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I haven't posted in awhile in hopes that my next post would be: bought airplane tickets flying home today!  Turns out too many people were worried about Olivia.  Everyone was right to worry, yesterday's cardiology appointment was a depressing one.  The blood transfusion that magically saved the day is only a small band-aid on this gaping wound. 

In order to understand we must go back in time: "Only 15% of HLHS babies have 2 superior vena cava's," Dr. Spray said pre-op. "There was no second vena cava, everything went fine though," Dr. Spray post surgery.  "Theres a huge thing carrying blood right there," echocardiogram radiologist when asked if she still saw the extra vena cava.  "It's just a big vein," said a cardiology attending.  "Olivia's earlier cath's only showed it to be a small little vein," Dr. Schatner said yesterday.  She then proceeded to explain (praphrashed in a mixed up incomprehensible way, but how I understood it):

The large vein has grown since her norwood on her pulmonary artery.  It turns out it is growing and slowly it will siphon more blood from the direction we want the blood flowing.  Meaning lower sats, until finally when she gets older it has grown so big that her sats would be at a very dangerous level.  The only option is to do catheterization number 3 and coil off that vein before it gets too bad. 

From my understanding HLHS kids on the path to a fontan circulation, which requires all 3 surgeries to complete, grow these tiny little veins along their arteries (or something like that).  Sometimes these collateral veins take too much blood away from the fontan circulation that it gets very dangerous.  Olivia has one of these veins that must be coiled off for her to survive now.  Her last 2 catheterizations went through her leg, and the last one it took them 2 hours to find her pulse in her leg (very scary).  This cath will go through her neck.  I haven't had time to research going through the neck vs. the femoral leg artery, but the neck sounds just as scary.  I guess the only good news is that we won't have trouble finding her pulse in her neck after the cath. 

Typically CHOP likes to wait 6 weeks to bring a post-op child to the cath lab, but the great Dr. Rome doesn't think it is necessary to wait.  The greediness to want to get home inside of me is happy, but I am still worried maybe it is too early.  I told them we can wait or we can do it now I would trust their opinion.   Right now I am waiting to get the call for them to schedule it.  If she gets her cath friday and everything goes great, we still might be able to get home before Easter, which would be so amazing.  

If that wasn't enough her eating of the enfaport is random.  Sometimes she loves it, other times she hates it.  Sometimes I have to fight with her to drink it, and other times she'll just drink half of what she needs.  With all the diuretics she is on, she needs to get almost 670ml's a day to hydrate and get some nutrition from her formula.  Yesterday before she went to bed we were at 450ml's.  I figured I would feed her at 10pm, and she took 4 oz, but I didn't think she'd wake up at 2am and 5am to get 8 more ounces.  At 5am she didn't want it, but she woke up crying like she was hungry, after a 10 minute fight she took 4 ounces.  This morning it was a fight to take 2 and a half ounces.  If she isn't careful she will end up in the hospital before her cath and maybe even an ng-tube.  AHHHHHHHHHHHH!   I just want to man scream. 

To describe how I feel right now can be summarized as depressed.  In detail I am excited to be going home, helpless about this cath, mad about her feeds, empty from missing my other kids so much, lonely without my wife who always knows what to do.  It is like that empty hopeless lonely feeling you get in the pit of your stomach when everything you wanted behind Door #3 turns out to be a donkey wearing a sombrero with a cart full of donkey crap and the audience is laughing at you.  If I was a lady i'd be crying myself to sleep every night, as a manly man the tears just don't come, so it just feels like emptiness.

The good news is that if everything goes perfect, she eats well, and her pulse comes back in her neck we might just be able to get home April 4th.  Anything past April 4th and the emptiness will be so empty that it could fill a bottomless pit. 

On a positive note, Olivia watched Sesame Street the whole time I wrote this blog post, what a good girl giving me a little break.  She whined a little bit as I posted the cute pictures, and started crying as I hit Publish!  Now she's better, in daddy's arms. *spoiled rotten*

180

Sorry about lack of updates.   Melanie took Nathan on her first camping trip ever,  in a tent on the ground.   I told Nathan to remember all the good details.   They will have a lot of fun.   Delilah is with her nanny and her fun cousins.   Olivia and I are hearing whispers of discharge.

