Cam saw his retinologist today- the man who saved his vision when he was just days from being completely blind. Dr Kaiser sees him only once a year now (he sees several other eye specialists much more often). For being such a practical and seemingly stoic person the sight of Cameron brings him close to tears every time. I can tell how proud and relieved he is to see how functional Cameron's vision is when there was a very good probability of much much worse of a visual outcome. He just blows him away every time. Other than needing 3 grown adults to restrain my kid and pry his eyelids open it's a nice "perspective moment" to step back and be reminded of how far we have come an show lucky we are.

Ran into the neighbors and boys best buds going to see the lights at Feeneys. They're all too cute together.



We transitioned his head garments to underpants from pull ups as well- potty training SUCKS


Gaga's new pup and Cam's new best bud "Cutie"



Boys are showing that potty who's boss! I don't know about one of these infamous "3 day potty trainings" but it seems as if there is more pee pee getting in the potty and less of it on my floors every day.

Brody's next big airway clinic appointment is Monday so we're anxious to hear the newest plan to get this damn trach out. Voicing is coming along very very slowly. Still just sounds. Every time we work together on it my heart breaks that he can barely project sounds but I have to be patient with this just as we have been with everything else and trust that it will come around.


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Another one bites the dust

So after Brett and I were both terribly sick, now Cameron has pink eye and congestion! Brody is a pillar of good health thank g-d!

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Where in the world has Melissa been??

To be completely honest my commitment to the blog is not what it used to be. I think that's a good thing though. I started this as a way to keep everyone in the loop when it was just too hard to talk about the horrific experiences our family was going through. I hoped to keep it going through all of the good as well but with being so busy living it, sitting down and using my brain to write these simple notes has sadly become tiring. So by no means am I stopping the blog- I repeat, the blog must go on! However, I am officially slowing it down.

The last few weeks have been big time sucko for Brett and I. Being a hospital transient family has finally caught up with us and we (Brody) brought home MRSA. Brett had a very large basses removed from his stomach and a few weeks later I had one also. They literally cut a huge deep hole and leave it open. It was sooo painful and just a nightmare logistically with caring for the kids. We are both on antibiotics with crazy side effects. Once those finally healed we both got very very sick Sunday. It was so bad I went to the hospital yesterday to make sure it wasn't MRSA related elsewhere in the body other than the skin. It's not! Thank g-d! But today shingles popped up on my arms! Being sick and stressed for so long brought my old enemy back!!

So I think it's probably a little easier to understand now why updates have been few and far between and why we still are not doing all of the normal get togetherness and things we expected to be doing by the time the kids were 3!!! Wow what a rough few years it has been...
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Halloweenie

Biker dudes















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Lil pumpkins

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Birthday pics

The cousins





Blowing out the candles


Love this family pic


Their Lego construction cake


Looking cute



Brody's favorite hat these days


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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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Joann Fabric Mantra

So I just had a really long, maybe too honest and pretty heartfelt entry written and then my stupid phone cleared the screen. So... As I was in the middle of explaining my overwhelming, indescribable physical and emotional exhaustion... I'm going to keep this one short because I just don't have it in me to go to that place in my heart again.

Here's the cliffs notes- Brody going back in to OR Wednesday. Things still look good but there is something they want To keep a close eye on.

Kids are adorable and beautiful and funny and smart but also give us a run for our money-figuratively and literally! It's been a long 3 years of this hospital/therapy/people in our home bullshit and were ready to break... Or we already broke... Or we're picking the pieces up... Or trying to keep them together.... Basically, Brett and I have done so much suppressing of some pretty traumatic, almost losing your children more times than we can count kind of shit that I think it has come back to bite us in the ass. All of that tucking away of emotions to save our strength for our kids and fighting every minute for them taken a toll now that it all seems to be slowing down. Example: tonight when putting Cameron to bed/ laying with him I had a flashback of when I was concentrating on holding the boys in and trying so hard not to cry because it would bring contractions on... I just laid with him in front of me and cried imagining when I felt them moving and kicking to get out. These kinds of thoughts just pop up again out of the clear blue. PTSD at its finest I guess...

Everyone always tells us how amazing we are and how they don't know how we do it.... Well we have to do it. It's our children- there's no choice when it comes to our children. We have completely sacrificed the people we were, the lifestyle we lived, my career which was a huge part of my identity and self esteem, everything. I have given it all and wouldn't do it any differently but I know I'm not the same person and probably never will be again. I wish I could just slip those rose colored glasses back on but my world is forever changed and I hope that there is a day that we are the Brett and Melissa that you all knew before this but I don't see those people when I look at us anymore. Ok... Over honesty done for now because I've gotten a little too deep and the tears are flowing and that's about all I can face for tonight.

So I'll leave it at this. Our jobs as parents of children with these types challenges is a very different and anxiety ridden struggle than most. As I write this Brett is in the basement throwing up from yet another migraine. I look in the mirror and see someone else... I somehow have always pulled it together for functions but today I see a pale, older, worn girl that I dont recognize. This experience has aged us and changed us to the core. When you're fighting so hard for so long I guess that fight eventually becomes an attitude and a way of life and not in a good way any more.

I hope to find those energetic, fun cute, happy people I see in the few pictures I've had time to put up in the house we barely moved in to 3 years ago. One of these days they'll come out of hiding.

So today's title: I saw a cheesy wooden sign at Joann Fabric and I liked it because it's easy, unpretentious, and seems to solve my over analytical mind racing. So my new mantra "Live Simply, Remain Grateful"

Another round

Back in tomorrow for another look at his trachea to see how it's healing. We're exhausted!




