Lucky 27!

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Do you have any lucky numbers? Whenever we go to Vegas (hah, those days seem like a lifetime ago!) I always play 27 and Abe plays 22, our lucky numbers. Yesterday I realized that Santi's surgery was on our 22nd day here and that today would be our 27th day. I told Abe, "I bet we go home tomorrow!, it's day 27!" Not wanting to jinx us, we kept that thought to ourselves.

This morning, everyone who came to our room just spewed that four letter word all over the place. H-O-M-E!

Santi has been off oxygen for the past 24 hours and doing great breathing on his own. His sats linger around 78-82. I had the pleasure of taking off his nasal cannula this morning. It felt ceremonious. He's been on oxygen for his entire life, literally. He looked at me, I looked at him and I could just see relief all over his face. I covered his cheeks in kisses.

Homie home home, we're going HOME!!

Day 26 - back to CV Acute

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We were transferred back to CV Acute (the less critical unit) this morning. We're in a private room, Hooray! Look at all this space for activities!

Santi is in really great shape. He is only on a diuretic and pain meds as needed. They are giving him ibuprofen and Tylenol with hydrocodone for his head aches. As per usual, he's eating like a champ. Yesterday he was on "room air," which means no oxygen support, for a few hours. He did fine. His sats hovered around 78-81. Today he's had a few desaturations and has been on and off of tiny bits of air. At the moment he's on room air and satting 80, I'll take it!

Now that we are back in CV Acute he is actually getting quality rest. Abe and I are guarding him from nurses, making sure no one wakes him up unnecessarily.

Rule #1

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Never wake a sleeping baby!

Remember a few posts ago when I said I had "a mouthful" to say about some of the nurses here? Well I'm glad I waited to post about that, for two reasons: 1) You should never email, text or blog when you're furious about something. Give yourself time to cool off and really reflect on the situation, you might see it differently. 2) Now that we've been here for 3+ weeks, the good nursing experiences have totally outweighed the bad!

Our first week here was rough. We thought we'd be here for one night (hah!) and as the days slipped by our nerves were a little frayed. Obviously, Santi getting an awful staph infection in his blood from the cath or the numerous blood draws, infuriated us from the beginning. We had him home for 10 weeks and kept him perfectly healthy. We even had to deny friends and family the joy of meeting him to ensure he wouldn't be exposed to any illnesses. Then, we bring him here for a routine procedure and boom, 14 days of powerful IV antibiotics and an early Glenn!

So anyway, here are the things that really pissed us off: a nurse waking him up to bathe him at 2am, the same nurse waking him at 3am to weigh him and change his linens, waking him for vitals (do you see the theme here?), nurses poking him 3 or 4 times while trying to draw blood or put in an IV and finally the overall lack of respect for his need to sleep. People (doctors, nurses, housekeeping) are just loud, careless and oblivious that there is a sleeping baby in the room. This is something that still irritates me. Every time there is a shift change I have to ask the nurse not to wake him up for vitals. I understand they have a job to do, but they also have a baby that needs significant rest in order to recover.

To add to our frustration, the majority of his nurses are young ladies who do not have kids and have not been educated on the importance of sleep. They scoff at the idea of delaying their tasks to let him sleep and then they melt when he wakes up smiling and flirting with them. "Wow, he's such a happy baby," they'll say. "Do you know why?" I reply, "because you let him sleep!" There is nothing sweeter than a well rested baby! I can only hope they'll learn and be more respectful of their future patients.

48 hours post-glenn

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Santi is doing fantastic and moving in the right direction.

Yesterday they removed his breathing tube. He is currently on half a liter of oxygen and still weaning. His chest tubes and catheter were also removed. He started eating yesterday, yay! He's eating 3-4 ounces, every 4-5 hours. It's not as much or as frequent as before, mainly because he is still on pain meds and spends most of his time sleeping. However, he is no longer on the heavy duty IV drugs, morphine or atavan. They are only giving him ibuprofen and Tylenol with codeine for pain and it seems to be all he needs. He is on an IV blood pressure medicine and were hoping he is off of it by tomorrow.

One of the biggest issues post-Glenn babies have are headaches. They are not used to having so much oxygenated blood flow to the brain. It creates pressure and it hurts. His head is even still a little swollen from the pressure. We will continue to give him Tylenol at home to manage that pain which could last for a few weeks.

We were moved to a shared room yesterday which we were not thrilled about. But only the most stable kids can share a room, so I guess it's a good thing to be considered strong and stable. The worst part is that the parent area of the room is super tiny. I'm getting claustrophobic!

Post-Glenn

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We are approaching the end of the first 24 hours post-op. I'm happy to say they have been 24 uneventful hours. That's a good thing in the hospital world!

I slept at home (our LA home) last night for the first time in 22 nights. Now that I've gotten 9 hours of beautiful, peaceful, uninterrupted sleep, I can actually compose some coherent thoughts!

Santi is swollen, especially his head. He's sedated. He has a breathing tube, chest tubes, multiple IVs and a urine catheter. He is on medicines that I can barely pronounce, not to mention spell. But overall, he's stable and he is exactly were he should be. The only goal for today is to extubate. And I don't even want them to rush that. When the breathing tube comes out, I want them to be sure it will stay out.

