Forgotten UCSF story

I had completely forgotten this funny (now...not then!) story that happened on that Monday before Thanksgiving. Mark mentioned it in our "Thank you" poem...the leaky ceiling. I had arrived back at UCSF for the switch after the weekend to see Mark and Tanner playing the XBOX. So Tanner's new spot was the chair Mark and I had been sleeping/living in and Mark had been sitting on Tanner's bed. So while Tanner was showing me how he played his game...I changed his pillowcases and switched his blankies for Mark to take home and wash. Mark was busy packing things to go home and when I was done, I sat on Tanner's bed (since he was busy "driving McQueen Cars on the XBOX game...go figure...more McQueen stuff...)and leaned back, threw up my arm and it landed on WET PILLOW. Now, at this point, I could have walked out of the bathroom with toilet paper on my shoe and out my pants and never noticed (or cared!) So I questioned myself if I had just brought and then put on a wet pillowcase. Hey, it happens, right? So while I'm questioning my sanity, a nurse comes in to do something "nursey" (I just can't remember...I'm trying to block it all out now! Seriously, I read back and cringe at some of the days we had...) And I'm telling her about the wet pillowcases when she looks up and SEES WATER DRIPPING FROM THE CEILING! We all started laughing because this would ONLY happen to Tanner. One more outrageous experience. We were kind of wondering about the room above us...leaking water? Uh oh! So as Mark headed home to beat traffic and pick up the kids from school, the maintance crew arrived. Apparently, there was a water pipe in the ceiling that had been leaking before and it was only fixed with a "bandaid". So Tanner and I headed to the playroom while it was being repaired...and 90 minutes later, the leak was fixed and we were getting word that we were getting released in 2 days. Only part of the Wieland Adventure!

Thank you, Thank you

OMG...how fun to have the blog linked to Facebook now. It's supposed to notify "fans" with new posts automatically...hopefully it'll work! I tried to sit down yesterday and write my thank you notes to friends and family who have sent food and money to us during the holidays...so overwhelmingly grateful...but it was constant "mom, mom, mom" and Mark yelling, "come see this..." Jeez! And if I didn't run right up to see what Mark was hanging...it might have ended up upside-down or in the wrong room! PLEASE be patient with me...I am sooooo thankful for all the wonderful gifts for our family...and I WILL get those notes out! Thank you from the bottom of our hearts for continuing to support us!



Summer 2006

Thank You to UCSF Staff

Here is the Thank You we made for the INCREDIBLE staff that took care of Tanner:



It's hard to express the emotions we had as the days turned into weeks.

We felt we were the luckiest family until the ceiling began to leak.

The screaming and crying, and fear of blue gloves when someone came into the room...

Getting out of 7 North would never have come too soon.

After 65 days, Tanner's okay to leave with only one tube,

We finished IV's, popped a few pills, and now we can say THANK YOU!

This Year For Christmas

A Family Poem read at the Wieland Family Christmas Party, December 19, 2009


THIS YEAR FOR CHRISTMAS

This year for Christmas,
Tanner is healthy and fine...
And we are happy to say,
Goodbye 2009!

AND...This year for Christmas,
We reflect and think back...
About families like ours,
WHO GOT TOTALLY 'JACKED!!!!

BUT...This year for Christmas,
Things are a little bit tight...
We did all that we could,
To do everything right.

EVEN THOUGH...This year for Christmas,
We cashed out, begged, and borrowed.
And stole a few things,
We promise to pay back tomorrow.

SO...This year for Christmas,
At Uncle Greg and Aunt Pami's,
ALL WE COULD GIVE...
ARE UGLY HOSPITAL JAMMIES!!!!

Happy, Happy Holiday

Sad to say, this is the first time in 3 weeks I've been able to sit down at the computer to blog. What a fabulous Christmas we had. Tanner being home was the best gift we could have ever asked for. There were some days at UCSF I doubted it would ever happen. It's scary when I think back to all those days in the hospital; the poking, crying (both of us!) and how we made it through. Never an experience I want to repeat. And as hard as we've worked to be back to normal...we all get those flashbacks...for example, Tanner cut his foot yesterday and SCREAMED bloody murder putting on a bandaid because he saw the blood. Not to mention, I got light headed too... But it's the constant reminder of taking things slow, one day at a time and just hoping for the best. He even got a fever night before last...and I panicked thinking we would be back at UCSF...but it broke naturally and Tanner was eating, running, pooping like normal the next day! His own body took care of the germ...hopefully...He still needs to go to the pediatrician for a well check. Our cardiology appointment on the 21st went PERFECT...no drainage, low blood pressure, and 96 O2 levels. PERFECT. Now we don't have to go back for 3 months.

