California McMillans

Tyler is doing well.  They increased his diuretics causing him to be Potassium deficient.  We are working on trying to get him to take potassium which is GROSS.  We tried it via IV which is painful, tried a feeding tube which Tyler was less than stoked about, so we are just trying to have him gulp it down.  That will help keep arrhythmias away.  They split his chest tubes to see if they could possibly take one out which would help with his pain.  He tried walking today and took a couple of steps but was in a lot of pain.  The goal is to get him to drain some fluid to eventually get chest tubes out, start walking a little, get his potassium levels up, get him to eat a little more.  His arrhythmias have normalized.  They put his pacer to 110, so his heart is beating on its own in a normal sinus rhythm which is great.  Thanks for all the prayers, calls and well wishes.  We are so grateful to have such great family and friends who support us to make this journey an easier one.  Danny and I

Scott turned six on Saturday.  I was worried that because Heidi and I were in the hospital that he would have a lousy day.  It turns out he had a fabulous day! Cake at Pop and Grandma's Some cool gifts Flying his 4 channel coax helicopter Thanks, Heather and Jason! Kira just being cute Roman and Jason having cake Then on Sunday, they had another party for Scott while Heidi and I were in the hospital with Tyler. Pop's Mario cake T Thanks for watching the kiddos! It was a good birthday.  Turns out that one of his friends also had a birthday on Saturday and had a huge party at Pump It Up, a gallery with inflatable toys.  After that, we had taco's at Pop's and played Wii.  Scott wasn't too pleased that I knew how to do Mario Kart.  Thanks to my training at the racetrack with Miles, I know how to swing wide, then cut sharp.

Overall, I think everyone is happy with how Tyler is doing. Cardiac wise, he is going in and out of junction and sinus rhythm which is normal for a post Fontan and should correct itself.  He wants to be in sinus rhythm which helps his heart function and sats.  When he goes into Junction rhythm, his sats drop to the high 60's low 70's which isn't great and he gets tachycardia.  They have been trying to control when he gets paced but it often competes with his normal heart rhythm.  None of this is a major concern.  Just a lot of tweaking and tying to figure out why he is desatting. His effusion seems bad and then he dumps a lot of fluid.  They have increased his diuretics to a moderate level and could continue to increase if and when needed to get rid of fluid.  His left side has been clear, which is great because he doesn't have a tube on his left.  His right side has been the concern.  They get x-rays to determine if a pigtail chest tube is needed, but so far so goo

Tyler stayed in 7 North Wednesday and Thursday Tyler was happy about winning this whistling nerf ball at bingo Eric, one of Tyler's nurses from the Norwood in 2007. Hanging out in the playroom on the 6th floor Right after surgery In a fair amount of pain.  Heidi consoles him. A decent amount of wires and tubes, but there are patients with triple. On Saturday, he had some stuff removed, like that somanetics forehead monitor, his art line, his foley catheter, and IVs from his hands. Check out that neck dressing.   Today is Sunday.  Tyler had a good Saturday and good Saturday night.  They were worried about an effusion on his right side since Tony hadn't put in a third drain.  A chest x-ray confirmed the presence of an effusion, but once they changed Tyler's position, tons of fluid drained out and they don't think another drain tube will be necessary.   When I showed up this morning, Tyler greeted me and said he was doi

Tyler was finally able to get some fluids.  His lactate continued to rise, despite the decrease in blood sugar from the insulin infusion.  Jeff, the nurse, and I decided that the one to correctly guess the lactate levels would get to give Tyler a popsicle. Well, we were all wrong because the numbers were way high.  Then, Jeff, the attending who understands that medicine involves the occasional obtuse solution, said, "These are just numbers.  Look at him.  He's doing fine.  He's probably dried out, I mean, look at his CVP--it's four.  Give him some fluids."  So Tyler got to drink and his numbers improved.  Then he got a popsicle which made him happy, and then the old Tyler was back:  "I don't WANT ORANGE!  I WANT A BLUE POPSICLE!" At about midnight, Heidi recommended I go to sleep.  The nurse was going to stop his fentanyl drip and just give him morphine prn, which should help him sleep.   I turned the chair into a bed and closed my eyes.   Heidi

