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?

4 Week Anniversary

I can't believe today it's been 4 weeks since Tanner's surgery. Incredible. No one could have predicted this. And what is possible to go wrong...has. Its just so frustrating because everything the doctor and nurses have told me to do...I've done. And it's funny how they make the orders...but I have to enforce them! For instance, Tanner is on a low fat diet. We've had trouble with the kitchen staff alternating meal selections for him...thinking he's eaten everything on the morning and afternoon tray. Then for dinner, they send up veggies and mashed potatoes! JEEZ...that's been today's trouble. But now I'm keeping track of how much and what he eats so they can base the fat and calorie count on what he actually consumes. I guess it gives me something to do in here! And now I have to limit Tanner's water intake because his sodium is low so they want him to have lots of Gatorade! So we just had a 15 minute scream fest of "I WANT WATER!" Ahh, life in the hospital.





So Tanner's fever was stumping the staff. His blood cultures showed no bacteria growing. But his white blood count jumped up to 22 indicating a bacterial infection. One night his fever was 103 and the next 102 degrees. They had already started giving antibiotics by IV, but they switched to a more powerful, wide range one last night. The next step was to do an ECHO (ultrasound of the heart) to see if there was any infection there (pix above). One of the Pediatric Cardiac Fellows came to do it instead of a technician. Tanner kept asking Alex, "what's that?" during the procedure (of course they had just given him morphine because they have to press on his incision site) Mark was here and we just kept holding our breath. BUT his heart LOOKS GREAT but they found another pocket of fluid. We were told sometimes fluid "hides" within scar tissue and the drain doesn't reach it. And because of the fever, Tanner hadn't been out of bed for 2 days. But Julie, our Nurse Practitioner, "stripped" the drain tubes a few times and out started to pour fluid! We were all so excited! He had small fever last night but by this morning, his white blood count was down to 20. Still high, but coming down, not going up! We are thankful for the little things! Tanner has definitely perked up today...we went for 2 wagon rides, the harvest festival, and sat by the window and played games.

Harvest Festival

On October 20, 2009 the Child Life program put on a Fall Harvest Festival for all the kids at UCSF! First you checked in, got a name tag and bag for your tickets. And the SFPD came and ran all the activities! It was a lot of fun and at each station you earned tickets and at the end you went to the prize room and got to "shop"! Fun, fun day! We were also lucky enough that the sunshine came after yesterday's downpour!





Tanner went "ducky fishing" with a net...and on the bottom was a number and that was how many tickets you received!


Joan helped spin the big wheel!

2 steps forward, 1 step back

Tanner got a fever yesterday. The family came for a GREAT visit...we all went to the playroom, sat outside on the patio, and then I took the big kids to the cafeteria for lunch. After that is when Tanner started feeling badly. He threw up liquid from his water and Gatorade...but still managed to eat a few noodles and rice for dinner. Gotta love the fat-free diet...just add MAJOR carbs! Anyway, his fever spiked to almost 103 degrees last night. The nurses kept checking on him...taking off blankets, taking temperature, and him screaming "I'm cold! I want water!" Another fun night. So this morning they took a chest xray and told me his white blood count had doubled over night...big sign of infection. The Nurse Practitioner told me she'd bet $100 it's his PIC line (deep IV line that goes to an artery verses a vein) so they just started him on antibiotics through that line and then plan to pull it later. They will have to then put in an IV line for medicines to go IN, but have to re-poke for lab draws. IV lines are one-way...that's the advantage to the PIC line. GOOD news is the drains are ALMOST done...but now we have this DUMB FEVER! 2 STEPS FORWARD, 1 STEP BACK!!!!!

Days Running Together

Courtney and Tanner making sticker art...


I've had a lot of fun posting pictures lately that I've forgotten to write! It's getting a bit harder because Tanner is feeling better and wants to read, play Candyland, or go to the playroom. "Mommy, are you listening to me?" is what I got this morning as I was loading the pictures. Ah yes, it will be quite a transition when we finally make it home! Our Nurse Practitioner Julie joked that Tanner will just go to college here...haha...and bless her heart...she went to Safeway last night to shop for some low-fat alternatives for Tanner. There is fatty tissue surrounding the heart and frequently those get nicked during surgery. It happened to Tanner during the last surgery and it happened again this time. It's call chylous (callous) and now we have to limit his fat intake to help dry up the draining. Like Tanner needs to be limited fat intake...he's lost so much weight already! But it's only for 6 weeks after surgery...and we've already put in 3 so...it shouldn't be too bad. I know it'll be a lot easier once we get out of here and I can shop around at Safeway and read labels and not rely on the cafeteria sending up plain, bland food that he WON"T EAT.