We put away our Christmas tree today, because if you even gave a sideway glance to it...it shed about 800 needles. Time to go. But the house is in nice order. Mark and I spent Christmas Eve hanging decorations and shelves and got the last boxes OUT. We only have family photos left to hang! Yipee! It FINALLY feels like home! Mark's parents bought us the Wii for Christmas and My mom got us the Wii fit, so we've been having LOTS of FUN together as a family bowling, exercising, and laughing. Courtney is amazing at bowling, it's either a strike or spare each turn! And Tanner has a cute throw...and loves doing the down-hill ski slope. So cute to watch. Mackenzie and Callahan are working up a sweat and counting calories...then ask Mark for ice-cream. Gotta love them!

Amazing Day

Today was Tanner's PICC-line change appointment. Tanner and I headed to the city at 6am to fight the morning commute and try to arrive at UCSF by 9am. Surprisingly, traffic was relatively light UNTIL we hit the Bay Bridge. Then it was stop and go at the toll plaza AND the metering lights. Tanner slept right through until then...which was great because he was NPO (no food or liquid) since midnight. He loves to count the boats...and this morning he saw an airplane! FUN! Now, flashback to last night while we were decorating the tree...my cell phone rings and it's an unknown number. I let it go to voicemail with the intentions of listening later. Well, Mackenzie had basketball practice and when we got home, it was bed, books, and bedtime...and honestly I just forgot to check my messages. So while sitting at the Bay Bridge this morning, I rang into my voicemail and listened to Tanner's nurse practitioner tell me that the procedure was a "98% go" for today...and she'd call me later in the morning! AHHHH! I had already left! FORTUNATELY, she called back 10 minutes later and assured me the line change was a go. Sure will teach me to listen to my voicemail messages PRONTO! Tanner was a bit apprehensive about having to go into the hospital (instead of the clinic across the street) but he did really well. Familiar faces kept asking us with worried looks "why are you here?" and I had to reassure them it was just a line change and we were back out in a few hours (hopefully!). Everyone commented on how good Tanner looked...some even thought his cheeks looked more full! So the nurse is getting Tanner hooked up to the monitors and Julie (NP) is getting supplies for the new PICC line when Petros the surgeon came in with a HUGE GRIN on his face and announced, "Dr. Azakai and I were just talking, and we are going to pull the PICC line and have Tanner take PO (oral) antibiotics for the remaining two weeks." My mouth dropped open, and I just grinned back. I couldn't believe it. I was speechless. Our conservative surgeon was giving us some slack! So I told him as he was leaving, "You just gave us the best Xmas gift EVER!" It was so amazing how the fabulous news traveled around the ICU unit too. Nurses and doctors kept coming in with HUGE smiles and congratulating us. You could just feel the excitement in the air. Julie came back in and I couldn't even talk...and started to tear up. She told me, "This is HUGE and don't start crying or I will too!" They still gave Tanner a bit of sedation to take out the 2 stitches on his chest wound and then pulled of the tape and removed the tiny PICC-line tube. The whole procedure took about 10 minutes. And Tanner did very well...just a few, "do it slow!" and "OUCH!" It's almost bitter sweet because it's a HUGE step towards recovery, yet we're losing our "hospital family". We still have a cardiology appointment on the 21st, which marks the last day of antibiotics and a well-check just before the holidays. As I watch Tanner run around tonight...he seems a bit naked without his PICC-tube flopping around...but I got the go-ahead for the showers and he's getting scrubbed down tonight! And our first uninterrupted night of sleep! It'll probably take Mark and I a few nights to get used to it!

