Wednesday Night

So NO extra drain (yet). If I've learned ANYTHING about this place...never say never! But they are treating the extra fluid now with lasix. His heart rate came down and he POOPED! We LOVE poop! Haha! Mark came with the kids today and I took the older two across the street to Panda express. Sad to say...its the first time I'd been outside in 8 days! But we just got moved back the the Cardiac ICU...much quieter and private. Although not as comfy for me. Gonna be sleeping in a rocking chair, I think.

Waiting for morning rounds

Sounds like another tube might be placed...waiting for Dr.Azakai to make the call....

My new blogger helper

So Tanner was feeling so good this morning, we played a few preschool games...Blues Clues, Wow Wow Wubbzie, and Dora! It was fun to see him have a little energy spurt. Then later when they did a chest xray, they found fluid sitting in the upper left cavity and not draining properly...VERY COMMON IN FONTAN PROCEDURES. This is exactly what could keep us here another 2 weeks. So we spent the morning entertaining doctors, nurses, therapy, xrays, sonograms, and starvation! It's been a very busy day. But the fluid did go down a bit...so they will reassess tomorrow. It might be a possibility to have another chest tube inserted. They do it bedside with sedation...I will be long gone hiding in the waiting room. Good news, Tanner's heart rate came down. Lots. Then he got his "folie" out...the catheter...and then peed lots! The nurses and doctors were so excited! It means no more swelling and his bladder is good. He also got another IV...and maybe another tomorrow. So it's been a busy day. Its funny how you think in the ICU it would be quiet, secluded, and private. Believe me, IT"S ANYTHING BUT! We're right at the front...everyone and their mother peeks at us...the curtain isn't big enough to go all around us. I guess the positive is that Tanner really doesn't care...and then he sees he's not alone...Then you have staff emptying garbages, sweeping floors, emptying toilets (because there is no bathroom in this ward...UGH!) Unbelievable. And we are now the longest tenants...they rotate out pretty quick...but tonight we have a baby crying for mommy and another on a breathing machine, moans, and the mom's cell phone rings constantly. Should be an interesting night.

Monday (I think? The days are running together!)

Pretty good day. Tanner perked up when Daddy and the kids arrived. They brought a HUGE Lightening McQueen Balloon and a candy bar! It was the first time Tanner has smiled in a week. It was great to see. Then we had found a television with an old Nintendo 64 and Mario Racing! So while Courtney went with me to shower...Tanner told Mackenzie and Callahan which characters to pick for the game! Very Cute. Then I took the older kids and we went to the cafeteria for lunch. They thought that was a big treat. I am so proud of my kids. They aren't afraid of anything here...and they talk to Tanner...and give me big hugs. Tanner and I miss them so much! AHHHHH! So Tanner had to start some respiratory therapy today. Apparently, because he's been in bed and not taking deep breaths...the little sacks in his upper left lung are "sagging". VERY COMMON for after surgery. So 4 times a day, Tanner sits up and the nurse "pounds" his back with an oxygen mask. It sounds loud and harsh, but it's very relaxing and he loves it! Then he has to breathe deep into another mask and make the red dot jump up and down. He doesn't seem to mind it at all. Everyone keeps saying what an excellent patient he is! He has also been taking oral liquid meds...which he HATES!...but he's been really good about suffering through it with "koolaid chasers". What a trooper.

Look how my Daddy dresses me when Mommy's not home! (Mind you, Daddy says the purple tights match the center of the white flowers...) Hmmmmmm....

The older kids were fabulous with Tanner. He had just been given some morphine, so he was a bit out of it, but the kids talked to him, argued around him (!), and Courtney colored some pictures for his bed. Just like home. Everyone is coming back tomorrow too.

Courtney talking to Tanner...telling him to get better fast so he can come home!

Saturday Night - sleep at last

So last night was finally uneventful! The nurse, Thunvie, came for the night shift (they work in 12 hour shifts-on and off at 7:00) and it was the same nurse who took care of Tanner his first night after surgery! So it was good to see her again. She was shocked he hadn't had anything to eat yet...so she checked with the doctor and Tanner is cleared to eat whatever he wants. He picked at a few goldfish and this morning had a little french toast. She then gave him a sponge bath and he smells much better! One of his drains is still putting out quite a bit...and it's some protein make-up...so they're just keeping an eye on it. What they are worried about is he appears to be withdrawn! I know he is a shy boy...but they suggested bringing in the siblings for a visit to perk him up. So Mark is on his way with the kids. I am so looking forward to seeing them!

