Wednesday, April 29, 2009

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.

Tuesday, April 28, 2009

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.

Monday, April 27, 2009

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.

Sunday, April 26, 2009

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.

Saturday, April 25, 2009

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.

Friday, April 24, 2009

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!!

Thursday, April 23, 2009

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.

Wednesday, April 22, 2009

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.

Tuesday, April 21, 2009

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.

Unbelievable.



So, the image on the left is today. The image on the right, is what he looked like when we came in yesterday. The blue circle, is around his lung. As you can see- it had NO room to expand and he was barely able to breathe. And all the fog on the right image is the fluid that has filled up.

He is still draining a little. I want to leave it in long enough to ensure we get all of it. Jack was low on potassium when we left the hospital, and now he is too high. We are waiting for that blood test to come back to see if we need to start him on medication to regulate his potassium levels. They've poked him FIVE times already today. Poor thing. I feel so bad.

So the cardio-thorasic surgeon that saw these images said "You could throw a dart at this x-ray and not help BUT hit the effusion."

So everyone was pretty impressed with the size of this thing. I'm SURE Jack feels better. While the nurse was pricking his finger again for blood Jack was yelling "I CANNOT BELIEVE IT!!!" like Quincy, from Little Einstiens.

Jack still has his sense of humor.

Morning

Jack did well last night, he slept most of the night. He is being REALLY good this morning. Very cooperative. He has drained about 700 cc's total now. The drainage is a little milky, which means we MAY have to put him on a low fat diet, but for now we are feeding him the same old stuff, to see if the fluid changes.

We'll be moving out the PICU today up to the floor (cross our fingers that we'll be in the N pod with the Hickens)!

I'll keep you all updated.

Oh- and I got images of his x-ray's. Wait till you see them. It's absolutely insane.

Monday, April 20, 2009

Here we go...

We are back in the PICU. This morning Jack wasn't himself. Even the "new" himself. Both Josh and I knew something wasn't right. He wasn't getting out of bed, didn't want to walk around or play, didn't want to eat, and was coughing and gagging like he needed to throw up. These are ALL symptoms that he had the day before we put his last chest tube in. So we went up to primary's and lo, he had a MASSIVEpleural effusion on his r ight side again. It was so big that our nurse Linda didn't even break it to us slowly. She came out from looking at the x-ray with BIG eyes and said "HUGE."

So we admitted him into the PICU and they put in another chest tube, just like they did on Easter morning. This time, however, instead of the 'amazing' 100 cc's that came out on Easter- FOUR HUNDRED AND FIFTY cc's came flooding out of Jack. Poor thing. His lung was SO compressed he was barely able to breathe. We are now up to 600. So obviously, he is feeling much better. (Aside from the fact that he has the chest tube curled up in his chest..)

After that procedure he fell asleep and has been sleeping for about 4 hours. He is pretty wiped out. They have him on more diuretic's, morphine for pain, and about 2 litres of O2. His sat's are just ok, but should raise as the fluid drains. His blood tests came back showing good, protein, electrolyte and potassium levels, so that is very reassuring. Although with the new diuretic's his electrolyte level is going to be shot down again.

We are home- to get a good rest for tomorrow. We will most likely move up to the floor and wait for the chest tube to do its work up there. It's kind of like last Sunday all over again.

This is very common with the Fontan. They see it all the time. Sometimes it happens 3 times. We are hoping it won't of course, but to put peoples minds at ease (particularly other heart mom's who are awaiting the Fontan..) this is a common occurence after this particular surgery. The body is getting used to the NEW OBJECT that has been plugged in to it and it's "weeping" all this fluid as it does so.

So yes, it is a huge bummer. But Jack was hurting pretty bad there for a bit, and I'm glad we figured it out and took care of it.

We'll keep everyone updated. Obviously, I was "anxious" for a reason, and I'm glad I didn't "relax" so we could recognize that something wasn't right..

Sunday, April 19, 2009

Big Pimpin'



Back to his old tricks.

Friday, April 17, 2009

O2, to the rescue.

Follow the oxygen tube to find Jack..

Here's a big hint.


I suppose it's good that oxygen is getting in there SOMEHOW.

It is very nice to be home-- it is alot like the hospital, but more comfortable. I need to be at Jack's side CONSTANTLY. Or he has a panic attack. And if I leave the room (even to visit the bathroom) he walks till the O2 line runs out of slack, then stands there crying till I come back. He seems to be very, very sensitive and has a little separation anxiety. I'm hoping this passes...(please God, let it pass..)

Other than his more frequent crying, and hormonal-seeming outbursts, he is doing very well. We've played Rockband, trains, marbles, colors and many other things. He is happy to be here, still hesitant of his condition, but much better than at the hospital.

He is also protective of his incision. We got word that he could take a shallow bath, and he said "No! I'll get my stickers wet!" and after we promised we wouldn't get them wet, he was ok with it. As long as I stay on top of his pain medication he is comfortable, but it is obvious that when he wakes up he is hurting. So soon he will heal...and feel all better.

Thanks everyone for your support. And the meals...they are excellent.

Wednesday, April 15, 2009

My boy is home. And so is his fixed Heart.

Pictures from the Journey..











Mission completion!

Wednesday, April 8, 2009

Update

For recent update go HERE.

Tuesday, April 7, 2009

Pre-Op prepped.

We had a smooth pre-op morning. Jack had an x-ray, had his heart listened to, and had his blood drawn. Then he was tagged multiple times so his identity will never be confused, and if he loses his ID tags, we will have to RE-admit him and have his blood drawn again. So we'll rely on the one they glued to his back that he can't reach...

We had a fun day at the Zoo, then headed home for a nap. He'll be having some friends and family over to visit tonight, and he'll receive a blessing, then we will hopefully get a good night sleep- and head out tomorrow morning at 6:00.

Onward we go.

Tomorrow- I will be updating throughout the day, but mainly to THIS blog, as to keep the upbeat happiness alive on our "family blog". So when you come here to check on the updates throughout surgery and recovery, you will most likely be led HERE.

Monday, April 6, 2009

Sunday, April 5, 2009

Early Easter

This is mainly going to be a photo gallery post. We had Easter early for Jack, we did eggs, and then rolled them. (If you don't know what that means, I'll explain later.)



























Thursday, April 2, 2009

Slight Hiccup-

Surgery is postponed, only a day. The PICU is full (which is never a good thing..) and they needed to push us to Wednesday. So April 8th, pre-op on the 7th.