Action Stations, Action Stations. Set condition one throughout the ship. This is not a drill.
Times change. Foreign policy evolves.
The blockade worked for a while, but intelligence suggests that the enemy is gathering, and in possession of weapons of mass destruction. Possession of weapons of mass destruction is an act of war. Boston Children’s Hospital forces are thus preparing to invade.
After progressing nicely for a while, Ari’s weight has been flat for a month. In the middle of the last month he had his first stomach bug and survived well enough (though the washing machine took a beating, and we can’t watch the movie Bridesmaids anymore), but his weight hasn’t progressed since.
His breathing is a little faster than it has been, and he throws up (not spit up, we’re talking straight-up hangover-like heaving), now several times a day despite measures to keep the ship steady. He’s not taking any food by mouth – milk or solids – and never gets hungry.
Mind you, all of this evidence is circumstantial. He could have a twitchy stomach. He could be a slow recovery from the bug. His formula may simply not agree with him, though it is pre-digested (ewww…).
We don’t know because our weapons inspectors have not had complete, unfettered access to cardiac weapons storage sites for a while. The borders are closed. If we want to see what’s going on, we have to go in.
And in we’re going, weapons free. Maybe George Bush had it right…if you know the enemy is going to attack, might as well get in there and get them first before they get any stronger.
The plan is to go in on January 7 to look around and see what’s happening, and shoot any enemies we come across. The most likely target is the mitral valve. If you remember correctly, Ari has a Melody valve in his mitral position, and had a 2.7 millimeter fenestration put in his heart, partly so we could access the valve in the cath lab for dilation.
Since Ari is only the 5th person in the world to have a Melody valve in the mitral position (it’s intended to be a pulmonary replacement valve…it’s not FDA indicated for use as a mitral valve), it’s not an insignificant procedure to balloon it. Indeed, it’s not an insignificant procedure to balloon any valve, but you gotta do what you gotta do.
By the way, it’s not that the valve is necessarily going bad. You may remember that babies grow, and inanimate objects don’t. (How’s that for a biology lesson.) So he’s getting bigger and his heart is, we think, pumping more volume with more force, but the valve is still the same diameter. It hasn’t grown with him, so it may simply need to be right sized.
Imagine spraying the lawn with the hose and an everyday pistol grip nozzle. You turn up the water flow. What do you get? More resistance at the nozzle, and more spray. You can hear the spray, too.
During an echo, you can “hear” the spray as well. It’s called a gradient. The noisier the gradient, the more resistance at the bottleneck. If you widen the bottleneck, the flow comes faster, the spray goes away, and the pump doesn’t have to work as hard to get the volume of flow it’s trying to achieve.
At the last echo, while his heart looked spectacular, there was, indeed a gradient across the valve.
Thus the desire to dilate it.
Perhaps if we do that, he’ll tolerate food better, breathe easier, and start growing again.
Then again, it may be the busted pulmonary valve. It was busted last time we looked, and we’re pretty sure it didn’t magically fix itself. Maybe that’s it.
Maybe his pulmonary hypertension is getting worse again. Can’t know that until we get to the cath lab. Perhaps the problem is that his left ventricle is not relaxing. There’s nothing we can do if that’s the case short of waiting for it to get better or transplant, so we’re hoping that ain’t it.
We might also find out his heart is fine(ish), and shoot no enemies. It could just be a coinkydink that he has twitchy stomach or needs a new formula. However, just like Dubbayah, we can’t take that risk.
So we are where we are, gathering at the border for a strike. Unless you hear different, prepare for news somewhere around Jan 7.
Condition one is set. All decks report ready for action.
Echo of Hope 
Any updates?
HUgs and prayers!
Thinking about and praying for good things tomorrow.
Thoughts and prayers with all tomorrow.. Lots of love, too.
I’m in your corner, Ari. Wishing you good thoughts for Jan 7.
I’ll pray for that smunchkin and you guys!! Certainly been through the washing machine…along with the stomach bug targets….Wishing for something easy (in the scheme of things) to fix….Love Ya – Jeanne
Love and prayers for all of you. My thoughts are with you. I will spread the word to my family so they will be praying too. Praying for Happy Trails and Fast and Speedy Recovery. Looking forward to next update. Glenda
Perhaps it is something simple to fix. He looks great and seems to have grown and filled-out quite a bit. Whatever the problem, I pray that it will be resolved and that Ari gets back on track again. Wishes for a happy and HEALTHY New Year. Marlene
This is staggering news! We thought he was doing so well! I’ve never had the pleasure of meeting you and. Ari, but I’ve come to love that boy with all my heart! Prayers and good vibes go out to you!
Love you Ari!!! Keep fighting smiley!!! Thoughts and prayers for you and your family….hang in there….
I am praying for littel Ari. I just can`t wait to meet this little man. Some day this will happen . Hang in Mom and Dad you guys are amazing . Sending love Gail M
Many thoughts for all of you as you go through this.
Lots of prayers coming your way. I know those nurses will be glad to see you, Ari. Your cuteness will make them crazy for you. Be tough little warrior.
I know a pretty cute girl who will be waiting for him and cheering him on!!
gosh darn, I’m sorry. 😐 happy new year? Thank you for being my tough role models.
Many Prayers, Hugs to Ari and his parents. Pat W.
I was going to say hang in there baby Ari, but let’s face it… You are a MAN! :-). You are tough and you’ve got a great team on your side! Thinking of your mom and dad too and how much they will be cheering you on and helping you be strong. You are mightier than many!!
I’m an RN, but I don’t have any experience in pediatric cardiology. However, your explanation of it all is crystal clear and compelling, as always. I can’t truly experience the depth and complexities of what you’re feeling, but as a parent I certainly get the gist. I’m hoping that by late January 7th you all can sit back and breathe easier. If you can, we will all celebrate another skirmish won.
P.S. Is there anything better then listening to our baby’s giggles???
Glad you have a plan in place. Keep us updated please. I think we’ll be up there sooner rather then later too for JW’s mitral valve. Will keep you guys updated on that. LOVE that you go to spend your first Christmas together, as a family, outside of the hospital!!! Love and prayers from SC.
We will be there January 9-10, Glenn on the 14. I am hoping your visit will be short!
Prayers assembling. Love to all.
We’ll keep you all in our prayers. Hugs to Ari!
The call to arms has been taken. I will pass on to my army! We love you Ari.
Dad gave us the news and wishing you all success. Prayer Chain is ready for action. xoxoxoxoxoxo
Sorry for the uncertainty, which is always scary. Not to mention having to go back into the cath lab, but (of course) I hope it’s one of the easier fixes, and not the left ventricle. I’ll be praying and thinking of you guys.
Hugs,
Judy Goldberg