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…❤️