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Big Boy Bed

When Brody came home we surprised him with his big boy bed!

10 minutes later...



Hahaha!

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Destination HOME

Brody just passed his feeding evaluation and is approved to drink and eat! He is already making sounds and seems to be tasting differently ( he is licking things of the side of his mouth-he never did this before... Guess its "yummy" and not "just because mommy says to eat").

Best best birthday present for Brett ever. New airway healing beautifully and back to the grind on feeding and speech therapy with all his new parts in place.

Back in 3.5 weeks to take another look and we have to keep a close eye on these things as the swelling from surgery will continue to go down and his airway will get bigger and bigger. Fantastic news for breathing but also challenging adjustment for feeding.

Home we go!


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A Happy Birthday Indeed!

Brody's trachea looks great- exactly what they hoped for. The stent is out and now we come back in 2-3 weeks for another bronch to take another look at how it's healing. We couldn't have asked for better news!

Happy birthday at CHOP Daddy!



Cake at home last night


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Where's my bro???

Hmmmm


It took a lot of convincing but ICU let us take Brody home until his next surgery on Friday. Nursing is arranged for all overnights because as long as the current stent is sutured in above his trach (to aid in healing of the new graft) he has a very critical airway-meaning that if his trach fell out he would not be able to breathe at all. I'm so happy to have him home but it is definitely a hand full.

Cameron has been staying with his grandmothers since Tuesday and probably will be passed around again this week. It's so hard to not see him but brody needs me more right now. Brody was actually crying a lot last night. I think this is all very confusing and he's much more content at home but doesn't understand where his brother is. Believe it or not I think this has all been more emotionally taxing on Brody than physically. He recovered from surgery really nicely but was traumatized by the hospital stay and now all of the changes since. Hes not allowed to eat by mouth this week until his stent comes out so I'm sure thats not helping either.

Regardless of how challenging the setup is, being home definitely beats the hospital!

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REFUSE DEFEAT

Snoozer


We laid like this for 4 hours yesterday snuggling with no tv and no toys



Potato head needs a suctioning too!

Living the life


REFUSE DEFEAT!


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Most patient child alive

Brody has been a snuggle bug all day and has been adequately amused with games and movies. He is so patient ( I have no idea where he gets that from?!) I got sad when I let Cameron hear me on speakerphone while he was at my moms and he lost it. We will be in the hospital at least until next Saturday after another Visit to the OR Friday and I don't know if I'll get the opportunity to go home to see cam before then. I feel so guilty when I have to put one of their lives on hold for the other but he's getting sleepover time at Ga Gas and mom moms so he's ok.
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More comfy but more irritated too

Brody was much more comfortable today from a pain perspective but was just all around annoyed. His 2 IVs infiltrated so his arms blew up twice their size and then he had to be restrained by 4 grown adults to get another one in his foot. He is just so irritated (and so am I) by the constant poking and prodding, vitals, meds, treatments, checkups, etc.

I feel like as soon as I start my victory dance I'm immediately slapped back into reality with a remainder of what a painstaking process this is with many twists and turns. Brody has never had a problem with food being an aspiration risk but when he was suctioned tonight we found chocolate milk in his trachea. I was devastated and lost it. He hasn't used his gtube in over a year and now we have to feed him through it in attempts to keep his airway safe from infection. I'm praying this is only due to things feeling different in there because of the stent in place (which is what his surgeon thinks) but we knew that there would be risks and setbacks that came along with such a huge step forward. Recreating a whole new airway poses a lot of problems for feeding and this is an obstacle we may face. I need to keep it in perspective but it's just so hard for me to take steps backwards.

Goal of the next 3 months of healing is to keep that airway clean, germ free and guide the scarring in the right direction so that it will hopefully have minimal impact ojibwa vocal chords for speech and swallowing.

Thank you for celebrating this surgery with us but please remember how important the many many more steps that lie ahead of us are.

I can't look too far into the future. Today is all that I can worry about right now.


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Pain, pain go away!

Poor kid is in soooo much pain! They are trying to be conservative with morphine as it depresses the respiratory system but he just had his throat ripped apart and put back together with his ribs... Pump up the meds!

It's going to be a rough night here.


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Let the healing begin

Brody is out of surgery after 5.5 hours. Everything went great but they has to remove more scar banding posteriorly in his larynx than they thought so they will be keeping him longer than expected. He has a stent in his upper airway above the trach that he will go back under anesthesia next Friday to he removed. After that is cleared he will be able to go home and continue the healing process. He will come back every week or two in the OR for a while to monitor how the new tissue is healing/integrating. It's going to be a looong 10 days!!!


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OR update

Brody went back at 8:30. They bronched him first- put a camera down to make sure the tissue was still inflammation free and thy he could be operated on today. We recently got the update that he good to proceed with the reconstruction! They are mid airway dissection of the throat now. They will next move to opening at the ribs and harvesting cartilage.


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Today's the day

Brody just went back to the OR. He will be in for 5+ hours. Poor baby. We're of course excited, thrilled but nerve wrecked. Didn't sleep at all last night... Just waiting now...

All drugged up wearing his blankey (crinkly) as a hat right before



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Ants in the pants

So the big day is tomorrow. 6:30a arrival time so we'll be on our way at 5:30a. I'm so anxious I can't sit still. The house is spotless, everything is packed and prepared, and I am looking for something to do with all of this energy! I have a feeling it's going to be an all nighter with these nerves.

Here's hoping for all the best tomorrow. This kid deserves it!




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Life changing

In one week from today Brody's life will change forever.

Thug life.



Visiting cows in PJs


Training to be a shot girl


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