Wednesday, June 17, 2009

Tethered Down and Cath Bound

Some days just don't turn out the way you hope. And when this is the view out your front door at five o'clock, you know it's been one of those days.

McKay's check-in with cardiology came none too soon according to his doc and his sats. Little Boy Blue's oxygenation has been steadily declining over the past few months and point by point he's earned his awful green tanks back. He bounced between 69-74% oxygen saturation today at clinic after a 77% three weeks ago at his pediatrician's office. That's a big thumbs down for a kiddo who should be hovering in the mid-80's post-Glenn and still has over a year until his Fontan. Yes, the tanks and tubes are back to be used "as much as possible" with a wiggly soon-to-be-on-the-move 10 month old and they brought a more permanent friend, a zealously labeled pediatric oxygen concentrator with them. It's loud and obnoxious and does not go with the decor. GO HOME. It looks like I'd better make peace with it, however, because they all may be overstaying their never-were welcome.

(If any of you experienced heart moms out there know any tricks for how to assure roly-poly oxygen-wearing babes don't get tangled up in the tubes at night, please share. Tonight I just ran the tubing down the back of his pjs and out the bottom thinking it would be harder for his neck to get tangled up that way--thoughts??)

More concerning is the fact that his echos (like an ultrasound of his heart) reveal nothing that would indicate such low sats. No valve leakage. No squeeze issues. All GREAT news, but a continuation of the mystery nonetheless. McKay's cardiologist believes he may have some rogue vessels around his heart that are trying to create detours for the blood flowing into his lungs. Basically, we all have more minor blood vessels throughout our bodies that are perfectly content to be part of a more secondary blood supply to organs and tissues. But when an organ or tissue is not getting as much oxygen as the body would like, some of these vessels get pushy and self-important and decide to take things into their own hands. Some of these vessels can grow quite large and divert enough blood from its normal course of flow to create some pretty major complications. Ironically, these vessels that are trying to help the body can end up doing far more bad than good.

So what to do? The only way to truly know if that's what is happening is a trip to the heart cath lab. Boo. I have truly been dreading this almost inevitable part of the heart experience. We successfully avoided the cath lab prior to McKay's Glenn because, I firmly believe, I begged God to please not to make him (read: me) have to go through it. So instead we got an MRI. Much better in my book. I know it seems silly in light of the surgeries McKay has had for me to wince so much at the cath lab, but it just gives me the willies to think of that small tube snaking its way from the artery in Mac's chubby little thigh all the way into his perfectly ingenious little heart. Yuck. Alas, I don't get to choose these things and McKay is clearly in need of some interventions so we'll be preparing for a trip to the cath lab in the next couple of weeks.

So tonight I'm sulking a bit. Okay more than a bit. I stopped at one of my favorite bakeries (and there are many) on my way home from the hospital today because news like that just needs a cookie. Sadly, the news doesn't taste any sweeter tonight than it did earlier today--I even had two cookies just to make sure the first one wasn't a dud. No luck. Blah.

I know this feeling won't last. The sun will come out tomorrow and Mac will most likely take his new situation in stride. He is a marvelous work and a wonder. He's also the toughest cookie I know. Here's to sweeter days ahead.


allison said...

When Joshua was on O2 long term I would take the tubing that I'd normally run down his back, pull it to the top of his head & run it (along with a bit of slack for wiggle room) along the head board of the bed. This way his body never got tangled up. I should mention he wasn't in a crib, but was in my bed beside me.
Our cardiologist told us that Josh would likely have issues with colladerals (SP?) as you've mentioned between the Glenn & Fontan. He said it wouldn't be a big deal, just a visit to the cath lab to correct it. Have they mentioned cathing him to coil them off?
Anyway, we'll be praying for McKay.

allison said...

ok, I see I blew through the part of your post when you mentioned cathing him. I agree, sounds horrible...but he'll be okay, if Josh can sail through a cath so can McKay. (trust me, Josh struggles with every proceedure...cath wasn't so bad though.)

Lisanne said...

I am so sorry! We will keep him in our prayers and hope his docs can get things figured out!!

Jenny said...

Oh, Mindi. That is such discouraging news to have to go back to the oxygen. I don't know how you can even sleep thinking of those tubes at night (as if you were sleeping already:)). You and McKay and your sweet family have been through so much this year. I know you have taken a lot of it in stride but I firmly believe it is okay to pout just a little. You have the right! I would love to do anything to help. Send me to the bakery next time! Much love and support coming your way:).

Katie said...

Sounds familiar! We were just in the cath lab the end of April for the exact same thing...Maddie had 4collaterals coiled off. She handled it great, didn't have to be admitted to the floor, and we were home that night. Her sats are up and it's something we'll just watch, she may need another tune-up since she's prone to creating collateral vessels. She's had a total of 3 caths and has done well with each one. We've been lucky with no complications and we LOVE our cath lab doctor, he's just awesome. I'm sure you'll be in good hands too and I've been reassured that all of this new metal hardware in there won't interfere with her Fontan or cause problems in the future. Sorry he's on the O's, the tubing is such a pain and keeping them from ripping it off is quite the challenge!!!

jaci said...