Mark brought Courtney for a visit yesterday...and had to bribe her because she HATED not being at Kindergarten! But we had a wonderful visit and she even snuggled in bed with Tanner. We took her to the playroom and she was just fascinated! It was a lot of fun. Mark and ALL the kids are coming tomorrow and I can't wait. Tanner is in GREAT spirits...singing and talking my ear off. This morning he got sick on some strawberries, and then again on lemon-lime soda so I mentioned it to the doctor. First words out of her mouth were, "has he pooped in awhile?" Funny thing he was TRYING this morning! She said it's the first thing that comes to mind when a patient throws up out of the blue. Sure enough, he pooped and finished his lunch of bland, boring, cooked chicken. I'm going to head downstairs and get him some Baked Lays that he loves so much and are only 2 grams of fat per serving!

Thursday Afternoon

After Daddy and Courtney left, we played BINGO! You turn the TV to the hospital channel and they are broadcasting from the playroom for kids who can't come. So we played for the first time and Tanner WON! He picked out a new pair of red binoculars! It was a really fun distraction for the evening!



Daddy reading Tanner the Thomas the Train book we brought back from the playroom.



The playroom is open from 10-12, 2-4, and 6-8 during the week. So Tanner wanted to go out again for the evening and we couldn't find a wagon. So he squeezed into the Red Car and scooted down the hall and into the elevators! Then we played puzzles and took a quick stroll to the outside patio. It's always good to get some fresh air each day!

Daddy and Courtney's Visit to the Playroom

Daddy and Tanner liked playing in the soapy water!



My musical Courtney found the wooden xylophone!



Joan, our child life coordinator, came to the playroom with us and is always bringing special toys to Tanner in his room when the playroom is closed! We were throwing balls up in the "attic" of the playroom!



Making pretty pictures with stamps.


Courtney and Tanner drawing on the chalkboard...Courntey had fun writing their names!

He's Out!

Tanner the Trooper made it through! Although I haven't heard from Dr. Azakai yet, I think he probably went home to bed, Tanner's out of surgery and doing great. He came out with 2 drains....and yucky RED fluid. Heart rate is lower and he's now sleeping comfortably with morphine. Our night nurse is familiar, she's taken care of Tanner quite a few nights previously, so it's good to have her watching him tonight. It's a full house tonight ... probably not few zzzz's to be had by me. Tanner's been very thirsty...trying to keep the water and ice chips going in slowly to avoid "spitting up". Going to be a long night...

Oh yeah...forgot to mention I had dinner in the bathroom tonight. Why, do you ask? Well I had run downstairs to get a chicken/mushroom quasadia and when I returned is when the doctors hit me with the "new procedure". Tanner had to now be NPO (nothing by mouth) but I was STARVING. So I headed out to the waiting room, but it was PACKED and I needed to be ALONE because I was sad about another drain...so I found the next best thing...the restroom! It was quiet, let me assure you! I let down the diaper changer, set up my Diet Coke, and chowed down! Not the ideal ambiance, but it did in a pinch! Ah, life in a hospital!

Day 21...Part 2

Wow. What a HORRIBLE day. And I DON'T mean the weather. How funny to see all the posts on Facebook about the rain and wind when it's just plain worse here. I honestly thought I would be making the best post ever...we were THISCLOSE to getting our walking papers. The Fluid stopped draining over the weekend, chest xray showed everything DRY inside so they pulled the tube yesterday at 2:00. This morning's xray showed TONS of fluid, so they did an ECHO and saw there was too much to try to treat with lasix. So our surgeon, Dr. Azakai, is inserting ANOTHER drain tube (number 5) in the OR as we speak...because the fluid is right around Tanner's heart. When Dr. Azakai came to talk to me this afternoon, he was surprised we were still here. His thoughts were the fluid just moved from Tanner's right side to the center of his chest. The GOOD news is the fluid is right on top, so there isn't a lot of other body parts to try to go around. One other doctor had offered to place the chest tube, but Dr. Azakai wanted to do it. I'm glad because he knows Tanner, and I feel best with him. Then our cardiologist came by and said Tanner's heart looks WONDERFUL, it's just this darn fluid making trouble. But once again, we are reassured that THIS HAPPENS. But once it stops, we're good to go. But who knows when that will be.

