Frustrated with the system…😫

As you all know, my son Brenden is not even 5 months old and has a rare disease which causes him to need a tracheostomy and be ventilator dependent. Yesterday, to go to 2 doctors in the city a block apart, I had to call paramedics to take us because city traffic/parking is atrocious and it’s hard for Brenden to do too much traveling. (Which, I am adding—is NOT covered by my insurance and I will need to appeal when the claim is denied). So he was placed on a stretcher in his car seat, taken by ambulence to one doc (hour trip)…then we walked in the street 2 city blocks with the 2 paramedics, my husband, the nurse and myself to the second…waited in a waiting room with him on a stretcher while everyone stared until the doc realized the secretary was making us wait and brought us in….then we went home by ambulance. The paramedics were awesome (shout out to the Jules crew from  Midwood!) & were able to stay with us (but usually cant & you have to wait to call them to come back). It was A LOT EXTRA to go through too …even the paramedics agreed that we could probably do it easier if we had handicap parking permits and just a nurse with us in the future. I had some permit papers filled out by a doctor for him and decided to call to make sure I’m filling everything out properly.

So, I call DOT & find out that in order to get a handicap parking pass to use in NYC when Brenden is in the car (NY State rules are different that NYC for parking passes)…I need to take him to the DMV to get a non drivers license ID. When I tried to explain our situation on the phone to DOT…the representative (Leroy) was nasty as hell to me, saying if Brenden can’t sit and wait at the dmv like everyone else then he doesn’t really need a parking permit. I tried explaining how we need to take him to appointments and such and it’s difficult with a ventilator to park far…plus at the DMV we might wait forever & I don’t need strangers breathing on him. Is there anyway I can prove identity with birth certificate or SS card? He snipped at me “How are you going to take him to the doctor if you can’t take him to the DMV? The pass is to give him mobility and if you can’t take him to the DMV, obviously he doesn’t really need the parking pass at all”. Wtf?! I tried explaining that if I have handicap parking, I can take him in my car with a nurse because we could park in front of doctor’s offices, or anywhere we go. He said there is no way around it, he needs to go to DMV for a ID like everyone else. I asked for his supervisor and was disconnected. I called back and spoke to Leroy AGAIN and asked again for a supervisor. I got a nicer supervisor, Tamika, who wasn’t rude, but told me to call the DMV to see if they can make special accommodations or call 311 to see if he can get a NYC ID. I called 311…he’s too young for a NYC ID. You need to be at least 10 years old.

Then I called the DMV and they were shocked and said this was the craziest thing they ever heard…and that they would try their best to accommodate us if we make a reservation…that if we go by ambulence, we can wait in the ambulance until they are ready for us, to avoid germs and stuff.

So now I need to call an ambulance and make a reservation to take Brenden on a stretcher into the DMV, to get a picture for an ID on a day I will have to miss work.

This comes after spending at least 10 hours on the phone trying to get his Medicaid corrected to say that I ACTUALLY HAVE INSURANCE AND DON’T NEED A MEDICAID CHOICE PLAN…for some reason, this was impossible to do and screwed up some of our equipment deliveries because Medicaid somehow was overriding my insurance. I FINALLY fixed that today. Besides the fact that I had to make a bunch of other calls to the hospital for denied medical claims from his NICU care  because of this, as well. 

Additionally, I’m still trying to get full nursing coverage so we can go back to work…although I went into work 2x this week already for a few hours to set up/& go to a meeting….& we’re also planning his Early Intervention meeting… 

Not one thing is easy for us! Everything is so ass backwards!!! 🤬 Am I wrong to be so frustrated?!

Home! 🏠

On 8/13/18, we finally got our baby boy home!

Some updates:

Nursing: Since the first night we were home, we’ve had spotty nursing coverage. Brenden is entitled to 24/7 coverage but the agency is having trouble filling up all 12 hour shifts. So, there have been many sleepless nights for us here (mostly Mommy), as we stay awake to keep an eye on him. The nurses we have received so far, however, have been pretty great! We do get Lynn (our NICU mentor and Brenden’s favorite nurse!) so that’s amazing…as well as a few other great ladies we’ve been able to meet in the past 11 days! We’re hoping that the schedule will get better for September so that both of us can return to work (school starts soon and I need to set up my classroom next week!!!)!

Supplies: There were MANY issues with getting supplies to our home. If it wasn’t for Facebook support groups, Brenden would not have eaten since last Friday, as the enteral feeding company STILL has not sent us feeding bags/farrell bags. Plus our brand new Infinity pump is acting wonky, so I’m waiting for a new one. The DME that supplies ventilator/trach supplies has been pretty great, although there were a few small hiccups along the way with that as well.

Early intervention: Brenden has been evaluated for PT, OT and feeding/speech/language. We met with a Special a education teacher today (Which was fun being that that’s my job too lol)…so this seems to be going well.

