Our quick trip to Massachusetts was just that: quick (but not much less stressful than any of the others.)

As with most things, the unknown can be somewhat worse than the knowing especially when it involves this ginger boy!

The good news is Marshall blew the Boston team away. On Tuesday he had an upper GI (which was absolute torture. I’ve got the pics to prove it .) The imaging showed precisely where the malrotation is as well as how severe Marshall’s reflux is.

So the plan is to wait and see what happens with the gut. And go up, up, up on the reflux meds.

Our meeting with the allergy dietician was helpful. She gave us pointers on how to add calories to foods Marshall can eat as well as tips on introducing more variety into his diet. And we carefully monitor EVERYTHING Marshall eats.  Fingers crossed this will work…else the Boston team wants to place a g-tube.  Which I resist. Strongly. This little ginger miracle has been a strong oral eater since day one (with his sweeties and binkie until I could be with him).  A g-tube seems like going backwards to territory we should not have to tread given his abilities to eat, chew, and swallow.

Time will tell…

Wednesday was stressful but awesome. Marshall had BIG appointments with neurology, hematology, physical therapy, and the sedated echo. We had the chance to catch up with world renown doctors who pulled Marshall through some of the near worst imaginable and got to see how well he is now.

A very welcome, entirely unexpected outcome which was the complete reverse of what we all thought would happen when we first met these essential members of Marshall’s team.  You see, Dr R and Dr T became part of our lives during the heartwrenching, gut turning experience of Marshall’s stroke. And the ties we have with them grew to be as close to family as we could get without being related.

Marshall has come sooooo far since that day in 8 East when we met Dr R. And we’re all so happy and thankful for that.

So when we filled Dr R in on Marshall’s amazing determination to be a “normal” one year old and all of the milestones he has met, he was as happy as us.  Dr R wants us to add occupational therapy in addition to the physical therapy to ensure we give Marshall every chance we can. And Dr R has ordered a brain EKG to perhaps let Marshall stop taking one of his medicines.

Dr R ended our visit with a much needed and perhaps long overdue hug full of my thanks and tear filled eyes.

Then we briefly met with a new pediatric physical therapist who specializes in neurology patients.

Then we met with Dr T. He reassured us regarding the Lovenox injections we give Marshall twice per day. And he too was impressed with how far Marshall has come.

Then we fought Boston traffic for the sedated echo with a hungry baby who’d been NPO since 8:30 a.m. Just driving to the hospital filled me with this dreadfully anxious yet excited feeling I can not entirely explain. We spent so much time there it is like a second home now.  And once we went through those doors, though the place had changed, the staff and energy remain. Such bittersweet memories… and such relief to see familiar faces. On our way to the echo appointment, we ran into Nurse S who hugged me and marveled at how big Marshall is (for a little guy 😉 ).  Nurse S was Marshall’s ICU nurse after his first surgery, after his stroke, and during his time on the transplant list. There’s no other way to say it: we just love her.

Then we saw Dr V from the transplant team. Then we passed Dr P (the cath doctor from Marshall’s June cath) and Dr Friedman in the elevator.

And you know how deep our appreciation is for Dr P and Dr Friedman …

Anyway, Marshall despite having an empty stomach and missed nap, resisted the sedation. It took a half hour before the meds worked and he went out (man, did he yell!!)  Then the echo lasted for what felt like a short eternity. The nurses were great. The sonographer incredible.

Except.

They had trouble visualizing Marshall’s pulmonary veins and arteries.

So we don’t fully know what’s happening inside some of his heart. We do know the gradient (the post 2nd op blockage) has not changed much since the scar tissue blasting cath in October.

And the function has improved, however slightly. Marshall is still in moderate heart failure but apparently taking his time in recovering.  Small steps in the right direction are still progress!

As far as going forward, Dr Friedman met with us as Marshall was waking up. We had our reality checked in terms of returning in three months for more testing unless the gradient changes and meantime close monitoring with our home teams.

And discussion has already begun in terms of a planned cath and preparation for Round 3…things I’m not nearly prepared for at this point…

But we had good news. And we didn’t have to stay. And Marshall is home crawling around in his own little way tearing things apart and being ALL little boy.

And the thing about little boys is they are like baby bears when they’re toddlers… 😉

So thankful ❤