I've never gotten so many hugs in the hospital than today. Everyone feels bad for us and guess what? We finally get a spot in the Step-down unit and now have to move back to the overflow Cardiac ICU. What a bummer. The big, opened area, noisy room. Tanner should be out for the night...they are sedating him for the procedure and last time that lasted a few hours. He woke up, sipped some water, and went back to sleep. But who knows what will happen tonight. Everything changes in a milli-second here. Yesterday our nurse practitioner had told Mark maybe by the end of the week we'd be discharged. Today she told me to tell Mark NOT TO ASK HER AGAIN! This is the SECOND time she's had to give us the bad news of an extended stay.

I am ready to have a nervous breakdown. How can you help do you ask? PRAY THAT THIS WILL BE OVER SOON! I know many of you have offered to come and visit...but it's no fun here and I am always running up and down, back and forth for Tanner and listening to advise from the doctors and nurses. And our space is SO SMALL. (And I don't shower every day...gets kinda ripe...I hope the nurses think it's Tanner!) I appreciate all your texts, emails, voicemails, and facebook posts. I get them all...please forgive me for not answering. I am so drained and exhausted from the very thought of still being here. I get all my strength to keep it together from all of your encouragement. It is very difficult being away from "normalcy"...and my family most of all. Mark is trying to hold it together for the kids at home and keep the routine going. It sucks (OMG I must be losing it...I HATE that word!) but when those big brown eyes bat at me and say, "I love you Mommy"...you forget all else and give big hugs and kisses to our wonderful baby, Tanner. AND forget the screaming this afternoon for 2 hours; "I want ice! Get me ice! I'm hungry! Get me Daddy noodles! Go AWAY!" due to being NPO (no food or drinks) because of the procedure.

More to follow...

Day 21...3 weeks at UCSF

Nurse Lai let Tanner hook up his ECG sensors...heart rate, pulse, respiratory...



Tanner knows which color goes where! He's learning the ropes here!



One of the programs Child Life offers is "Book Buddies". Tanner LOVES having the volunteers come and read to him...and it gives me a chance to run to the bathroom, cafeteria, or just take a few power walks up and down the hallways!

Daisy and Dodger's New Home

Mark's job for the weekend was organizing the backyard and finding a new home for Daisy and Dodger. We had lots of fun with them as "chicks", but it's time for them to have a wide-opened space with LOTS of water. So Mark and the kids found a wonderful new home for them...and with other ducks! SNIFF! They're moving on!



Daddy and Callahan pack up Daisy and Dodger to move to a new home.



They found a quiet spot on the delta...water front property!



Let's check it out!



The water is cold!



Hey! New friends! Wait for us!

Weekends around here are really slow. That could be a good thing! Not a lot of poking, pushing, and testing. On Friday night, again due to staffing, we FINALLY got moved to the Cardiac Step-down unit. Yeah! One more step closer to home! But, it was at 10:30 at night! But again, we got to see one of Tanner's nurses from a previous visit and it was fun to see her! So we're in the semi-private room...sharing with one other patient. They got to go home today...so we'll have the room to ourselves for the night. Tanner has been very gung-ho about taking wagon rides...up and down the hallway...to the playroom to pick out new books...riding the elevator...and he INSISTS on walking by himself! His appetite is back and he's been EXTREMELY happy! Today the Blue Angels were flying over the Golden Gate Bridge, so the nurses ran in, unhooked Tanner and we watched out the windows. We got to see them a few times and then we took off for yet another wagon ride. I suggested they need some sort of track...you can only count the doors and windows so many times!!!

Tomorrow will be a big day. Time to check in on fluids and chest xrays. Mark is coming for the day...and the big kids are back at school.