Medicaid: This is the most assbackwards system. We have our own insurance, and because Medicaid is screwy…they keep blocking coverage of things that MY INSURANCE WILL COVER because they say I don’t have coverage (which makes no sense)…because each service supplier for some reason has to go through Medicaid first even though it’s our SECONDARY. It took approximately 25 calls and 7 hours on the phone to speak to a human being (while having someone at Blythedale also simultaneously calling) who told me they needed me to fax a letter from GHI proving that a I have GHI (my insurance cards were not good enough). Oh and that they wouldn’t return calls to the person at Blythedale calling for me because they don’t call 914 numbers. And…I had to fax the documents because their offices are located in the 1980’s apparently where email doesn’t exist. We faxed it 4 times and I’m still waiting for confirmation that they received it.

Now for Brenden: He is doing really great! He has had basically no desats and has been very happy and alert, as well as sleeping soundly. He’s gaining weight and his head circumference has grown 1 1/2 cm since he’s been home (when it grew at a slower rate in the hospitals-it had only grown 3cm since birth in the hospital)…so maybe it will catch up now? When working with PT/OT, he has been able to sit up with assistance and hold his head up by himself for short periods of time. We were able to discontinue his Lovonox (follow up in October) and he had a successful first pediatrician appointment last week (where Mommy drove). This coming week, he has multiple follow up appointments.

The other day, we ventured into the living room (which was a big production) and hung out as a family for the first time ever, watching tv and eating pizza. It was amazing and emotional. Juliana was LOVING her little brother so much! Brenden was so comfy and even mouthing like he wanted to eat pizza too! Obviously he is too young, but the therapists believe that he will be able to start working on on his oral skills to get him tasting things!!

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More updates to come! Thank you all that have been following Brenden’s story and continuing to pray for us!! xo

Almost home!

Bye bye, NICU! Hello, Blythedale!

(For a post on our emotional ✌🏼 goodbye at the Nicu…click here —-> NICU Farewell)

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So it has been 5 days at Blythedale and things are getting much better. When Brenden was first assessed by the doctor, he was struggling. We aren’t sure if it is from the ambulance ride or from being on a new vent/new settings or the fact that it took a few hours to get him set up/suctioned…or maybe a combination of all those things (probably this)…but by the time the doctor checked him, he was struggling to breathe and retracting. His oxygen saturation was low for him (dipping into high 80’s) which is unacceptable to us. When Brenden struggles, we struggle. We’ve learned so much about him that we quickly went to work suctioning and questioning the doctor about vent settings.

There was quite a bit of a getting-to-know-you time because it felt like the doctor didn’t trust our knowledge of our son, and said a few condescending things about the hospital Brenden came from (“this is the gold star standard of care, unlike Cornell”…and “the hospital must have been under ventilating him because he was struggling until I changed his settings” although he was still struggling at this point…we explained that no, he was struggling because of everything that happened AFTER he left Cornell! Cornell saved him!!). Long story short, Mike & I figured it out…his humidity in the vent was too low. When questioned, they said they put him on a low humidity because of “rain out” (condensation in his tubes)…but we realized Brenden likes rain out. Once they raised the humidity, he got very comfortable. This took DAYS, you guys. And being told by a respiratory therapist that his new vent, a Trilogy, is a HONDA compared to the vent at the hospital, which is a PORSCHE…um what? Obviously, we didn’t like that statement either, which was later clarified to us as being untrue.

So, after a lot of miscommunication, it has gotten better. Huge sigh of relief!😅 Brenden is doing better now! He has been receiving PT, OT and SLT. A lot of the staff at Blythedale are super nice to him (and us). We’re getting to know the staff each day and feel more comfortable.

Today, he had a scope of his trach (everything was clear) and we upsized to a 3.5 cuffed Bivona from a 3.0 (with approval from our ENT at Cornell, of course). I volunteered to do the change. It was the most difficult change yet (there was a lot of resistance and a little blood), but Brenden (& I) survived. 😅 The same doctor complimented me and said “no one could have done it better” (although, I am leaving upsizing to his ENT in the future!)…

However, the commute is TORTURE & seems worse each day! With traffic it has taken us 2-3 hours (without traffic, 1-1 1/2) to drive. It’s awful and we are physically and emotionally drained. I do most of the driving and I am starting to hate driving (which used to be something I enjoyed). While we did get to bring Juliana to meet Brenden (see that post here—>The beginning of a beautiful friendship) and his Mema finally got to hold him…and he’s been getting some great services…we don’t want to stay here long. I have no time to do anything except drive, it seems. We get home, sleep a few hours and go back.

