No rest for the weary...

I didn't get jack for sleep last night. Jason had medicine at 3am, vitals at 4am, blood drawn at 5am, nurse change at 6am, woke up to eat at 7am, construction began on the floor above us at 8am, an echo cardio gram at 9am and he wanted to eat at 10am, and then Bonny finally showed up...and told me that a friend of ours was in the hospital (ICU). So, I went and visited her at 11am and finally got to work just before noon.

At least Jason got a little bit more sleep than I. Hopefully, he'll get some naps this afternoon.

He needs all the sleep he can get.

-J

Englarged Hearts Aren't Contagious

Or at least Jason's isn't.

Jason's final viral culture came back negative. That means he is out of contact isolation. So, what does that mean. Well, most importantly, it means he can go to the play room. Sure, it means other stuff too, but we know the real gain here: giant foam blocks, toy pianos and several things that make a lot of noise.

At this point, anything that improves his quality of life cheers me up and I hope it cheers him up too.

There it is...

The Event

Yeah, this baby's okay...

but I bet Jason has at least 23 charisma.

Stiff and Sleepless

That's Bonny and I, but Jason's doing pretty good. His IV is out now and he's just chilling out. He's being observed and is on monitors. Other than that, they check his vitals every 4 hours and give him medicine a few times a day.

He watches his little movies and plays with his toys.

He got a new Elmo today. His face lit up when he saw it. He used to have an Elmo, but it had to be thrown away. That was months ago. So, refinding his best friend was a welcome familiarity in a still unfamiliar setting.

Zoë is weathering things well. She is getting stressed and having separation anxiety, but honestly, so am I. My mom is here now keeping an eye on her for us. I'm signed up for some special medical leave and hope to use it to ease some burdens.

-J

Tankless and happy

And why shouldn't he be. Jason is off of oxygen. He was never in need of oxygen. They were just using it to dialate his veins. At any rate, he's off of it now and is quite happy about it. And who could blame him. He's been yanking at those tickly clear worms in his nose for days. FINALLY, he chased them off. So, other than being monitored constantly, he only has to take medication.

Hopefully, this will mean he's under observation for a bit and then can come home. He'll have to continue taking about 5 medications when he gets home, but that number should come down over time. We won't know until much later whether that comes down to no medicines or if he has to keep taking one or two forever. We'll see.

very brief update

Well, Jason is back out of the ICU and in a regular hospital room. He's doing well and handling the new drug well.

Zoë is up to about six consecutive steps at a time now. After that she resorts to leaping after what ever her goal is.

brief update

Jason is on the new medication now. It is a beta blocker designed to help his heart relax. Thus far, he seems to be responding well, but it takes at least a week to get the dosage correct and normally it takes a week to see a measureable change in heart size.

Back in the saddle again...

Assuming ICU is a saddle.

The long and the short is, Jason's heart actions have improved, but his heart hasn't.

In other words, now that they have had enough time to see heart progression, they show that his rhythm, pulse and pressure are better, but his left ventricle is larger.

He'll be switched to a new medication, which is more hardcore, so he'll be back in ICU at least until they determine his dossage. That could easily be a week, extended our entire stay past the end of July.

Updates as I get them.
-J

Hearings are for both kids.

He’s doing well enough that a heart transplant is extremely unlikely.

Viral cultures will take 2 to 3 weeks to be processed. He will likely be out of the hospital before then. He will need to limit contact with folks until the cultures are done, but none of the doctors we’ve spoken with expect them to come back positive

Friday and Sunday are two possible release days that have been thrown out. Obviously, this is contingent on his continued improvement.

I woke up at 5am this morning and got to work at 2pm. Needless to say, I don’t have a lot of free time. So, make sure grandma gets word of all the developments.

Bonny’s mother is watching Zoë for the time being and will be leaving town Wednesday. We are lining out a baby sitter after that time, and hopefully Jason will come home this up coming weekend and we can start to return to normalcy.

Jason will likely be on 4 to 6 medications when he is sent home.

-J

Ding 11

We better start making plans for the cake.

Murder in a small town...

Well, Wichita Falls isn't that small, but the point is, they have been having a string of murders. And several have political pressures involved. They have pushed and suspended several dockets, including ours. The long and the short is, the new estimated hearing date is in September.

/sigh

Taking its toll...

Jason of course is quite tired of wires, hoses, needles and medicine. However, he's getting pretty good rest. At least they aren't doing the whole "Time to wake up and take your sleeping pill." thing.

Bonny and I are definitly showing wear. We have bags under our eyes and at least I am quite sick of driving between places. We are rotating in and out of the hospital.

Jason and Zoë are both quite upset that they don't get to see mom and dad at the same time (very often anyhow).

It's so obvious too. They are happy when they see either one of us, but when they see both of us, they are about ready to burst with happiness.

I almost had to kill someone the other day. They were trying to console someone going through a divorce and said, "At least the children are young enough that they don't realize what's going on."

ARGH!!! What? Are the kids a week old? Because if they are much mroe than that they know something's wrong. Maybe they don't realize all the complexities, but they know mom and dad aren't both around. Bah...

