Joey's off the Ventilator! - Part 3

Joey's breathing on his own again! We're at home, so we just heard over the phone from the nurse, but he'll begin eating again soon, and that should make him very happy! He still has the weird rhythm, but they hope it will go away on its own in a couple of days. He'll continue weaning off of the cardiac medications, although he'll continue using the pain meds for the foreseeable future. We're still very excited!!

Breathe In, Breathe Out

Joey is doing so much better today, Praise God! He has really bounced back well in such a short time.

This morning they took out the breathing tube - off the ventilator again! He's breathing pretty well, although a little fast likely due to extra fluid leftover from yesterday. (To raise his blood pressure they had to give him extra fluid during the recusitation.) His eyes are open, looking around, stretching and wiggling like a good little baby!

One of his previous heart medications is no longer acceptable after his arrythmia, so today's big trial is another type of heart medication. So far he has tolerated it well, cardiac-wise, but they're still watching to make sure his heart doesn't start freaking-out again. No more of that, please.

If all goes well they will talk about moving him to the step-down unit possible as soon as tomorrow. :)

My little Chubby Cheeks is eating again, also, although he's taking it slow. It is very common for kids to be a little slow in picking up eating habits after all he's been through. He is happier at least having something in his belly, understandably!

A Cry Heard 'Round the World

JOSEPH CRIES!!! The irony of this excitement is not lost on me, just so you know.

His voice has been slowly coming back in little cooing bits. At first I thought it might be wishful thinking; after all, the ENT warned me it could take months. But several days later and everyone is starting to look his way as he makes himself known! He still goes silent when he tries to scream, but I think I'm more than content with that development. :)

As a friend said, Who would have thought we'd be praying for a baby to cry!?!?!

The Silent One

A full 10 days that he's been free from the breathing tube, and Joseph still has no voice. Well, not much of one anyways. His coo is like a soft gentle breeze whispering through a summer night, but his cry is, well, silent. His entire body will be screaming with a scrunched-up red face and back-arching and head-shaking, but his vocal chords haven't gotten the memo.

Today he saw an ENT (or should I say the ENT saw him? ) who gave us a good reason. The concerns were permanent damage to the vocal folds after being intubated, and also a potential lack of seal from the airway. The good news is that there is no immediate problem that could be compromising his eating or airway. The bad news is that his right vocal fold is loose, which means exactly what we're seeing - he's not making a lot of noise.

We will follow-up with the ENT over the next few months as an outpatient to monitor progress. He sees no reason why Joey won't be yelling with the rest and best of them, but it may take a few months. If there is still a problem in a year then we may have to intervene. Meanwhile, anyone have good suggestions for watching and protecting a baby who can't cry?

In the eating realm, Joey is still slow and steady. We decided that his jersey number is 22, since that's about what he eats (in mililiters/cc's) each time. Just this evening he managed a whole 25! Regardless, he is gaining weight beautifully. They will remove his NG tube tomorrow morning and see how he does!!! Please pray that he eats well and can leave it out!

Joey's off the Ventilator!

So yesterday, Sunday, they took a chest X-ray and it was cloudy. That means that his lungs are "moist" and have to work harder to exchange oxygen. Because of this, they upped his meds to make him pee more in order to "dry them out". They were already set to start doing some more invasive lung intervention today when it didn't work because it's been cloudy for almost a week now. However, when they x-rayed him this morning, it was miraculously all crystal clear! All of the medical staff were surprised and happy.

So, this afternoon, they tested him again, and then removed the breathing tube. He was great with it! He had to suffer through Roddick loosing in the 5th set without making a sound and wanted to cheer with his aunt the Brazilian blowout of Chile. It was removed during halftime and he was able to squeak cheers out for the 3rd goal. :)

They're not positive that he'll stay off the ventilator because his heart small, so that it still has to work hard to pump the blood. Time is the only medicine for that. Obviously, we hope that this doesn't happen, but even if it does, it doesn't mean that he's backsliding.

We're all happy here for this, and Bella and Anastasia were their usual hooligans during mass tonight. Thanks for the prayers and we look forward to the day when we have three kids at mass again!

We're honored to be in all y'all's thoughts and prayers,
Pat, Kate, Bella, Anastasia, and Joey "Rocky" Tramma

Snuggle Time

These pictures are much easier on the eyes. I just HAD to share.

He loved his Daddy singing to him.
He cried in Mama's arms at first, but then rubbed his head against my bare arm and settled down.
He couldn't take his eyes off his Gram while she was talking to him!

Joey and the Ventilator

Joey hit a bit of a wall today trying to come off the ventilator. He passed the challenge earlier today, which means they basically turn the machine off and let him breathe on his own. He did fine with that, but when it came time to take it out, he had troubles breathing. They left it out for a few hours, while he still struggled without the help, and then put the tube back in this evening. It's really disappointing to see him get stuck like that, but everyone assures us that it's quite normal. They put the tube back in and gave him a breathing treatment, and he's breathing like a champ again!

He's also having pain med withdrawals from the meds he got during his recovery time from the two procedures and coming off ECMO. My little boy has tons of needle sticks since his veins are small and it's hard to put lines in him, and he's getting methadone. We'll have to remind him when he's a teenager that his body doesn't handle narcotics very well!

Keep up the prayers! He'll rest tomorrow and continue to heal, and then they'll try again on Friday to take the tube out.

Yay Joey!

This chapter in our story is titled "Joey and his Rocky Balboa Heart"

Joseph is completely OFF the bypass (ECMO) machine!!! The weaned him gradually friday night and he tolerated well, and yesterday he maintained well on the lowest setting. Yesterday afternoon they ran the normal "clamping test" during which they turned it off completely and took at echocardiogram of his heart, watching blood flow and pressure build-up through his valves. Everything looked good, so they took the cannulas OUT! Joey maintained good vital signs, good blood flow, good everything!!! A result of this was having to ligate (close off) one of the veins in his neck they had used for the ECMO cannula, but his body will form new pathways for bloodflow. (Isn't the body amazing???)

They will not make any definitive decisions about today until later, but they'll discuss removing the paralyzing medicine so he can start to move a very little and open his eyes and try to take breaths. He is still on the ventilator, but in another day they hope to wean that, too! It's a very gradual process, so as not to stress out his body too much. We want to see him slowly take over at a pace he can handle.

Keep those prayers going, including one of thanksgiving today~

Thanks and God Bless,
Kate, Pat, and Joey