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We tried staying at Blythedale (taking turns), but Brenden has a roommate and the parents are a little too comfortable (leaving dirty underwear hanging in the shared shower/bathroom space, for example…). It feels like freshman year of college in dorms, minus being young and drunk, which = horrifying, so we’d rather go home. We might get an Airbnb next week (although it seems very expensive) or just continue to commute. It’s hard to think ahead and not live day to day…we wind up figuring out plans last minute, which is impossible since we have Bailey & Kiki, too! 🐶 🐱

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I haven’t written in Brenden’s daily journal since we got here (although I will back-track, hopefully today). Health wise, Mike & I seem to be suffering from various stress related ailments…so I’m hoping they will settle once we take the travel component out of the equation. My mom is also exhausted, as she is basically our only babysitter for Juliana this summer, except for one dear family friend who helps too. Yes, we can bring Juliana up with us but it is a lot to handle an excitable toddler in a hospital-type room ALL DAY.

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On top of this, we are simultaneously preparing Brenden’s room (decorative-wise). Thank goodness my best friend is an interior decorator, because I can’t even think straight when it comes to this part! We need to order some sort of storage closet for all of his supplies (that have not come yet), since we don’t have extra closet space. His equipment has been ordered…I was told that one vent is covered, but the back up might require a special letter written & a fight for coverage (as expected). We received a special “Zippie” stroller through the Joshua Frase Foundation‘s Equipment Sharing Program (THANK YOU!❤️). Nursing is being arranged…still not 100% sure what we will get approved through insurance…some sort of contract is being worked on. We still need to get a new car (we’ve narrowed down the minivan search to 3 types). Also, we are trying to get Juliana prepared for all the changes she will see happening once Brenden is home (like how she is kinda switching rooms). I don’t even know how to prepare myself, so preparing her is kinda impossible! 😂

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It’s definitely a change from our NICU bubble, all things considered. The rehab is not an ICU, so the level of attention he gets is far less…which makes me nervous since when he gets home he’ll get more attention…buuuut there are some good things about it. For example, they have a list of things we need to accomplish before taking him home. The day we arrived, I started my list by showing that I could administer his shots, suction, set up feedings, etc. We attended a CPR class and were able to tell the instructor everything we knew and she said “oh wow, I don’t know what else to teach you then!” Lol I even asked her a question she didn’t know the answer to. 🤔 It has made us feel more confident in our abilities. Then, they asked me to do a trach change by myself. This is something we were taught to never do solo…but Blythedale is right to ask me to do it (only one parent has to pass this test) because what if there’s an emergency one day and I am alone with him? I kind of like this practice so I’ll always be prepared. As of today, we completed the whole list except giving a bath…which is probably the easiest of things to do! 😀 🛀🏽

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Also, given the crappy miscommunication during our “hello” to Blythedale…it proved to me how in tune Mike & I are to Brenden. We could recognize when things weren’t right for Brenden (even if it was subtle at first) and start to investigate immediately, even when it made things super awkward with the doctor. 🤷🏻‍♀️ We will always speak up for Brenden. However, sometimes it is hard because…like in this situation…I have to go home. I have to leave my son in the care of these people for hours every day! So I can’t go ballistic when things don’t go my way. If anything this wholeeee journey has been a big lesson on patience, trusting my gut, but keeping in mind my own self restraint (I am a pretty emotionally driven person, so staying level headed isn’t something that comes to me easily-although it happens naturally in true emergencies).

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Anyway, we were given a discharge date, but I will not post it for superstitious reasons. I’ll just say I was given the choice between a Thursday and a Monday…we chose the Monday so we won’t face a weekend (& doctors not being available) as soon. But, the road home is in sight!

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Aaand it is August. I can’t believe I have a 4 month old son! I can’t even focus on the idea that I’m supposed to return to work in a few weeks.

With all that being said, thank you to everyone who continues to read Brenden’s story and reach out to us. We still have so many thank you’s to make and calls to return and literally no time. Thank you to everyone who has sent food/gifts and donated to our fundraiser …it has truly helped to lift one load off of our shoulders! Please know that if you have reached out to show us support, we know it & love you!

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Anyway, we’re almost home!

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It’s been a hard life lately & we are not the same people we were before…but hopefully soon there will be normalcy to who we are now and what we need to do…maybe even, a bit more joy…❤️

The beginning of a beautiful friendship

(From my Facebook post)

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Yesterday, Brenden turned 4 months old and FINALLY met his big sister! Juliana has been waiting quite impatiently for all these months and was so ready to “take care of Baby Brother”. When she came in, she was a little nervous…I felt the tears rising from my chest…but once she saw him, she literally got right to work and my emotions settled back. She asked about his trach, she drew him some pictures for his crib, put on gloves, checked his heart with a stethoscope, helped the nurse with his feeding and told him she loves him. This kid didn’t even skip a beat. We’ve been prepping her, of course, but the ease in which she transitioned into this new situation was astonishing. She is so naturally nurturing and smart! I couldn’t be prouder of both of my amazing babies! I am the luckiest Mommy in the whole wide world! #JulianaCaroline #010716 #shegivesmelife #BrendenMatthew #040118 #toughestguyiknow #ilovemybabies #proudmom #theyfinallymet #myheartisfull #specialneedsparenting #childlife #whydoimatchthechairstho