Not fun! I'm sorry you have to go back to the oxygen, and have to go to the cath lab! I'm pretty sure that he will do fine, that little superman of yours!

Praying for you!

Love, Jaci

The Simmons Family said...

BUMMER... Owen's been on Oxygen from 10 months til' now and I still haven't figured out how to avoid the cord-tangling issue. He sleeps in his crib next to my bed so I check on him multiple times a night (paranoid? yes).

Owen has had 5 cardiac caths for coiling those collaterals and some ballooning. His sats always drop a little Immedietly after, but come back up within a week. Cath's aren't so bad. The worst part is afterwards when they have to hold their legs still (HA) to avoid bleeding out. Other than that.. not so bad.

The great news is his heart function is great with no valve leakage.. that's fantastic!!!!!

We'll pray for smooth cath in the upcoming weeks. Oh, wait, one question... what flow of Oxygen is Mckay on? I was told Owen can't have a concentrator because he's under a liter of oxygen. Just curious.

Andrea ;)

brees said...

Oh Mindi, I am always good for a cookie run, call me!!! I am thinking of you your boys today on this cool but beautiful day.

Sarah said...

I'm so sorry to hear that the oxygen is back. How discouraging that must be. I love seeing you smile despite all you are going through, even it it takes a cookie to do so! Take care.

wylie said...

I too am sorry to hear that the oxygen is back and the cath lab is looming. We are still praying for McKay and of course your whole family.

Mindi said...

He's only on a 1/4 liter for now. Do you think I should call the oxygen company about using a concentrator for that flow? When they dropped it off they set it for me and didn;t act like it was a big deal...?

Kyle and Alli said...


Bummer on the O2 again. Andrea, Grant is on a 1/2 liter and we have a concentrator. Call your company and ask them again. One thing we were told is that he cannot be on an extension longer than 25 feet so that the flow will reach him, but other than that, no problems. It is a major pain to haul it around, but doable. Mindi, I share your concerns about the cath scares me. I got to see another heart friend after her trip to the cath lab for collateral veins and it seemed like the recovery times was minimal...just a little cautious on the diaper changes. The X ray afterwards looked awesome too. Hopefully Mr. McKay will sail through this one and those dreaded tanks will be gone again!

Deanna said...


I've never made a coment on your blog and I'm not sure you know who I or my heart baby--Gracie is, but I have been following Mckay and his journey. I've silently been cheering and loving that he has been doing so well.

Gracie had to go to cath lab to coil off some veins before we were able to leave our 2 month stay after the Glenn. After 15 coils she was pink for the first time ever, she had a couple of artieries that were as wide as her aeorta.

I love both Dr. Gray and Dr. Day, but I'd say that Dr. Day is just remarkable in the cath lab---see if you can get him he is amazing!

Gracie is finally down to 1/4 liter on oxygen and is on the concentrator at home---its nice because it is humidified, We just hide it upstairs and throw the 50 ft. cord down stairs when we are down here.

Plus now that he is on oxygen 24/7 you can get a pulse oximeter if you want it and insurance should cover it. Don't ask cardiology to write the order, you'll get opposition because they don't think it affects mortality rates, but going through your pediatrician should work. Then you can sleep better through the night knowing the alarms will wake you.

Wow, sorry I rambled, I hope some of this is helpful. Good luck and if you ever want to see what his x-rays will look like after the coils I have pictures--it looks like Grace swallowed a bunch of ramen noodles.

Marshelle said...

Sorry to hear this news for you and that darling baby. He's performed miracles before...he'll pull off another miracle here too. I can't even imagine what you are going through and you have every right to sulk a bit. You have a lot weighing on you. I don't know how you do all that you do. You are inspiring. Keep up the great work McKay!

Joel and Angie said...

So sorry to hear all that. What an incredibly strong boy you have. Good luck with everything to come, we're thinking about you and your family!

Hallowsboys said...

Not fun, I thought you were long gone and done away with that paraphenlia (spelling)! None the less you are in my prayers and thoughts always!

Sabrina said...

Mindi, you know we *just* went through this with Lu. same darn thing. Those oh-so-smart blood vessels thinkin' they're doing a world of good. interesting, in Lu's case they boosted her sats inot the 90s-and I only found out after the cath how dangerous that was...basically it could have raised her pressures-not good.

anyway, this is going to be Okay. We've been through 2 caths now-yes, it's another mini-mountain in the great climb-*but*, I assure you it's not that bad. seems like the docs will do the same-cauterize those errant vessels.

hugs-I'll call you this week, xoxo sabrina

Ryan and Hilary said...

I don't have any profound insights as to the oxygen things, I just think your amazing and that you take this all in stride. I am proud of you for indulging in a cookie..or two..and for letting yourself have one of those days. I know that the cath is super scary. I too was so concerned about it. After it was all over I had to laugh at myself, after all he and I had been through this was a walk in the park. He will do fine and so will you!!