Tyler has been fussy for the past five hours.  All he wanted was water.  The nurses didn't want to give him any fluids because it would stress his heart.   The nurses and doctors listened to him moan--he'd plead with them, saying, "Pleeeeeeeeeeeeeease, can I have some wa wa?" I put in my ear plugs, and when I had had enough, I approached the nurse and doctor and said, "He's stressed because he's thirsty.  You gotta intervene." They were also concerned at Tyler's rising lactate levels, a sign of stress.  Sometimes, the lactate is high because of increased blood glucose and administering some insulin can lower it.  However, sometimes the lactate is high because the heart is under duress, in which case insulin would be ineffective and they'd have to intubate him. I said, "I know what the books say.  What does your gut say?"  Tyler cried for ice chips and hot chocolate for several hours.  Finally, one of the physicians said, "

Tyler presented to the OR at seven this morning.  They gave him some oral versed and then Heidi and I took a stroll through golden gate park.  The team had anticipated a 4-6 hour surgery.  At 3:00 Heidi and I started getting nervous.  They said they would call to update us on the surgery, but no.  finally, we saw Tyler's bed rolling down the hall. Tony came to talk to us and began speaking to me in Spanish.  Then, he told us that the surgery went well and said, "He went under great.  Then there was a problem.  When I opened the sternum, his heart was fused to the bone.  So I started to dissect it and it started to bleed.  I put him on bypass and had to cannulate him through his neck....His valve regurgitation was on the lower end of mild, and I thought that was really good, considering that several months ago he had moderate... His heart function looked good.  The Fontan pressures were about eight when he first came off, now they're about thirteen (anything below 15 is g

Tyler had a pretty good day.  He sat patiently for an echo and Tony was pleased with his AV valve, saying that the meds must have really helped.  That, or the hand of the Lord is evident.  Heidi called me at school and said that Tony promised that the surgery would happen.  I said, "He promised?"  And Heidi said, "He said he would do everything in his power to make the surgery happen." Several of you have asked if the surgery is on for sure.  Medicine is not like the Honda motorcycle factory in Japan, where they assemble one bike every 3600 seconds.  Rather, medicine deals with human beings and each case is different.  In a hospital setting, emergency cases may present higher priority and they may bump Tyler.  You must understand that doctors make decisions based on what they feel is best for the patient with the knowledge they have at the moment. Tyler is currently the first case, so as far as we know, he'll present to the OR tomorrow at 7:00 Pacific time.

Tyler went to UCSF yesterday and got connected to milrinone.   I rode the VFR to SF after work and Tyler was in good spirits.  He even offered me a cookie.  Heidi slept in a chair-bed alongside Tyler and I got a hide-a-bed in 6-long.  The person to my right was snoring pretty loudly and occasionally cried out, and there was a big diesel truck that seemed to run all night, but I slept well from 5-6.  We are still programmed for surgery tomorrow, so cross your fingers!  Thanks for your prayers.

Heart moms....I just read on someones blog that insurance is covering her sons diapers after age 3 since he is on LASIX.  Wish I knew that sooner.  Hope it helps.

First, I can't believe it is 2012....CRAZY!!  Life gets busier and times goes faster.  I remember when a summer seemed like FOREVER and now it seems like a short little break. There are so many things that I need to work on and want to do. Keeping the house clean and uncluttered.   I like throwing things away which I am proud of.  Plan and prepare meals.  Why isn't that as easy as it seems? Excercise....haven't done that in about 6 years and it is a resolution every year. Work on my book. Family History. Be patient.  Make my baby a napper. Quality one on one time with my hubby and the kids.  That sounds good for now. Feeling MUCH better since my anxiety weeks!  Whew.  Soooo Sooo Grateful.  We all have our various trials in life.  I just couldn't live with that.

