Boston - Baltimore - Bravery

I don't normally update this blog, but when I do, I have a gin and tonic nearby.  😼 Tonic is good for you, right?

Where do I start? Well, first of all we have to explain why there have been fewer updates to the blog throughout this part of the journey.  The reason is that this platform was changed over to another server and I think Google took over. Therefore the blog update app no longer works and you need an actual computer or laptop to make real updates. That means, you will get fewer updates by Alex since she is primarily serving as Mighty Mac's personal assistant and never strays far from his side. Her phone is handy, and thankfully, Facebook and the Go Fund Me site have apps that can be updated quickly. So - if you want timely updates, ask to be added to her Macsen The Grayt FB page, or - go visit his campaign: Miracle for Macsen

So Boston went by in a blur. We were expecting to be there for 2-3 weeks tops. That was 3 weeks ago. Lots of reasons for this - at the end of the list is - there's a good reason, because everything happens for a reason. First impressions: Right away we knew we were in the right place.  Expensive - but, top-notch medical support.  My only criticism is that they seem to suffer from "last-minute-itis."  When did they get notified of housing through Ronald McDonald House (RMH)? Last minute, when they already had an apartment (non-refundable) reserved for 1 week through another company. When did they hear about the plan for any of the major things that actually happened, YES! You guessed it, at the last minute. But I digress.

Things that were awesome about Boston:  The apartment through Ronald McDonald House only 2 blocks away from the hospital.  The public library was pretty cool.  4th of July was kind of neat.  Riding the trolley was a highlight for Mac.  Oh yeah - the awesome research they are doing at BCH - combining research efforts with the result of shooting a bunch of mitochondria into a newborn's heart (who was out of options), only to see that the mitochondria went to the bad places and fixed things enough to save a life.  Astounding medical advancements! Stuff they do in Boston is giving us HOPE that if he could just get a few more years maybe some sort of miraculous thing could be developed to allow him to live a full life.... we also liked the Duck Boat tour.

So anyway - Mac didn't get the pacemaker in Boston because he got bumped from the surgeon's schedule for another young person's second chance with a new heart. Transplant surgery takes many, many hours, so, all the doctor's cases planned for the same day as Mac's got postponed.  We hung around for a while, hoping they would work him in, but - finally they said we would not be able to get on his schedule again until July 25. Even with the apartment through the RMH, the costs were prohibitive to staying in Boston, and they decided to wait it out in Maryland at my place.

(Queue the dramatic music that should warn them to RECONSIDER! STAY in BOSTON! The entire time this dramatic music is playing, flash scenes from an epic 7 hour road trip that actually took 12.5 hours. The kids were great, the adults were losing it by the time we actually arrived.)

They were at my place for a mere 2 days and all of a sudden Mac was struggling. Thankfully, I had left my car at the house so she had wheels and WAZE to navigate to Baltimore Johns Hopkins Children's Emergency Room. UGH He bounced from the Pediatric ICU to the General floor and then back to PICU.  The thing about Mac that takes time to figure out is that he doesn't "look" as sick as he is - he is such a character that he sort of makes you forget that he is really sick. His nurses plead with him to stop somersaulting in his bed and setting off the monitors. Seriously. He says to me, "upside down is my middle name."

I spent the better part of this week with Alex and Mac at Johns Hopkins this week because Aaron was home in Alabama.

Things I won't forget:

His hugs.
Mac is a hugger. When he hugs you he just sort of melts into you and it feels like you are the only person on the planet worthy of this type of love. It is a great feeling. He is somewhat with his hugs, but he definitely reserves the best ones for a special few.  We had some great nurses this week - and I can't help but give a shout out to the JH PICU nurses that really made a difference.
Olivia, Sam, Becca, and - the most special one (in his eyes) - Kelsey. He gave Kelsey 2 kisses, asked her to tell her friends about it and later, he gave her name to the flight crew when they asked if he had a girlfriend. She made quite the impression.  It could be because she was efficient, but I think it was also because she was gently stern with him when he would have a temper tantrum.

His temper.
Mac really struggled in PICU (I think) because his electrolytes are all out of whack.  He gets dehydrated at the drop of a hat, which is what they found upon admission on Monday. His potassium levels were low in the last labs and he was a little rage monster. Seriously it was like he had "'Roid Rage" - getting upset over silly stuff that never bothers him, and needing things done for him "Right now! Hurry! Hurry!" It was a little crazy.. and very unlike him.  So, they gave him some potassium and I swear it was almost instantly effective! He was back, able to handle little frustrations on his own and so, so, sweet. Balance is important, people.

His laugh.
Mac has the best.laugh.ever.  People around him will do almost anything to make him laugh. He does the same for you. He loves to make people laugh. He loves slap stick. One of the best ways I found to make him laugh this week was to play like I was forgetful... forgetting what I was doing (get up to get him something and then pause and announce... "now WHAT was I doing just now?" or "What - where am I?" or "Hey! What's my name again?" He would get a big kick out of helping his old, forgetful, Abby Gabby out, but he couldn't help but laugh.  He also loves it when you can bounce balls, or toys, or whatever, back to him with various parts of your body.  Head butt the wet rolled up paper towel (maniacal giggles), hip check the toy plane (belly laugh!) I love that laugh!

His quest for a full belly.
Mac was so hungry, so much of the time, that he would say, "My stomach is eating itself!" Sometimes he was not allowed to eat because the medical team thought they may need his stomach to be empty. When he would be cleared to eat - he would say "Finally! - Please, [insert bystander name], get me some [insert food type], NOW! Hurry, hurry!" And off we would go!  His Nanna came by and made 2 trips to the cafeteria to get him sliders and later, pizza. this is after bringing him his favorite 2 kids of soup from Panera. He finally ate about 1/4 of 1 piece of pepperoni pizza that day.  Ultimately, the only thing he actually ate was "nachos" which, actually, wasn't nachos at all but actually quest dip from Baja Fresh.  He needed the chips to be broken up into "little but not too little" pieces, so he could dip them in and swipe off the green or red peppers. Man, he loved that queso/nacho cheese.  He had that for dinner and breakfast, twice.

His eyebrows.
Mac has the most expressive face and when he is "on" there's nothing like it.  Such an entertainer, and so funny! Many people often remark that he seems like a grown man in a tiny little body. His grasp of the English language is impressive - and he is scary smart.

There was a lot more that I never want to forget but - like I said earlier, I am old and it's late. So, that is it for now.  I just got a text from Alex that confirms they have landed safely in Boston and are enroute to BCH. This is answered prayer.

Now - on to the next part of the journey.  Does he get a pacemaker? Will this buy him a little more time so that the great research and advancements can offer a solution for Mac such that he can actually have a full life? We are praying! Keep on praying. Thank you for all your support.
~G