is still good they will start to trial capping his trach off (forcing air through his nose and mouth and closing the trach for trial periods) and beginning the process of decannulation ( eventually getting the trach out!)

We are thrilled and really needed a boost ; ) way to go Brody!


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