Fantasy Flight to the North Pole

As tough as our 9 week stay was at UCSF, we were so fortunate to be invited to a special event...the SFO Fantasy Flight from United Airlines - a trip to the NORTH POLE! Saturday, December 5th, we drove to SFO and were treated to a reception of clowns, snacks, royalty, fire fighters, police officers, and many volunteers all dedicated to make the day special for the kids! We had special boarding passes and Tanner received a special picture ID for the flight. Once on board, we found our seats and Tanner had a personalized Santa Hat and a window seat! It was so special! Everyone was so helpful and friendly!



They served us sandwiches, grapes, chips, and cookies...and half-way through the flight, it was announced the North Pole was too fogged in that we couldn't land! So Santa made a special visit on our plane! The kids were very excited! We also had the opportunity to walk around the plane...and to the upper deck of first class seats! Tanner even used the tiny potty!



As if the day wasn't special enough, we also met our hospital roommate family! The boys were so excited to see each other again...and we got to catch up. When we landed, the gate was decorated with trains and balloons...and the event ended with volunteers giving the kids each a goodie bag, a Target gift card, and a Chevron Gas card for the parents! It was truly a magical day for our family. Mark realized it was the first time since September we had all been in the car together as a family. A special day we'll remember forever!

Tanner's First Week at Home

It's been quite a week. Thanksgiving was wonderful with the entire family! We celebrated with having Tanner home! Yipee! He was so excited about the new house and his new room...spreading out his cars and driving them all over. The only thing he DID struggle with was coming DOWN the stairs...obviously he had been in bed for 65 days and lost his muscle mass! But amazingly enough...after just a week at home, he's running around and climbing down the stairs PERFECTLY! But on the Sunday after Thanksgiving, we ended up in the ER at Kaiser in Antioch. The day before, Mark and I noticed a rash on Tanner's back and tummy. It wasn't raised, but Tanner started scratching Sunday morning so off we went. They were concerned about an allergic reaction to the antibiotics OR plavix...so they stopped the plavix because Tanner had been on the antibiotics for 3 weeks in the hospital. We started benedryl to help the itching. Then Monday morning we already had a scheduled appointment with our Cardiology Dr. at UCSF so Tanner and I headed back to the city! When we arrived, it was like a reunion! Everyone stopped into to see us...2 cardiologists, 2 nurse practitioners and Petros the surgeon...it was fun to show off how well Tanner looked. Tanner's number's were perfect (Oxygen, blood pressure) but they still didn't know about the rash. So they wanted to keep Tanner off the plavix (super blood thinner) and because his numbers were so high, he really doesn't need it right now...but to come back Wednesday to be re-checked for the rash. So back to UCSF we went Wednesday morning...stayed for 15 minutes...and then went BACK AGAIN FRIDAY! This time, the traffic was horrible at the Bay Bridge, took us over 2 hours to get there...and our appointment was ONLY 5 MINUTES! Oh well, as long as we're home sleeping in our own beds. Tanner's rash virtually disappeared by Thursday and he was eating better and had more energy. The consensus was maybe just a virus...since there was no fever...but he's feeling so GOOD! Our next trip back to UCSF is this Wednesday to have the PICC line replaced and 2 stitches removed from the wound site (which looks super healed) - hopefully just a day trip. Mark is still home from work seeing as I've been back and forth to the city...and with the other kids still in school...it's impossible for just one to do it all. It's also been good healing time for our family!

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Mackenzie Playing Basketball

Here is Mackenzie playing in her FIRST basketball game! She's an excellent defense player! She is number 15...

Video of Tanner Leaving UCSF

Here is a quick video of Tanner saying "Good-bye" to his "home" of 65 days!

Happy Thanksgiving!

