Fun Friday...(as it can be!)

The day started bright and early...with IV lasix and lots of pee! And a walk bright and early! The xray showed NO FLUID...but we know how that goes! I don't think they'll let us go until it's clear for a week! They don't want to see us come back! At 10:00 we headed down to the playroom to choose a Halloween costume. When we arrived...I was emotionally overwhelmed. The playroom had been transformed into a costume shop...divided by sizes. And these weren't cheesy...quite the opposite. There was Buzz Lightyear, Spiderman, High School Musical...and a RED PIT CREW COSTUME! Perfect for McQueen Racing team! Tanner got a bit overwhelmed at the crowd...but once outside...he loved the costume. So we went back to the room and he played by the window until lunchtime. Meanwhile, he has learned how to open all the garbage cans in the hallway using his foot. Nice, Huh? Pretty soon he'll be running around here ( WITH HIS DRAIN ) taking care of everyone else! We got away with spaghetti for lunch (without anyone changing our selections...what a nightmare that has been. I thought we were over this until dinner came with no turkey sandwich) ANYWAY...I had to rush him through eating to make it back to the playroom for trick-or-treating ... but he INSISTED on finishing ALL his lunch. Yes, the old Tanner is back. Now if he can just put some weight back on without draining! Once downstairs, we had a helper assigned to us (Mr. Incredible) and off we went to various offices and nurses stations where he got little toys and a few pieces of candy. He was a bit shy...but enjoyed walking around. We came back and played with the toys...and then Mommy needed a break! We watched a bit of TV and we will be going back to the playroom tonight. Under the circumstances...it was a wonderful day. Mark and the kids are coming tomorrow...we'll see how long it takes them to get here with the Bay Bridge being closed!

Trick or Treat UCSF style...

Heading downstairs to the playroom for Trick-or-Treating!


Waiting to begin...so excited!


We had "Mr. Incredible" as a helper!


A new green bug...see it on the window?


Musical pipe...whee...what a sound!

BINGO movie

Thursday means BINGO!

So after all our good news for Monday and Tuesday...Wednesday's Xray had a little fluid and today...even a bit more. So in came Julie to flush...and out came 70ccs. I just can't believe that after 2 days it started up again. But, they say it's less yellow...and not as much as before. I was worried that I fed him too much fat...but they say I can stick to 25 grams (after "protesting yesterdays 38...ha! I was right...it was only 26!) Anyway, I don't care what the xray shows at this point, because the old Tanner is back! The MINUTE he wakes up, it's "Mom, lets go for a walk" and we went down to the playroom 3 times yesterday. We even did chalk drawings on the patio. He is eating up a storm...gotta keep the fat content down though. Today he was very excited for BINGO...and is finally relaxing in bed. HE IS WEARING ME OUT! Tomorrow we are looking forward to picking out a costume and then trick or treating! Should be lots of fun!

New and Old Xrays

This is Tanner's xray from today. See how clear the upper chest looks compared to a few weeks ago. See the drain tube floating in NOTHING? THIS IS GREAT! Day 2 and stlll NO FLUID! The doctors think it has something to do with the "milrinone" which helps relax blood vessels (like blood pressure meds) but is given through the IV. The plan is to start aspirin and plavix tomorrow and SLOWLY wean off the milrinone. They want to keeps us going in the positive direction!

Sneaky Mommy AND ... wait for it... good news?

Ahhhh...been missing the blog. After our "double procedure" day on Thursday, Friday morning came none too quick. Movin' on! They came and pulled out the last chest tube...but he still has the "pigtail" in his side. Mark and I were doing dances and singing crazy to distract Tanner, but he's smart enough to know what's going on AND SCREAMS OUT HIS LUNGS! I guess its good exercises, right? And the nurses don't seem to mind...so be it.

About noon on Friday, I SNUCK home. After the shocking news that we could be here another 2-3 weeks...I bombarded Mark with the news of a much needed Mommy break time. Even the nurses were practically pushing me out the door. Poor guy, I kind of sprung it on him...he was left with only a change of underware and hot jeans for 2 days! But he was a good sport about it as I left him in my dust! Tanner actually gave me a kiss goodbye...but did spend the weekend asking for me. BUT it was great BOY bonding time. I was practically hyperventilating walking through the parking garage and it was so overwhelming to see the familiar car...smells, kids car seats, garage opener...and it's true about "riding a bicycle"...I hadn't driven a car in 4 weeks but it was all natural until the phone rang and I almost answered it! Oops! Had to remind myself to keep my eyes on the road! I got home in time to pick up the kids from school and they were SO SURPRISED! We spent the next hour snuggling on the couch, had spaghetti for dinner, and then took Mackenzie to basketball practice. It felt really weird being home...it actually felt horrible being without Tanner and Mark...yuck! But it was WONDERFUL seeing, hugging, kissing, feeling, and EVERYTHING else with Mackenzie, Callahan, and Courtney. Mark has done AMAZING keeping the house and kids on schedule. Although, he can't believe I can wake up at 7:30 and have everyone ready and out the door for school at 8:15...and don't get me started on Courtney's hair! But the kids are handling all this so well...we are just SOOOO proud of them! Friday night I slept 12 hours...and Saturday night 10. I still don't feel quite recharged...but that time will come.