First,  Olivia has been sating in the 71 - 68 range when deep asleep which is not good.   Luckily we had a great attending,  as usual.   The course of action was a blood transfusion then a catheterization.   A few days post op her hemoglobin was 17 and yesterday it was 14.  She was sating a lot better at 17.  So when she got her blood transfusion last night I was skeptical.   Turns out once she went into her deep sleep she was *drumroll please* 77 - 79 allllll night long.   I was beside myself and wanted to tell Melanie, but she so far out camping she can't get a signal.  

It was such a relief to see some good sats and no nurse coming in the middle of the night to put oxygen on her.   The other two hurdles have been cleared as well.   Her chest xrays look squeaky clean and clear,  and the chylothorax has been whipped into submission by the best tasting disgusting low fat formula ever.   Enfaport is almost $78 for 10 days and luckily Olivia is drinking it like it is gold.   THANK GOD.  

I would like to stay in the hospital and extra day to be safe but we have a shared room.   We have already had two different suite mates so far and they have been good babies.   Last night a poor sick boy moved in with a crazy bad cough.   His little brother stayed in the room too,  and is probably sick as well.   If you can imagine my face when I learned this I was freaking out.   We have kept our baby sickness free since November 1st and now our favorite hospital would get her sick buying her a an extended stay.   I asked the nurse but there was nothing that could be done.   There policy is to not have a sick kid share a room but with no rooms there was no choice.   The nurse quoted some DHH policy that it isn't a problem as long as all contact precautions are followed.   All nigt listening to that sad cough imaging the germs wafting over the divider curtains into little Olivia scratched up nose.   I managed to sleep but it was nerve racking.   With all this in mind the doctors would like an extra day but it comes to a question on what is worse her getting sick or discharging her to the RMH and seeing her doctor Monday.  

With the complete 180 turn last night and through this morning with beautifully high saturation I was just told by the nurse that it is pretty definite and she was sending our prescriptions down to the pharmacy.   Then the dad next door blew all sorts of stuff out of his nose.... Get us out of here!!!!

I am confident everything will be OK and if it is not we will leave our sickness free Harley Davidson Ronald McDonald room and haul butt back to the hospital.  

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Look no tubes!

Yesterday I dropped Melanie off at the airport.   It was so hard on both Melanie and I for her to go but the kids needed her at home and Olivia needed me.   It was so hard for Melanie especially because she left her sweet Olivia.   Even though Olivia hasn't had much time with Melanie these past 2 months you wouldn't know it.   Olivia loves her mommy so much and it was like they had never been apart.   Even though this whole thing sucks I was so excited to see my wife being the awesome mommy she is. 

Upon returning to chop,  they had moved Olivia to the step down unit.   They were about to give her a strong sedative but olivia's heroic father showed up,  pick up her little butt and calmed her down.   Unfortunately, we keep getting a shared room.   I hope they enjoy my snoring as much as Nathan cub scout pack does.   Olivia must like my snoring because she gets so much sleep at night to the soothing sounds of daddy.

The chylothorax is pretty much gone.   They pulled her chest tube drain this morning.   She has tremendously decreased the amount of fluid that was coming out of it.

Last night I was so stressed and tired front an entire day and night taking care of her by myself.   She would not drink her special nonfat formula for anything.   She would thrash her head and lash her tongue at the bottle she hated the stuff.   I managed to trick her into an ounce her or there.   One time I got her to drink 2oz while asleep.   I was at my wits end with her eating this stuff,  almost to the point of crying.   It's just so hard knowing I am so helpless to make her feel better.   And she suffers and looks at me for comfort.  

Fast forward to today and the arrival of my mom picked up my spirits some.   Olivia doesn't know her nana but in a few days she'll realize she has two great gradnmas,  great meaning they are great not old haha.

We got a new family in the room tonight.   The poor lady cried herself to sleep worrying about her daughter.   I know I feel like that sometimes,  and Melanie does as well.   She misses my loving snores at night lol.   I have done this post over the day and if you can tell Olivia just took almost 3oz in her sleep like a champ.   I'm very happy with her and as Melanie said we look forward to the family finally having a holiday together,  easter.   Maybe even a normal life for a year or two!!   I'll post an update tomorrow.

Tomorrow is her echocardiogram so cross your fingers everything looks amazing.   I think there are 3 things left on our discharge list: eating the enfaport with gusto,  great echocardiogram,  and the fluid clearing up around her lungs with the diuretics.   Once those things are knocked out of the park as week or two at the RMH is our last hurdle to flying home.   Not to mention a cardiology appointment and clear chest xrays.   Chylothorax always likes to rear its head.   However,  the physician's assistant is confidential it has healed and 6 weeks of enfaport is the worst it will get.   Please please please....   Since I'm in a good mood I'll leave you with the song that keeps playing over and over again in my head....