Well, I'm done sleeping, I MEAN WORKING...yes...working... Back to the hospital.

Out of ICU!!!

Short post, just to say, Jason got out of ICU about 2 hours ago. This is really good news. It was much earlier than suspected. He has a good rhythm of about 120 bpm. He has a pejorative majority of sinus rhythm. We're hoping to get rid of the pejorative part this evening. He's going to stay in his new room until he has a good stable sinus rhythm. Once home he will likely be on meds for a while until he exibits long term stability. "For a while" will range from a month to years. We'll just have to see. But all signs are pointing in a positive direction.

Out of ICU???

Well, yesterday we were told that most probably Jason would be in ICU for at least 5 more days and then at least an additional 5 on the regular cardiac floor. So, essentially AT LEAST 10 more days and maybe as much as a month. In relation to the time the other kids in cardiac ICU are looking at being there, this is actually good news. Toady's news was even better though. Apparently, he is responding well to his medications and now they think they will be able to move him the the floor alot sooner, maybe as soon as this afternoon. He seems to be in good spirits overall. He has started eating good again and is now playing and talking and generally using all his charm on the staff, who, of course, think he is terribly cute and generally wonderful. We appriciate all the concern, well-wishes, and prayers. We're all hoping for the best. We'll keep you updated.

Love,
Bonny

More Jason Stuff

They are not doing dobutamine all the time, but pretty close. The dosage is relatively low and is administered at the same time as the digoxen (which I believe is continuous). I haven’t seen the doc today, but it was my understanding today is probably his last day on dobutamine.

He is on heart, respiration, oxygen and bp monitors all the time. He’s on a regular schedule of EKGs and echoes. He’s also had a few more drugs added to his cocktail. I don’t recall the names off hand, but they are accomplishing the things I’ve already discussed, lowering BP, reducing and regulating heart rate. The alarms when any go to far a field are annoying. I mean, obviously I don’t care, because if it’s not a false alarm, we want to know about it. But the false alarms happen every 20 minutes or so.

Jason got down to 90bpm yesterday evening. That’s a little lower than they want, but still in the basic target area. It stayed there for about 30 minutes then went back to 150bpm. It’s been bouncing between 90 and 160 since then. The short term goal is to stabilize it somewhere around 120.

He’s also started to get some regular beats. When he’s between 90 and 120, he gets 5 to 10 regular beats a minute. About half the time he’s going from a regular to an irregular heart beat he skips a beat.

Jason update

I'm too busy/lazy to clean this up, but ya'll'll get the point.

That's right ya'll'll. You-all-will... Hmmm.

---

When Justin gets a chance, he can correct any inaccuracies in this e-mail. I'm giving it my best shot, but I didn't take any notes except for the IV drug name, which Justin was spelling by memory.

Our grandson, Jason, is in ICU w/ an enlarged heart. They currently have him on Digoxin to strengthen his heart (it's not beating properly), Lasix to get rid of fluid around the heart, Dobutamine (sp?) (IV), and will be putting him on a Beta Blocker soon.

Jason vomited enough Sun & Mon to dehydrate himself, so Justin & Bonnie took him to the doctor Tues. They immediately sent him on to the hospital. In fairly short order, they did an EKG and an electro-cardiogram and discovered that his heart was enlarged and not beating properly (Justin described it as a galloping sound; i.e. 3 sounds to the beats instead of two). They will be doing some more tests today including repeating at least one of the above. They say there is an equal chance of one of three different possibilities -- 1) it's viral, which would mean it's temporary, 2) it's hereditary, but can be controlled w/ medication, 3) it will require a heart transplant.

Don't spread details from this too much, you might have to go correct half of them. :)

Needless to say, we're a bit on pins and needles, hoping and praying for the best. Hoping many others are, too.

Thanks for being there for us.

Ann

---

Corrections:

Okay, we took Jason to the hospital to hydrate and nourish him. They did an abdominal x-ray as part of a routine check they always do. That showed the enlarged heart, so they did a zoomed in chest x-ray. That confirmed the enlarged heart, so they did an echo cardiogram and an EKG.

The drug stuff is basically correct. So, I’ll leave it be.

The causes and outcomes aren’t linked as suggested in paragraph 3.

It could be caused by infection (bacterial or viral). It could be genetic. It could syndromic. It could be for some reason they don’t know.

Independantly, the outcomes have about equal likelihood and are:

- medication gets him to a stable point where it is hard to tell he ever had a problem

- same as option one, but he has to continue medication to keep in under control

- medication does not control it and he needs a heart transplant.

The latest news is that he got his first real nap since going in and has even begun to smile again … upon occasion. We brought him some Baby Einstein and Veggie Tales DVDs to give him some familiar background noise, and he seems to be appreciating that. He is able to eat without throwing up. And he’s on a pretty good feed. They’ve dropped in dextrose down to 5mL/hour. I believe he’s on a 10% solution.

All prayers are appreciated.

-Justin

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Real Quick

I really am quite busy these days, but just as a quick update. The termination hearing which was scheduled for June 26th has been postponed to July 12th. Updates as available.

-J