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!