"All my bags are packed I'm ready to go.. La la la la la la la la I'm leaving on a jet plane ready to be home again....  "  (I forget the lyrics it sounds good in my head).   First thing I do when I get back is hug the heck out of Nathan and Delilah and definitely never let go!   Then regain manliness,  poker game,  hooters,  a good outing with my friends.   I miss everyone so much even my boss. Hahaha. I do have a great boss.  Thank you UNO for being understanding.

I'm like Nathan trying to avoid bedtime

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Progress

         Today, they took out Olivia's chest tube. We are hoping no more are needed. She decided that she would eat when she wanted to which isn't a surprise. She is taking some here and there but no where near what she was eating prior to surgery. To straighten up some confusion, apparently on all imaging Olivia had two superior vena cava like we might have mentioned before. When the great Dr. Spray got in her chest, he couldn't find the left superior vena cava. So no worries right? Well not exactly. As long as her venous pressures stay low, they won't do anything. If she constantly has chylothorax or high venous pressures then they will do a heart cath and look for the left vena cava. If it is causing a problem, they might have to go back in. We hope this isn't the case.She has developed pulmonary edema on one side that they are treating her with extra lasix to fix.

        An absolutely fabulous and heart felt moment happened last night. In all of this craziness, Nathan is doing great in school; Alpha honor roll in fact. Last night was his first reconciliation which he was so nervous for but did a great job at. We missed Brett and Olivia cheering him on, but we hope they will be home for easter and hopefully his first communion. While going through all of the piles of mail, I came across an invitation for Nathan to a friend's birthday party. Now, birthday parties invites are like status verification. If you are cool, you get the awesome invites. So to say Nathan has been anxious about getting one to a special party that he heard about at school is an understatement. I opened the envelope and passed it on to him quite quickly. He was thrilled, sat it down and ran off to do his chores. I later picked it up and read times and places. Shocked and surprised, I read the bottom line. It reads in lieu of gifts, please donate to Olivia. How selfless??? Four little boys have sacrificed their gifts for her. I can not even begin to express how amazed I was at their generosity. I sat on the floor and wept; tears of frustration, sadness, happiness, amazement, and gratitude. I just hope
 one day we can truly thank everyone for all they have done for us.

Goods and bads

Another rough day.   She stopped drinking her new formula.   She drank the new low fat formula great for 36 hours probably.   She was getting between 2.5 - 3.5 oz every 3 hours.   Today at 11:30 she took her last 3 oz bottle.   They also started to wean her sedative,  dex.  

She also hates her nasal cannula and is always going at it.   Her strategy is to rub her eyes then move her hand down until she pulls it out of her nose.   Just a few minutes ago they finally took it out.

She's now getting a full load of iv fluids.   She still won't eat probably because they won't let her get hungry or dehydrated.   She isn't sleeping anywhere near as much as she used too.   Tonight she's only slept 4.5 hours and only a few hours during the day.   She's way over tired.   I'm tired of seeing those blue eyes.

In a few hours I'll be dropping Melanie off at the airport and tomorrow I'll pick up my mom from the airport.   I think I'll be pretty tired from olivia's current sleep schedule.  

Good news is her chest drain is draining only a small amount now so maybe only another day or two with it.   It also means our chylothorax issues might be half way solved.   No more leakage but she still bought herself probably 6 - 8 weeks of her low fat formula.   Maybe tomorrow will be better.

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Rest for Olivia and Brett

Today, I slept all day and Brett held down the fort at the hospital. When I returned Brett and Olivia were both tired and frustrated. I sent him to the rmh to sleep and scooped her up. It took a minute to figure out how she wanted to be held but as long as she was cradled close she was happy and off to sleep. We are hoping they transition her to all PO meds tonight and wean the oxygen off tomorrow. The draining from her chest tube is less but not gone. We will know more tomorrow.

Didn't want me to pick her up =(

She's slept a lot so far today.   I figured she'd like a change and when I picked her up she got upset.   Her sats or breathing didn't go up so maybe it wasn't pain.   She might not want to be messed with I suppose.   Here's a video with her sad little whimper,  still no smile.

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