Light is Fading

So yesterday after being tossed out of the private room for a infectious infant...okay, I'm over that!...Tanner's morning xray showed LOTS of fluid gathered right where they just took out the 2 chest tubes. So we had to stop all food/drinks and the doctors gave him LOTS of diuretics. BUT it didn't make a difference, so at 3:00, the surgeon and two nurses came to the bedside and put Tanner in a deep sleep and inserted another drain in his right side. I stayed until he went to sleep and then high-tailed it out of here and ran down to the cafeteria for a quick lunch. It only took 15 minutes...and 400 ccs of fluid came dumping out! Everyone was shocked! No wonder he wasn't feeling good for 2 days and lost his appetite. Good thing they put a tube back in...BUT it stalls our release date. Now we're looking at AT LEAST another week, if not two. Mark and the kids came for a quick visit today before heading back to school on Monday. So we're not sure how the visits will go because of the school schedule...Tanner and I went for a nice walk today around the 6th and 7th floors. The doctors have signed us off monitors for an hour each day to move around. Tanner still rides in the wagon because we have to bring our "drain box" with us. He's been real uncomfortable since they put back in the drain but has really enjoyed going to the playroom to pick out new books to read.

Yesterday and today I've been rushing back and forth to the window at the end of the hall to see the Blue Angels flying by. They've been practicing for this weekend's "Fleet Week" so it's been fun to see them!

Moved again!

We had a wonderful day with daddy! He came last night and then slept bedside with Tanner. I went and slept in the room reserved for ICU parents and instead of beeping moniters all night...I listened to someone snore all night! Yikes! Anyway, I'm blogging real quick from my phone because the honeymoon's over with the quiet, private room! We just got booted back to the loud, open, shared unit... Just part of our story!

Painting Pictures

Tanner took his new blood pressure medicine by mouth (after spitting out the first dose...little stinker) and got to paint with syringes!

Light at the end of the tunnel

You know, it's funny how exhausted I feel at the end of the day when all I've done is sit on my round rump all day! Jeez, at this rate I should be able to stay up all night! Our schedule has definitely shifted; Tanner's last dose of lasix comes at 9pm, so he's busy screaming "I have to go pee! I have to go pee" Mommy do it!" until 11pm. Then the peeing continues throughout the night, so Tanner and I have been sleeping until 8:30. So last night I decided to blog first thing this morning with a fresh start but as I was powering up the laptop...we got our moving call! Good thing...grass was begging to grow under our beds! HaHaHa! So out of the Pediatric ICU to back across the hall to the over-flow unit BUT we got the private room! Very quiet today. Very nice flat screen TV with cable. It's considered the "contagious" room...hopefully they "de-germed" it before we got here! I think we're up to 6 moves to date.

The exciting news is Tanner got his chest tubes out! They are only to stay in for 2 weeks due to increase risk of infection. The drainage has decreased dramatically, so they are upping the dose of lasix to help dry out that extra liquid. You can see in this morning's xray above the right side has a taller shadow than on the left. This is the fluid pushing on the lung so our job for the next few days is to get Tanner out of bed and moving! The more he expands his lungs...the faster the shadow will disappear. There is still a chance of having a chest tube put back in, but we (me and the doctors!) are keeping optimistic.

Another reason I didn't blog yesterday is I felt like I am going to be here forever. You know how you look forward to a special trip, but you can't envision yourself there until you're actually at that point in time? That's how I feel about home. Maybe I'm just trying to stay in the moment so I don't get disappointed or overly excited about anything. And being in the ICU, even with "privacy rules" you hear things. At least 2 children have died in there this week. One of our night nurses said, "their little spirits had to find a better body." Very saddening to hear when you're trying to nurse your baby back to health. But that same nurse loved seeing Tanner's baby photos and how happy and healthy he looked. We have just started talking to Tanner about going home. He never has cried to go...he wants Daddy to come stay with him. Mark actually is on his way for the night and all day tomorrow.

BUT there is light at the end of the tunnel! Tubes are coming out and they are starting to transition off the IV meds to oral. Baby steps...but one cardiologist said maybe we would be home by the weekend? I hate to mention that and cause mass disappointment, but I NEED SOMETHING TO LOOK FORWARD TO TOO!

Quiet Sunday

Boring, Boring, Boring Day. We watched movie after movie and went for a wagon ride. All the doctors seemed to take the day off. Must be nice. I want a day off too. Tanner just got his morphine and tylenol...so it's off to bed for us. Tomorrow will be a big day. Another nurse was asking our nurse who she was taking care of, and she said, "the 7 east kid?" (meaning the cardiac unit) And the other nurse says, "Oh yeah. The kid who has been everywhere but!" YUP! Everyone knows who we are!

On the Road Again!

Tanner went for a wagon ride today! We went to the playroom but it was closed, but they let us pick out a "Blue's Clues" book to read at our bedside.


Nothing like a little soda to lift the spirits! And make you pee!