Xrays at 2am

Xray at 2am

Vampires...here we come!

Another tough night. Tanner's main IV went "bad" so they had to try to get a new one. Mind you, this is at midnight. I tried to warn them he's a VERY DIFFICULT poke...small veins and if he's dehydrated...the veins are even smaller! But they were very concerned getting in the protein medication. Well, of course, 2 different nurses tried to no avail...Tanner's crying...me too...they finally left him alone at 3 am. No biggy to the doctors today...they just started a different medication in the last IV site. Wish they had been there last night! AND they were trying in his foot! Come-on people! We want to encourage him to get out of bed! I think the nurse was poke happy...same one from the night before and I had AT LEAST 10 years on her. Good thing she's NOT back tonight! I was DONE with her! Today we have the same nurse, Beth, who's been here the last 2 days. Very nice, very respectful of TANNER"S needs and discomforts. I have enjoyed her. As I write this...half asleep...Tanner is sleeping comfortably on a wave of morphine (do they give them to the parents?) I'm thinking we're going to have to convert to Vampires...up at night and sleep during the day. Although, I'm not sleeping at all...so does that make me a zombie?

Friday

Well today was rather un-eventful...the way we want them! Last night was rough, Tanner wasn't peeing so the nurses had to re-catheter him...took over 3 hours...several nurses tried, a doctor, and finally the urology doctor. Mind you, this is all at 3am! They kept tossing around "obstruction" and "extended bladder"...and boy...was I worried. BUT it's all okay...they think it was tight because Tanner was screaming...yeah, I would too! So today, he's been up in a chair twice, and sleeping quite soundly. I am going to try to rest tonight - as best as possible. His chest tubes are still draining (yellow, not blood...GOOD SIGN) and because of that, they aren't giving him any IV fluids because they want to drains to dry up. So his heart rate is a bit high...possible due to dehydration...so they are going to give him some new medication tonight to help replenish some of the lost fluids. When they are dried up, he can have the chest tubes removed...which are the biggest cause of his discomfort. I tried to run downstairs to dinner, told the nurse, had some SUPER chicken and mushroom quesedia and when I got back, he was awake (of course!) and a different nurse was with him because ours had gone to dinner! He was crying, "Where's Mommy?"... Guess that's the last time I get dinner alone! But, just about an hour ago, he woke up and cried, "I'm hungry!" First time he's said this in 3 days. I asked him what he wanted...he said "a hamburger!" and fell asleep. All good signs. He's been watching Baby Einstein over and over again...got to admit we're all starting to hum classical music!

Here are some of favorite Tanner Pix

Thursday, September 24, 2009

Curly Eyelashes!

My Beautiful Baby!

Today's big accomplishment was getting out the catheter and sitting in a chair! Such little things mean BIG THINGS! Tanner has been sleeping in the chair for over an hour now...very comfy and vitals look good. Sitting up helps get rid of the excess fluids...gravity works in our favor (this time!) Mark came for a few hours...we got to go to lunch together in the cafeteria while Tanner was napping, then he sat with Tanner while I took a shower. Now he's back on the road...probably right in the middle of commute traffic!

Day 2...24 hours pre-op

Okay...I am tired. I sure don't remember how I did this before. I crashed in the waiting room last night until about 4 am...bless Mark...he stayed with Tanner, sucking phlem and falling asleep in the uncomfortable chair. Then we switched spots and he sort-of slept until 8:30. I finally got a shower...and made me feel like a million bucks...until about 3 hours ago. Now I feel like 1 buck. Tanner had a little fever last night...seems to be par for the course...but it was gone this morning. He has slept quite a bit today...might be due to the morphine! We were just moved out of the Pedicatric Cardiac ICU down a floor to the Pedicatric ICU due to bed space. It's a really good sign to be moved...he's doing so well...but now I'm in unfamiliar territory...but a better sleeping chair! Mark went home this afternoon to check in with the kids and bring back a few things for me tomorrow...phone charger...waters...and hopefully let me crash for a few hours before he turns around and heads back to pick up kids from school. Gonna be a few hectic days before we get a schedule worked out.