This has to be the best Thanksgivings of them all. Last week I was losing hope. I felt despair and grief that Tanner would NEVER come home. I saw bars on every window at the hospital. I ignored my birthday because our family wasn't together. I was actually going to give up blogging because I couldn't find anymore good in the situation.. But yesterday, due to our fabulous nurse Practitioner Laura, we left UCSF WITH TANNER! I FINALLY got to see the hospital in my rear-view mirror! Whew! What a roller coaster week! Mark had been with Tanner since last Tuesday so we were ready for the trade-off (he had last minute "dealings" with the old house to finish) and the doctors had told him Tanner would NOT be home for Thanksgiving because the home nurse wouldn't be available until next Monday. We were devastated that Tanner was perfectly healthy but couldn't come home because of staffing difficulties! So when I arrived Tuesday, my first question was, could I have friends that were RNs help with Tanner's meds and dressing changes over the weekend? And immediately Laura started digging for answers. Mark left with the news that Tanner's antibiotics would be ready by Friday and we would be taught by the pharmacy how to use the pump. So Tanner and I left for the afternoon session of the playroom. He was showing me how he could jump around in the ball pit when Laura called me out into the hallway. With her was the charge-nurse case worker and they told me of the new plan. (It STILL seems surreal). Tanners meds and pump were to be delivered to the hospital Wednesday by 3:00. A nurse from Crescent Health Care would come and teach us how to use them. The home care nurse would come Monday morning with the next week's supplies and do a dressing change on the PICC line. Tanner was scheduled for a cardiology appointment on Monday, November 30th. And once our teaching was done...WE COULD GO HOME!!!!! I jumped up and down and hugged each of them several times!! Mark had barely gotten home when I called him and asked him "how'd you like to have Turkey in Brentwood!". He thought I was teasing! Its just been absolutely like a dream ever since. ALL our prayers were FINALLY answered! We will still have to go back to UCSF for a new PICC line December 11 but we are HOME! And even one night at home is worth it! Mark's parents are here today making us a wonderful turkey dinner while Mark and I sort through boxes and assemble beds. And the magical voices of 4 children playing upstairs! Happy Thanksgiving!

OMG...is this it?

Mark traded with me on Tuesday...he was physically exhausted from moving and I was emotionally exhausted from the hospital! I have been busy busy unpacking! But it sure is a lot easier than packing (and enjoyable!). Mark has spent the last few days running (yes, running!) Around behind Tanner....up and down the hallways and they have become regulars at the playroom! Here on the homefront, the kids have had minimum days due to parent/teacher conferences...so I've been back and forth to school each day. All the kids are doing very well...ESPECIALLY due to the circumstances...I'm so proud of them! Tanner's wound check was today...and FINALLY, it looks awesome! The surgeon was so confident, he took off the suction, no wet packing, and now the site ONLY has 2 loose stitches and a gauze covering! He actually told Mark he felt real bad Tanner was still in the hospital and they are working extremely hard to have him home BEFORE Thanksgiving! What a birthday present for me! I'm not celebrating until Tanner is home...and therefore, I am STILL 25! HeeHee! So the next step is arranging home care. A nurse will come to check-in with Tanner (wound and antibiotics) every other day...so that's great news! More to follow....

Week 8 and 1 day

I am very tired. It has been an emotionally exhausting day. Tanner went to the ICU at 11am to have his wound inspected. Anesthesia was there and put him out. The wound looks good, but still not healed enough for stitches. So back on went the suction cup to Tanner's tummy. While he was "sleeping", they did a dressing change on his PIC line and gave him a bath! The nurses joked it was his "spa day"! Now it was funny until Tanner woke up. He is inconsolable, mad, mean, (and you get the idea). It continues for about 2 hours and then he settles down. He actually looked at me and said, "mom, can we change the bandaid later?". He had no memory of the procedure. Wish I could have some of that too! But then the tantrums, screaming, and kicking kept showing it's ugly head throughout the afternoon and evening. The nurses try to help...but we just have to ride it out. Its just getting harder and harder for both of us. And they are going to check the wound on Thursday, so that means back to the ICU...I'm going to let Mark handle this one...my ICU experience ended with one Nurse Practitioner, who is the surgeons right hand, tell me her goal is to have Tanner home by Xmas. What a great thought.

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Tanner being silly with his rubber bracelets!