Have you ever had anxiety? Full blown anxiety--the type that you are worried over things that is simply irrational to worry about. Or maybe rational, but way out of hand.  Logically they will all work out, there are solutions, they aren't that big of a deal to spend your day worrying, but you just can't stop your body's emotions and you aren't functioning like a normal human being because of it.  You are emotionally and physically affected.  It is the craziest thing.  I am usually a pretty happy, optimistic, life will be alright kind of person. Don't get me wrong, I have worries and bad moments but they are usually not that big of a deal.  Well, I was not my normal self  these past two to three weeks.  They were HORRIBLE.  I had anxiety. Have you watched the Bachelor?  Due to totally different reasons I became one of those girls.  Not the nice, drama- free ones I like.  I was the couldn't stop crying over nothing, one of the crazy ones.  A sad, sad sight.

Work.... Danny left East Bay Dental after being there for years.  It was a great job for him over the years.  He has been there from the beginning and grown it to be a successful practice, but felt there wasn't much room for his own growth or where he saw himself forever so he decided to make a move.  He found a job that he really enjoys.  He works beside a pediatric practice and sees all the teens and adults.  He really enjoys the girls he works with and is excited for this opportunity. I on the other hand gave up coaching.  It was a great part time job, but it was time for me to be home with the kids.  It took a leap of faith, but I am so grateful that Danny urged me to stay home and decided to finally make the move to full time stay at home mom.  There isn't a day that goes by that I would rather be doing anything else than be with my kids.  I don't have to say no to something I want to do with them because of work.  It is the BEST and I feel so very blessed!  

Kira = Independent.  This girl wants to do everything by herself.  When she started being spoon fed she would not let anyone feed her wanting to feed herelf.  That continues to be her personality. Whether undressing herself, climbing into the bath and turning on the water she is Ms. Independent.  It actually makes my life really easy in some ways.   She is such a social little girl and will go up to anyone to start a conversation.   She is pretty tough and can hang with whatever the boys are doing and zooms around cars and pretends to build legos.  In other ways, she loves her babies and dolls and  has imaginary conversations with them or on the phone.  She loves shoes.  Putting on everyones shoes.  She can actually sit and play with things for long periods of time, is verbally understood and speaks spanish words back unlike her brothers who were still mute at her age. Girls mature so much faster than boys in some ways.   She is determined to be a big girl. Getting out of

It has been a pretty good year for Tyler (relatively speaking).  A very active 4 year old awaiting for a Fontan is a delicate situation. As much as Danny and I let Tyler live a normal life, he just doesn't feel good most of the time and it shows.  His sats have continually dropped throughout the year (probably around 70's most of the time) and it has made it hard for our very active and lively 4 year old to live how his mind wants but heart doesn't allow.  Knowing how to parent Tyler is difficult.  It is hard to know if his behavior is a result of him running around and feeling crummy or just acting crummy. I am sure it is a combination of the two. Tyler finished up joy school in Walnut Creek.  He was with 3 very cute and very sweet girls and did fairly well.  I am sure he was the most trouble of the group but enjoyed going and enjoyed being with friends.  He loves singing time every week.  It is the perfect activity for him because he gets to sit or I carry him when we

 Kira likes to park the cars, just like the boys.  Scott built a lot of this Pirates of the Caribbean lego set.   Shortly thereafter, Kira pulled it off the dresser and broke it.  Scott was surprisingly mature. Heidi and I are mostly de-stressed about the condo.  After the flood, I replaced the toilet and dishwasher, and Heidi helped me put a new floor in the bathroom.  It has been a big stress, but I tell people, "At least this problem doesn't involve any illegal activity or moral wrongdoing.  No one has died as a result of this negligence." Today, as we were putting in the tile and I was placing the grout, I said, "Construction is not hard.  Physically demanding, but mentally relaxing."