We made it through Post-Op

Jack is still a little weary each time we go to the hospital, thinking that we may be strapping him down to a bed again. Luckily, we didn't this time. His x-ray was crystal clear. We did draw some blood and it looks like he is low on potassium and sodium (despite ALL the Gatorade he has been pounding.) So we were given prescription for the same potassium medication we tried to give him in the hospital, that he threw up. So I was a bit skeptical about taking it home. But we bought some wild cherry flavoring to go with it. To help you understand what a difficulty this med is, imagine condensing down some super nasty sea water and try feeding a tablespoon of it to your 3-year old.

Why is potassium so crucial? ...you may ask...

Well, if you have watched Boston Legal, Law and Order or have some really bad friends, you are familiar with lethal injection. Basically, what they are injecting is POTASSIUM, to STOP the heart. And counteractively, if you have too LITTLE potassium, it can have the same effect.

So, the "K" is kind of serious.

On a lighter note, we dropped one of the diuretics. That is good, because that particular one made him dizzy. And, we dropped a half-litre of O2. So we are back to the .5 that we were on before. The Cardiologist we saw (who isn't OUR normal cardiologist..) said that Jack's saturations were "ok". They were in the 74-77 range off of the O2, which is ok, but not what they want right now. So we'll stay on the O2 till our next visit, which is May 18th, when we see OUR cardiologist.

Also, if you remember, there is a hole in Jack's heart called a "fenestration" that they sewed to his fontan, that is sort of a "pop-off" for the new pressure flowing through his heart. Sometimes the fenestration closes on its own, sometimes a cath is needed to close it. Jack's heart is CHOOSING to pump the blood through the fenestration, and not the fontan. (The blood flows through the fontan, but the heart is PUMPING it through the hole, instead of PUMPING it through the new valve.) This isn't necessarily a bad thing...we'll just have to see what happens. And I'll get more answers from JACK'S Dr's.

So, all in all, he is doing well. Clear x-rays are wonderful. A kid that eats and drinks and doesn't have as sunken of eyes is wonderful.

We go back to Primary's on Monday for another blood draw. We'll see how that goes.

Good Times

I've been going through pictures to see if Jack was much chunkier before surgery (which I think he was..) and I found this picture. This was about a month or two ago, Jack took this blue bin downstairs and gathered a bunch of random things, like a candle, the remotes, his camera, Uniqua, Josh's shoe...

I just thought it was funny.

Brief update, today was a great day. He was very energetic, a lot more like himself. Still kind of weak, and gets dizzy sometimes. He did spit up his afternoon med's....but because he's behaving well I forgave him. We'll update after our post-op appt. tomorrow.

Psychotic Parent's

So this morning was somewhat a repeat of last monday, Jack didn't want to do much, threw up his med's, was breathing short, and kept curling up in a ball on the floor. We took him to Primary's for an x-ray, and LUCKILY it came up clear. The NP said he may be low on electrolytes, and that is why he is acting this way. So we are trying to pump the Gatorade into him. He did eat a little lunch, had his med's and then ate some spaghetti and meatballs. He's on his second nap of the day, and it's 5:00. I'm hoping this is all part of the recovery process. And not part of the getting worse process.

I can't wait till Christmas.

Vitals

Blood pressure cuff-

Temperature-

Listening to the heart.

That was what we had to do every 4 hours at the hospital. He's got it down.

Home again..

I wanted to let everyone know that we are home. It was quite a bittersweet experience because as we were leaving, baby Grant was moving back down to the PICU. It's extremely difficult to take a step forward while you watch dear friends take a step back.

Overall, Jack is doing great. His x-ray looked great, and his potassium levels are getting better, and he is on more diuretics (and O2) to help prevent another effusion.

I'll post more...we are just settling in.

Baby Grant needs prayers...

Everyone- please, pray for Grant. He had a hard night.

Another Tunnel, Another Light

I'm sorry- but is he not the cutest. How many kids smile this big when they're in the hospital.

Chest tube was removed this morning. Already he is moving around better and eating better. We actually SLEPT last night! (Between vitals and blood draws and x-rays) But this mornings x-ray went very well, and Jack was VERY cooperative, he held his arms out before they even asked and was so good. (The morphine is helping with his friendliness...)

So now that the tube is removed, depending on tomorrow's x-ray, we could be discharged tomorrow. A great birthday present for Josh..

I'm of course nervous, but he seems to be doing really well, and in addition to the pleural effusion, has had more time to heal from surgery. We'll still go home on O2, but we'll come back on wednesday to see how he is doing.

Thank you so much for all the prayers and kind words. And those friends I don't see often, I love you guys for even thinking of us. I'll let you know how he does today- and what the word is for tomorrow.

HERE WE GO!!

Latest

I'm very tired. So here's a summarized version of the last 24 hours.
-Jack didn't sleep last night. He was in pain and at 2am I had them give him morphine, which usually knocks him out, but this time cheered him right up, and we watched all the Gabba's, CARS, Toy Story and Madagascar.
-By then it was 5am and we did x-ray and labs. (only one poke this time)
-Fell asleep by 7am, woke up at 8 for vitals and rounds.
-slept till 10am.
- woke up for some chicken nuggets, didn't eat a whole lot.
-very cheerful in the morning
-took a nice nap from 12:30-2:30
-was woken up for vitals and meds -from that point on, very very irritable and acting like he was hurting
-had a hard time communicating what the problem was
-I caved and gave him more morphine
-now he is playing GI Joe with Kyle, Grant's dad.

It's hard to say what could be causing him so much discomfort, because it could obviously be the chest tube, or the fact that he hasn't pooped since Monday, or that his potassium is VERY low (again) and he won't take the medication for it, and could be cramping up.

Surgeons and NP decided against the Chylo diagnosis, since his chest tube hasn't had much output in the last day. So we are going to leave it in another day, then take it out, and stay here a day or two to see if it accumulates again.

That's all for now. I'm hoping he sleeps tonight or I may lose my mind. I wish I could go home and have Josh stay, but he wants me. What mother can say no.

Morning x-ray

So, LONG night. What night at the hospital isn't... After the multiple pokes for blood at 4, and then x-rays at 6- we fell asleep at 7. The Dr.'s made their ronds at about 9 and two of the surgeons, our NP Linda, and a couple others said the x-ray looked really good, and that we are going to wait it out to see if he gets better, before calling it Chylo, and putting him on the fat-free diet.

(good news. BUT, I don't want this happening again. I'm not going to go home and be in a constant state of panic thinking that he is filling up with fluid.)

So they said they were going to "make sure" that everything was ok before we are discharged.

The plan now, is to wait for more output from his chest tube, then take the tube out when it dissapates, then wait a day before being discharged to see if he fills up again.

Yep.

Chylo

So we are moved to the surgical floor (next to the Hicken's :) yay.)

They are watching Jack's drainage and there is a good chance it is Chylothorax. Simply put, when Jack eats fatty foods, there is MORE drainage and it causes the thorasic valves to leak mor fluid, filling up his chest faster. So if tomorrows x-ray shows more fluid, then we'll know it's Chylo and put Jack on a non-fat diet, and keep him here four about another week (ugh) with this chest tube.

The good news, is if we stay here with this chest tube we can help prevent this from happening again, and perhaps if he's here long enough to heal we can go home without Oxygen.

So- that's where we are now.