Gotta give him credit for trying it...turkey stew and rice...but then I had to make him Easy Mac...

ON THE ROAD AGAIN????
Nothing like a little wagon ride the lift the spirits. Mark came by himself today and it was fun to have him all alone. I just have to give him so much credit too...taking on the "mommy role"...3 ACTIVE kids...24 hours a day...bringing us necessities...what a guy! We had a fun time throwing around a ball (wadded up napkin) and coloring. Before our wagon ride, they removed his oxygen tubes! Little bits removed at a time! He's still draining quite a bit...and they are keeping an eye on it for the next few days. If it doesn't stop...they may have to do another Catheter procedure to find out what is creating the extra pressure...hence the extra fluid. Never a dull moment around here!

My shower was very nice today. I remembered to bring some towels...but for ole times sake...I dried (exfoliated) my arms with paper towels. Gotta keep it fresh around here too!

But the wagon ride was not the only trip we made today. About 2:00...the doctor came down and said, "I am so sorry...but we have to move you guys again. We have a part of the hospital you haven't seen yet!" Ha! Ha! Ha! They were closing this part of the Pediatric ICU overflow unit and moving us to the main ICU which only had 2 out of 10 beds full (all comes down to money!) At this point...I kind of expect to be moved in the middle of the night! The charge nurse from the Pediatric Cardiac ICU almost came to tears. "You guys don't understand how much it means you being so flexible...its been so hard shifting around beds...the good news is Tanner is the most stable!" Honestly, what else am I supposed to do? Throw a temper tantrum? Rant and rave? Nope...I get excited because we're going to a part of the hospital we haven't been before! And by being so "flexible", we got a room with a view!

So it was a pretty good day UNTIL Mark called me on his way home traveling over the Bay Bridge announcing HE GOT A PARKING TICKET! He had found a parking spot on the street, and since it was Saturday, he assumed he didn't have to feed the meter! And even confirmed it with the guy parking next to him! The worst part... he missed the parking meterman by 3 minutes!

Cutie Pie

My Sleeping Beauty


Even with all those cords...he still manages to eat his Easy Mac!

Just call me DRAMA QUEEN

It's a good thing I didn't blog this morning. This entry would sound depressing, frustrating, maddening, and hopeless. This is all after only 4 hours of sleep. Ahhhh! When the nurses checked the Xray film, the PICC line WAS STILL POINTING UP! So they had to peel back the tape, pull out the line another 3 cms! Then, ANOTHER XRAY! That makes 4 today. I swear when we get home, we're gonna glow! Then, after our 10 o'clock meds, Tanner was extremely restless and overly tired. "I'm thirsty, I want my gameboy, I'm hungry" MOMMY's DONE! Then he dosed off a bit and I turned on the computer to play a few games. Well, that didn't set too well with the king. He started screaming, "Mommy go to sleep! Mommy go to sleep!" Hospital life...good thing everything's locked up. Then about 4:30 am, the nurse woke me and told me the PICC line had clotted and they had to give some meds to help dissolve it. I also noticed his Oxygen levels were in the mid 80's (last 2 days...mid 90's) and the monitor keep beeping; all night, on and off, loud and soft, open and close door, nurses in and out...you get the picture. But when the respiratory therapist came in, she replaced Tanner's finger monitor and his stats jumped right back up to the mid 90's. See? No sleep and I'm thinking Tanner's made a turn for the worst. I gotta get me some zzzzzz's. The PICC line blockage is gone and is working great. It's in his middle inner elbow and doesn't seem to bother him at all. BUT at 8:00 am, a nurse and later a doctor come in and drop the bomb: "YOU'RE MOVING BACK DOWNSTAIRS" I almost burst out crying right there. Remember one of the earlier posts? Loud noises, moaning kids (still here) stinky bathroom (just dumping room, really) The dungeon? Well, here we are. BUT one good thing, we're in the corner now with curtains all around us AND the window. I can look out and see San Fransisco Bay. And, as our first boy nurse Erik said, we're on "bedrock" so it's the safest place to be! I guess as opposed to fault lines! Gotta look for the good in everything, right?