Whew! He DID IT!

What a roller coaster day! Tanner left at 6:45am and the surgeon FINALLY came to talk to us at 12:30pm. What a long wait. But, we had a wonderful surprise visitor, my girlfriend Chandra, came to distract and entertain us. We felt a bit guilty at times; laughing at ourselves but trying to keep the atmosphere postitive. Both Mark and I can't thank her enough...she was there too when they brought Tanner back up to the PCICU and we were able to jump up and leave her to watch all our stuff. AND when we tried to go get some snacks...I had left my wallet in the room with Mark...so Chandra had to pay! JEEZ! Guess my mind was elsewhere!!!!

Tanner is doing remarkable. Surgery went as perfect as perfect could be. He DID NOT HAVE TO GO ON THE BYPASS/HEART/LUNG MACHINE! EXCELLENT! Then, they took him off the breathing machine after just 3 hours! He's been fighting some phlem in his throat, and it hurts to cough, so we just keep encouraging him.

Our first nurse, Bob, came from Philediephia, and had worked with other Fontan patients! He had even met a few older kids that had the same surgery, one was 23 and Bob said he looked like a NORMAL KID! Bob explained everything in basic terms...and just kept telling us how fabulous Tanner was doing. He told us that really the chest tubes are the most uncomfortable part of the surgery. They are so long that any movements pushes them around...they will stay in about 3-4 days. He also explained that because this should be Tanner's last surgery, they closed his rib cage with Titanium wires, twisted them close to the ribs and then in time, the bone will grow around them. This will make his chest WAY STRONGER than any of ours! What a perk!

The other picture is of Propofol...to keep Tanner asleep after surgery...and relax until his body was ready to go off the breathing machine...and the same drug THAT KILLED MICHAEL JACKSON! Talk about weird!

Okay...enough for tonight...more tomorrow...have to help Tanner cough.

And the waiting begins...

So we had a pretty good night last night. Mark slept on the couch in the waiting room (see pix above) and Tanner slept through the night. I did okay. Then at 6:30am we walked him down to the 4th floor to surgery. He got to watch some cartoons with Mark (photo) and then they gave him meds in his I.V. to help him relax and boy...it worked INSTANTLY! He smiled and started laughing! Good way to leave him. Now we're in the waiting room...waiting. It'll be about 4 hours. Good thing we have the laptop and coffee!

First Night...9/21/09

Well, we made it! In our attempts to beat the rush hour traffic, but still make the Bay Bridge carpool lane...we ended up waiting 4 hours in the admissions office! They were so packed here on the 7th floor, we had to wait for patients to be discharged and then the room cleaned. AHHH! While I don't mind waiting, and Tanner was VERY patient, we saw someone having a seizure, someone pass out, and another woman almost cough up a lung. Wasn't pretty after spending 2 weeks AVOIDING ALL GERMS! But we're here and Tanner is doing fantastic. He has done all the poking and proding willingly...and with some bribery of playdough. We've already made spaghetti and snowmen! The first picture is Tanner's dinner, which he was excited about...mac and cheese...until he tasted it! Mark ran across the street to Panda Express and Tanner polished off a full helping of white rice and soy sauce. (And 2 fortune cookies for good luck!) The other picture is of Tanner getting the side view of a chest X-ray. Now we're settling down for the night...they are coming for him at 6:30am! We'll keep everyone updated!

Tanner Previous Surgery - Part 2

Here is Tanner's second surgery...the GLENN...upper body arteries re-routed to the lungs done at 4 months old. What a cutie!

Tanner's Previous Surgery Pictures - Part 1

I came home from BUNKO last night, and Mark had been busy on the "family computer". He found a "secret" drive of all our lost pictures! Maybe THATS why this darn computer runs SO SLOW! Anyway, I wanted to post some of our favorite Tanner Surgery Pictures. This first set is from December 2005, birth, getting the BT SHUNT. The one of me in the red shirt was the first time I held him since he was born...11 days earlier. The last picture we call his "Santa" picture, and his ONLY PICTURE WITHOUT HIS SCAR. What a trooper.