Mark did wonderful with Tanner. He had him out of bed, in the wagon, and sitting at the window most of Saturday and Sunday. They had lots of issues with IV's (why do these ALWAYS happen at night?) Tanner must have been poked with new IV's at least 6 times. They didn't work for very long because they were giving Tanner antibiotics and it is VERY rough on little veins. Mark also spoiled him with Easy Mac and Daddy noodles (top ramen), not exactly low in fat, but I think it jump-started Tanner's appetite. They also had to "flush" the "pigtail" each evening because the chylus is so thick and the tube is so small and thin that any pinch "stops" it up. They've taped Popsicle sticks to it...so it won't twist...what crazy things they come up with!

On Sunday, the kids and I went to Trader Joe's to shop for some low-fat snack options for Tanner at the hospital. We had fun finding cereal, popcorn, and lollipops! I had decided that we would come back to UCSF Sunday so Mackenzie, Callahan, and Courtney could spend a little time Tanner...he always perks up after their visits. The drive was beautiful and we saw lots of sailboats as we went over the Bay Bridge. Tanner was SO HAPPY to see us! Mark had to explain the new tricks to taking medication...and wanted to make sure I KEPT HIM UP AND MOVING! Tanner was actually VERY disappointed to get back into bed...but it was time for vitals and dinner. The pigtail hadn't drained much that afternoon, so once again they flushed the tube and another 70cc came out...quite a bit. The night was rough because Tanner had an IV that was very sore and I think after all the IV drama over the weekend...it really freaked him out! So he would scream each time a nurse came near the bed. I spent most of the night ssshhhhh and telling him it was okay!

Monday morning brought no drainage. Once again, this time Julie (our nurse practitioner) came with the water syringes to flush the tube but got nothing out! Disappointed, she sent for a chest xray BUT WHEN SHE REVIEWED IT...THERE WAS NO FLUID TO FLUSH OUT! It's the best xray Tanner has EVER TAKEN! Julie called me into the hallway to show it to me...you could see the drain tube curled up...and we all started crying! Even the nurses! BUT given Tanner's history, we are all joyful...but cautious. One day at a time here. Mark and I were a little hesitant about sharing our EXCITING news...but even if more fluid comes tomorrow, we still got that BEST XRAY! ITS POSSIBLE! Tanner will do it! Even the surgeon, Petros, came walking in the room this afternoon saying, "You know, I always come and give you bad news. But this time...that is the best xray I have seen Tanner take yet. We owe you this good news!" I actually jumped out of my chair and hugged him! And everytime I walked down the hallway...everyone had heard the news and we all did little happy dances. Now we know TANNER CAN DO IT! I actually give Mark all the credit for keeping Tanner moving this weekend.

We kept moving today after the FABULOUS news. Tanner actually WALKED all around the step-down unit, to the elevators, and down and around the 6th floor TWO TIMES! AND he ate a full roast beef sandwich, beef jerky (from Trader Joe's), rice, soup, chicken, and 3 lollipops all today. The nurse also took out that really sore IV so of course, I'm hoping for an easy night. Our luck has just got to be changing!

Double Surgery (procedure) Day

WOW...you talk about having the total hospital experience. Yesterdays ECHO and chest xray showed lots of accumulated fluid on Tanner's right side again. Too much for medication treatment. So at 11:00 this morning, they moved Tanner back to the ICU and put in another drain tube in his right side. 200cc's of fluid came out (that's A LOT) Now, the Nurse Practitioner called me out into the hallway this morning "to talk". First she asked how I was holding up...are you kidding me? Yesterday I had to leave the room and walk down the street to Starbucks because I was so frustrated with having to give Tanner yucky tasting medicine and then him working himself up to throw up. Time for mommy's time-out! But after an hour of gabbing on the phone and a nice ice-tea lemonade...I felt recharged. The good news is his lungs have FINALLY adjusted to the new blood flow. So the drainage is now just chylus. That's the fluid that comes from when the fatty tissue around the heart is nicked. And for some reason it's not draining, perhaps because there is so much of it or it's really thick. But for risk of infection, it had to come out. Tanner woke up and asked to play Bingo again! After the procedure it was time for a dressing change on the main incision site and drain tubes. But when they took off the tape and gauze, they found at the bottom of the wound had separated. So at 6:00pm, Tanner went BACK to the OR to have his incision site cleaned and re-sutured.

7:45pm...We just met with the surgeon, Petros, Dr. Azakai's partner. There was NO sign of infection and he cleaned the wound and sewed it up good and tight. He said he'd hate to be the doctor to take those stitches out! He put in extras to re enforce the wound so this doesn't happen again! Tanner's heart rate and blood pressure is a bit high, but after what he's been through today, who's wouldn't? I am sure mine has tripled since our "adventure" began!

And after all this...we were also told our stay could be extended another 2-3 weeks. I was hoping to be home for Halloween, but it looks dim. Honestly with all the procedures and pokes and ECHOS and chest xrays Tanner has been through, he comes out with a clear brain and happy attitude. What more could we ask for?