So right before we moved again, they came in and removed Tanner's left chest tube. That sucker was long! The worst part was the nurse had to squeeze the skin while the doctor tied the stitch. One down, two to go. AND, one step closer to home! Whoo Hoot! The doctor also explained to me that earlier in the week, Tanner's Xray showed 800 ccs of fluid in his lower left side (I always thought xrays were just for bones...kind of cool, huh?) This morning, it was down to 200 ccs. Everything is right on track. AND, the doctor said (after apologizing for having to banish us again to the 6th floor) it's a good sign we are the ones to move...Tanner is the most stable!

And you thought my day was done, right! Well, tricks on you! No way could there be any more DRAMA, right? I swear, it just follows me around! Mark and the kids came today right in time to help us move. So they grabbed all our stuff and rode down in the public elevator to the 6th floor. I went with the 2 nurses, Tanner, and the big medical bed for the service elevators. Well, I didn't get the "down" button pressed fast enough so we ended up stopping on several floors. The doors would open, show us all stuffed in, the nurse would apologize to the people waiting, and then we'd get dirty looks! Amazing how Tanner's cranky mood seemed to effect everyone in the hospital! HeeHee! Anyway, on one of our stops, the doors open and we see 2 deputies holding a man dressed in an orange jumpsuit and leg and arm handcuffs! Something I didn't need to see today! The doors shut and we all just shook our heads. Never know what you're going to see in San Fransisco.

So when Mark and the kids come to visit, I run and take my shower and then the older kids and I run down to the cafeteria for lunch. They think it's the biggest treat ever. So I run down to the shower...turn it extra hot cuz I'm extra stinky (!) Just as I finished de-stinkying myself, I turned off the water...and realized I DIDN'T GRAB ANY TOWELS!!! The linen closet is out in the hall and around the corner. As the steam of my hot shower evaporated around me, I seriously considered opening the door and calling for anyone to help. Decided against this, because as you all know, I'm very modest (Biggest line of BS I've got today! HeeHee) So I grabbed my old sweatshirt, yes the stinky one, laid it on the floor and proceeded to dry myself off with 3X6 inch square paper towels. Those suckers were scratchy, but sure were absorbent! A little extra exfoliating is good for the skin!

Well, enough adventures for us today. Tanner is finally napping...and maybe I should to. My mom is coming to watch the kids on Saturday so Mark can come see us for more than 2 hours. Tanner cried when he left today...me too. This is the longest we've ever been apart. So I am really looking forward to tomorrow. And he can be here to help remind me to grab towels for the shower.

Fun Friday!

Tanner coloring a McQueen picture..."stop, mom!"


One of the nurses brought a sponge toothbrush cuz I forgot one for Tanner!


The visits get better and better!


Courtney helped Tanner play on Nick Jr. com...it was so fun to watch!

Cranky

Boy oh Boy. Cranky morning turned into cranky afternoon and cranky evening! But one of the doctors said that was good, as Tanner was telling her to "go away!" Good thing thing everyone takes it light hearted...cuz once we get our of here...no RUDE BOYS for me! Today they had to put in a PICC line. This is longer than an IV and extends from the inner-elbow all the way up the shoulder and into the ribcage into an artery. Well, they gave Tanner an extra dose of morphine and something else to make him sleepy but he cried anyway. It was awful. No wonder he tells everyone to "go away!" He gets poked at least once a day. This PICC line is for medicine AND drawing blood for tests. So hopefully that will be the last poke. So they do a chest xray to make sure the line isn't stopped in the neck...and what do you know? IT WAS! Could of seen that from a mile away! So the PICC nurse had to come back and pull the line out and leave it around the shoulder area...at this point I couldn't stand to have him look at me with tears, so I took a bathroom break...and found the furthest restroom on the floor and took my time. But he perked up a bit and we played with his mini-McQueen cars for awhile and read a search-in-find book with a flashlight. Lots of stimulation tonight. Should sleep pretty good after 9:00 meds.

Old faces

Last night was pretty quiet. I got to sleep in a small reclining rocking chair. I just leaned my pillow up against Tanner's bed and it wasn't too bad! We slept until 7:30! We're waiting to see what our plan of attack is today. Tanner is already sitting in a chair eating some bacon and drinking chocolate milk. Although he is one cranky monster this morning! Oh well, he's entitled! Our nurse today is Megan, who on our last 2 visits (surgeries) was our nurse practitioner. So she was glad to see us again, asked about the family, and really liked seeing how much Tanner had grown. Then, a few days ago, Sam, a nurse in the step-down unit, came to say hello too! She remembered us from our previous trips too! Hopefully we'll get to see her again some time next week.