Why Me?

So I'm doing my "motherly duties" (taxi driver) and I pull into the school parking lot to pick up Mackenzie. Mind you, this is my 3rd time at school today; first to drop everyone off, second to pick up Courtney, wait in the heat to get Callahan, over to McDonald's for ice cream (it is FRIDAY afterall! AND it's a food group, right?) So we go back to get Mackenzie (trip 3) and when I pull into the parking lot, I chose the middle lane. Now, the rules are: the right lane is for parking (i.e. LEAVING your car), the middle lane is for idling (SITTING in car) and the left lane is for driving thru. So I'm sitting in the middle lane, and a sheriff officer pulls up behind me with red lights flashing. I see him look up, look down, look up...and OH SHIT! When he FINALLY walks up to my window, he tells me I can't "park" in the middle lane. I looked mighty confused and he tells me when I shifted into "park", I parked. Confused again, he hands me the "ticket" (as seen above) and tells me it's the last day for warnings. I thank him, still confused, and he goes back to his car and drives off. So, I'm thinking maybe the problem is I'm "parked" over the NO PARKING painted on the asphalt. So I back up and leave it in drive while I'm waiting.

GUESS WHAT? HE PULLS AROUND AGAIN! He pulls up to my window, throws his arms out, shakes his head, and says "I NEED you to find a parking spot!" Now I pissed. Doesn't this guy know not to miss with a mom on Friday afternoon, after 2 hours in the car, and about ready to spend weeks in the hospital with her baby???? I tell him nicely, "I'm not in park, and the principal says we can park here!" He then asks where the principal is and I point out the office, he pulls in and struts into the office.

Now, the parking lot is filling up with parents, so he comes strutting out a few minutes later and says, "Where is the principal? He's not in there...How did he tell you that you could park here?" I said, "It's in the newsletter!" He said, "Well, I confirmed your story, and you CAN idle here, can't leave your car unattended. The school is the one calling us to enforce this. Have a nice afternoon!"

WTH! What a way to start the weekend...At least I get to go to BUNKO tonight. Gonna drown my sorrows....

Getting FAT!

OMG! Look at Daisy and Dodger now! They are enjoying their new home and we think ALL THE FLYS and tomatoes! Good Fun!

Courtney turns 5

One week down, one to go!

Happy Monday Morning!

What a week it's been. After we returned home from the hospital, it took Tanner another 4 days to fully recover! His color (mild pink!) is back and we've been loading him up on calories so his cheeks are a bit fuller! But, we've been shut inside...trying to avoid all GERMS! At first, he was very clingy...wanting to be held and non-stop attention, but as the week went on, we built train tracks and then he would play while I did laundry and cleaned. We've had a lot of fun talking and feeding the ducks...just taking time to enjoy the little things. He's even been helping me do the dishes!

Sunday was Courtney's 5th birthday. Now, this was the same age Mackenzie was when we brought Courtney home. Just seems unreal. She wanted to know who was coming to her party and how many party hats we'd need...so as my heart was breaking...I had to explain to her that we'd have a party after Tanner's heart was fixed. She seemed okay with that...Ahhhh! We went to the party store and she picked out Tinkerbell decorations for the day. We couldn't find a Tinkerbell cake form...so she picked out the flower (pix above) and the colors. We had lots of fun coloring, doing puzzles and EATING CAKE! It was a fun day.

Mark's dad, Roger, got sick yesterday and after a trip to the hospital, has pneumonia in his left lung. He was sent home with antibiotics last night but is still running a fever today. We are waiting for news...we want him better! More news to follow...

We are counting down...we have to be at UCSF Sunday at 9:am...then surgery first thing Monday morning!

Mackenzie's 10th Birthday

Fall School Pictures

OMG! I have to admit...these are THE BEST school pictures my kids have EVER taken! And, of course, I ONLY ordered ONE 8X10 of each! Oh well, here on the blog, they will last forever! Courtney is in Kindergarten, Callahan in 3rd grade, and Mackenzie in 5th grade.

Tanner's Hospital Stay - Short Video clip

Here's a short video clip of our stay at UCSF. Just practicing for more movies to come!