Friday ending week 7

So yesterday when I signed the consent form for the suction/dressing change, they said Tanner would go down first thing, between 8 and 9 am. That sounded real good because after midnight, nothing to eat or drink. And Tanner gets to be a real bear when he's hungry! But later, the nurse came back an hour later and said anesthesia had meetings so Tanner wouldn't go down until 10am. Its so interesting to me how they "lay down the law" but they let ME be the enforcer! They aren't here to hear him scream on and on for chocolate milk at 2am! Anyway, at 6:45am the nurse woke me and said "the OR just called and they are coming for Tanner". So I was excited because they were early! No more stalling food and drink! So we headed down to the 4th floor, Tanner gets a little sedation and then the phone rings for our nurse. Its the surgeon Petros who says Tanner was supposed to be in the OR at 10am!!! What a fiasco! Anyway, somehow it worked out and the procedure went really quick. The wound looks clean, its healing nicely, but they are keeping the suction on until Monday. The bummer is, the culture from the cartilage came back positive for bacteria. This means 6 weeks of antibiotics because there isn't a lot of blood flow in bones like tissue, so they have to go longer on meds. Now, good news is the antibiotics they had already started IS compatible for killing the bacteria! Also, they do send home patients with IV antibiotics. It's just another waiting game (that I really HATE playing) for the wound to heal. We're here at least another week. Mark is home packing the house, moving boxes, and shuffling the kids around this weekend. I think we'll do the ole' switch-er-roo Monday after the next suction/dressing change.

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Tanner checking out his smelly toes!

Thursday

So today has been relatively quiet, no procedures, no xray, no pokes...JUST BINGO! We came back yesterday to our same spot (sans beautiful Tanner artwork) where our fun family roommates of 4 weeks were waiting! Their 6 year-old son also had the Fontan surgery and the boys AND parents have enjoyed their time together. Thank goodness we met...it makes the "hurry up and wait" a little easier. Tomorrow morning Tanner heads back to the OR and then we will know how much longer he has stay (although we know how that changes!). There was a little bit of infection so he'll be on antibiotics for at least 2 weeks but they will begin that orally on Sunday.

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My broken shoe...

Another UGH day

I wish I could be writing happy news. I am tired of blogging about depressing things! We keep hoping things will turn around...and hoping, and hoping! My day began at 5:30am...and then Mark and I had to keep Tanner distracted because he couldn't eat or drink until the 10:00 procedure that didn't begin until 12:30. We were pacing the hallways! The procedure only lasted an hour, and the surgeon didn't find anymore infection. In fact, the wound looked way better today than yesterday. But it did go pretty deep, so they put a sponge and suction over the top of the area to keep it clean. They also took cultures of the area so depending on the outcome will be the course of antibiotics (anywhere from 2 to 6 weeks). Then on Friday, the 2 surgeons will take off the suction and sponge and see how well the area has healed. They really think Tanner's body just hasn't had a chance to heal properly from all the surgeries! So we are back in the ICU for the night. Now, while we were in the family waiting room, the nurses went into our "step-down" space, took down all of Tanner's artwork we had been collecting on the walls, stripped his bed, and put all the rest of our personal belongings in a wagon and stored then in the nurses break room. When I asked the charge nurse why, she said someone was coming from the ICU...and I said what about Tanner tomorrow? She told me hopefully someone will be discharged. That just set me off! First of all, we were DOWN the hall and we could have moved ourselves...and obviously seniority means nothing! And I'm sick of everyone apologizing. We all are so sick of being here...its turning into a nightmare.

And my shoe broke...

Horrible Day

What was supposed to be our BEST day ever turned into the Worst day ever. This morning as the nurses were doing their "inspection", they took off a bandaid and found a sore with lots of yellow puss! Infection is a big concern because it could go right to the heart! So at 3:00, they put Tanner in a light sleep to clean out the wound. What they found was an old suture and "debris". But they weren't sure how big (deep) the pocket is. So tomorrow morning at 10, Tanner is going to the operating room so the surgeon can make sure that the infection hasn't spread deeper. Depending on the outcome...we will be here at least another week. Mark and I are together at the hospital through tomorrow...then we will have to make a new family plan. Story developing...

Hospital Perks

As I am enjoying the privacy of my own home...but missing my youngest son and husband terribly, I realize that there were some things I was missing about the hospital! I know, it sounds crazy...

*There is always toilet paper on the roll. Well...there was one time I went into a stall and whoops! No paper...no seat covers...nobody around...so I had to do a little shake and wiggle...and rush to the other stall. Lets not speak of it again.

*You get to use a fresh towel each shower and put it right into the dirty laundry that you DON'T HAVE TO WASH! Okay, maybe you have to use 4 towels when you are voluptuous like me...and it's good to remember to grab them from the linen closet...BUT you get a fresh one each shower!