Thursday, September 3

Happy Birthday to by Wonderful Mackenzie! My "baby" is 10 today! Kind of eerie...I was in a hospital (Alta Bates) 10 years ago!!! What a journey. We are so glad we are going to see her today. Not sure about timing yet...Tanner had another fever last night and his white blood count only went down one point this morning. But, he's eating and drinking, asking for more bacon! We did take a short visit to the "playroom" last night. I was very proud of him...he's usually so shy, but he wanted to go check it out! He really liked the car garage! Later, Joan from Child Life brought in some playdough and Mark and Tanner have been having lots of fun.

SURGERY CANCELLED!

Would you believe it? Actually, it's similar to what happened the last time! At the 4 months old Glenn surgery, they forgot to tell me to stop Tanner's aspirin so we had to reschedule! I'm not surprised...nothing's ever easy! Thank you to all our friends and family that have been helping us...sorry to keeping dragging this on! But I will be keeping up the blog...it's been very therapeutic for me!

Tanner's Cath Results

Good morning everyone! Well, it wasn't a bad night. Bells and whistles went off, but I would just re-arrange Tanner and we'd go back to sleep. He developed a little fever...and here's why:

The photo on the dual pix shows the line of dye going straight up the middle. The top photo shows a curvy line snaking back down thick to thin. This is NOT supposed to be there. Because Tanner is "blue" (but not for long!) this was the way the heart was trying to get more oxygenated blood to the body by developing little "collaterals". But then, the extra blood was pooling in the lungs as shown by the dark lines on the bottom dual photo. So, Dr. Tietel, Tanner's cardiologist, put "coils" as seen in the single photo to close them off. This is very normal for "blue" babies and won't happen again, because TOMORROW TANNER WILL BE PINK! These coils are platinum and won't set off any metal detectors, we've been reassured! Dr. Tietel said he gave Tanner some very expensive jewelry!

Things have been very up beat here. Tanner gets up to pee...naps a bit...and watches Lightening McQueen over and over again. Today is a rest day...this afternoon the surgeon is come to talk to us about tomorrows procedure. He's still a bit warm, but everyone says it's very normal due to the coils. Amazing, huh?

P.S. (as if I'm writing a letter! HAHA!) Anyway, the photos show the right side of the heart. Tanner now has "jewelry"on both sides. Cool little kid!

!st Night at UCSF

We are very tired. And I am very frustrated that everything electronic I pick up DOESN"T WORK! My FLIP video library is "lost" on the laptop...I wanted to post pix of Tanner's room. We'll try tomorrow after coffee (I"d say "after a good night sleep" but we all know that's not going to happen!) Only one parent is allowed to sleep bedside so Mark is going to try to sleep in the waiting room. The plan is to take turns. It already seems like we've been away from home too long. Tanner is running a fever, but they're not that worried because it's common after a cath procedure. It's just been a nightmare getting him to take any meds by mouth. We were sharing a room with 2 other patients, we had about 1/7th of the room, and just now (9:30pm) got moved to a different room all by ourselves until tomorrow. Much quieter! Time to settle in with some McQueen Video and head rubbing!

Tuesday AM

WOW we're actually here again~somethings are different, but LOTS are the same! We left Discovery Bay at 5:15am, and while Tanner still slept we zoomed through the morning commute. We arrived here at UCSF at 6:30am, checked in, and came up to 7th floor, North. Tanner was SUPER! He carried his new Lightening McQueen book (thanks Sepie!) and did very well. We were met with a nurse who said we looked familiar...she did to us too! Made us feel good. Joan from Child Life came and "role-played" with a doll and Tanner. He was shy at first...but as everyone "marched" through (nurses, doctors, child life, nursing students...) there was a point where it was just us three, and Tanner turned to me and said, "Where is everybody?" SO CUTE! He took his sleepy medicine, but couldn't chew the benedyl...they're going to give it through the IV during the Cath procedure. Everyone was impressed at how well he did as they poked him again and again trying to get the IV started (first they put cream on his hands to numb them) Mark and I left him loopy...he was counting fish on the ceiling...walked to Starbucks across the street and are now waiting for the procedure to be done. Should be a few hours ... the cardiologist already let us know things are going great!