*Your food tray is brought to your room and taken away an hour later. Well, it was really Tanner's food, but he graciously shared with me each meal. Especially the pineapple. I think it's what kept me healthy those 7 weeks. And one meal they thought he ate the croissant and went over his fat gram limit...but I ate it...thanks for taking one for the team, Mommy!

*There are no flies! No explanation needed...

But nothing beats HOME!

My record strength...6 weeks and 4 days

Whelp...I lasted 6 weeks and 4 days at the hospital. I had to call Mark on Thursday to come and rescue me. Tanner's health is FANTASTIC but his attitude is AWFUL! He had a screaming temper tantrum on the 6th floor patio (because he wanted my phone of all things!) that prompted the Child Life Specialist (Joan) to be paged. Our nurse practitioner heard him all the way on the 9th floor! Yikes! Anyway, the social worker thinks that Tanner is showing signs of Medical Post Traumatic Stress Disorder. Do you think? He's been through more than we ever imagined in the last 6 weeks. Of course, he's angry! He wants to go home! Us too! So after Tanner's melt down, I had one too. I called Mark and he loaded up the kids and switched with me Thursday night. My patience had worn out. Actually, the timing was perfect because Mark was ready for a break from the other 3 kids! The weekend plan is to adjust medications and be released on Monday! Thank Goodness! Our 7 week anniversary! What a journey. One for the record books, that's for sure. It's also good timing because as of Monday, November 9th, they are not allowing visitors under 16 due to the flu/H1N1 outbreaks. No siblings allowed anymore. Good thing we're leaving!

On the other hand...we have MORE great news! We're moving! Yipee! We have been busting out of this house for many years and we are so excited to be finally moving to bigger and better things. It's funny how everything seems to happen at once. Originally we were going to move this weekend...but Mark and I don't want to do it without each other...so next week it is. We have been preparing for this for many months...sorting and boxing our things. Mark cleaned out the garage this week and I am going to finish the kids bedrooms this weekend. The new house is 3200 square feet, 5 bedrooms and a loft/playroom! We are leaving Discovery Bay for Brentwood, but it's only 7 minutes away. The plan is to keep the kids in the same school until next year...only adds 10 minutes driving time. Nothing to us out here in farm country! We will post new pictures soon!

6 Weeks ... are we moving in?

To my loyal fans,

I must apologize for not keeping up. Mark was able to do Halloween on Friday at school with the kids and then switched with me so I could do Saturday Halloween with the kids. And this time, it wasn't so much of a recovery weekend as a "have fun with the kids and visit a bit with friends" weekend. It was fun to surprise a few on Halloween night...with the announcement that "Mark had dressed up like Christina!" It was funny. Trick or treating was fun until Courtney got sprayed with silly string...and then we went home. She actually went further than I had thought she would! Mackenzie stayed out with Chandra and family while Callahan stayed with Tim and family. So I got the best treat of all...snuggle time with Courtney! So unfortunately, I have not kept up on the blog for my faithful readers. BUT we have some really fun things to tell you all...

First, Mark taught Tanner to RIDE the IV pole. Fun, huh? And they spent Saturday night throwing a bouncy ball down the hallways. Jeez, they are going to KICK us out of here! Tanner has also been EATING LIKE CRAZY (and pooped 3 times yesterday!!!) I stopped at Safeway on my way back to the hospital yesterday and found soup, green beans, fat-free cheese (sounds gross, but he likes it!) It seems we spend most of the day feeding him! The xray has been clear for 4 days now! We haven't taken one today yet (would be day 5) but they are waiting until this afternoon. No rush. Tomorrow they are going to transition to oral diuretics and slow wean off the other IV meds on Thursday. WE HAVE A TENTATIVE HOME DATE OF FRIDAY!!!! Keep your fingers crossed....you know our history...but everyone says it's looking real good.

The nights are getting really long...Tanner isn't napping and is way more active during the day so he falls asleep quickly at night. Well, he HATES to be woken up for meds and screams and kicks and it's awful. Right now I'm nodding off...trying to convince him to watch a movie so I can snooze for a few. We've been up since 5:30am. Kinda early for me!

Thanks again for everyone's support! We're almost there!

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!