We still have some hurdles to overcome but I have faith that our little Santini will surpass everyone's expectations. I can't wait to have him back in my arms!

Day 19

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...and on the 19th day there was news, BIG NEWS.

First thing this morning, Santiago's cardiologist came to see us. She told us that we would not be going home tomorrow. We would be staying until his Glenn. I immediately told her we wanted Dr. Starnes to do the surgery. This wasn't a surprise to her. She knows he is THE reason we relocated to LA. But, as you can imagine, the #1 pediatric heart surgeon in LA has a tight schedule. I was prepared for them to tell us that the next available date with him would be several weeks from now. In my head I was imagining all the push-ups I'd be doing to pass the time. Oh man, I'd be so buff by the time surgery rolled around.

A little while later, Mr. Superstar Surgeon, Dr. Starnes himself(!) was standing in our room. He said something that made my jaw drop. Thursday. He said he would do Santi's Glenn on Thursday. Like this week, Thursday. I could not believe my ears. Mostly because we had heard that he was booked for the next week or two.

After reviewing Santi's chart, the images from the heart catheterization and knowing that he's been struggling with his sats even on 2 liters of oxygen, Starnes feels like this is something that needs to happen ASAP.

By age, Santi is a little young for the Glenn. It usually happens at 5 or 6 months old. Santi will be 16 weeks on Friday. However, by size, he's ready. Our hungry hungry hippo weighs 14.6lbs already! Abe and I knew this day would come, we just didn't think it would be this week. We are thrilled that Starnes is making time for us and we know our little love is in the best hands.

I know we have a lot of people praying and sending us all their positive energy. We certainly feel the love. Please continue to keep Santi in your thoughts on Thursday as he undergoes his second open heart surgery.

Hospital Life - day 17

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{I wrote this this morning, but then the day got busy and it got better. I thought about just deleting it. I decided to post it anyway because even though most of my days are good, I still have moments of sadness and I don't want to censor that.}

It's barely 9am and its already been a rough day.

The past week has been so uneventful that I guess I got used to everything being calm around here. Last night Santi's oxygen saturations kept dropping, then lingering in the mid 60's. They gradually bumped his oxygen up, finally settling at 1.75 from .50 liters. Then this morning we had to change the tape for his nasal cannula, which isn't a big deal, but he was fussy. It's hard to see him so uncomfortable. He just wants to rip that oxygen tube off his face. And finally when it was time to run the antibiotic through his IV, the IV started to leak. Uurgggghhh, which means he needed to get a new one, which means more tears.

Today is a day that I've needed to remind myself to be strong. Being here around the clock for 17 days has left me a little fragile. I thought the closer we got to leaving the easier it would get. But this morning, seeing him get another IV brought me to tears and reminded me that it's far from over.

The nurse was great. The IV was in in no time, his tears dried up and before I knew it he had fallen asleep. I just broke down and wept watching him sleep. Getting poked with needles is "normal" for my son. He doesn't know any different and that breaks my heart to pieces.

Six days to go

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I've said it before and I'll say it again, living at the hospital is strange. But I honestly don't mind it, so I guess I'm strange too.

Abe and I joke that it's kinda like being in jail, at summer camp and part of a research experiment all rolled in to one. I spend all day in our room (jail/research experiment), with the exception of an occasional jaunt down to the cafeteria (camp!). I always wait until Santi is sound asleep before sneaking out and the few minutes I'm gone are fill with anxiety that he's going to wake up and scream his face off. That's only happened once. Don't get me wrong, I'm not complaining about being in our room all day. I stay by choice. The antisocial part of me finds comfort in the fact that I have nowhere to go and no one to see. I walked across the street to Vons yesterday to get a deli sandwich and I felt like an alien. It was weird to be around that many people. I couldn't get back to my room fast enough. Aside from all the people freaking me out, fresh air and sunshine soothed my soul.

Sometimes I pretend like I'm in jail, I roll out my yoga mat (they have those in jail, right?) and I try to see how many push ups I can do. I can only do 8...so that was a fun 20 seconds of make believe. Other times I roll out my mat and actually do yoga. Having my mat here has been the best distraction. Santi usually takes a long nap in the morning, like an hour and a half or so, and that's when I take some time to clear my mind, focus on my breath and work out the kinks.

Today is the 4th of July and I will not be sad for one second that I'm not sitting in traffic or surrounded by people drunk with patriotism. I'll be eating ice cream in my room looking for fireworks from my window. Six days to go!

Hospital life - day 12

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First things first, Santi is doing great. Do I overuse the word "great" when describing how he's doing? Probably. He's wonderful, he's fantastic, he's outstanding! Definitely back to his old self, maybe even sweeter and cuter than before.

Life in the hospital is strange. You'd think that time drags on. Oddly, it doesn't. The days are flying by. If all goes as planned we'll be released on 7/10. That means today is day 12 of 20...we're past the half way mark! During the day we live in 3 hour increments of eating, sleeping, pooping and playing.

Santi is now exempt from the midnight and 4am vitals, so we are both sleeping through the night, kinda. He's not doing as well as he was before this little adventure. But he's doing pretty good. He's had one night of 7.5 hours of sleep and one incredible night of 9 hours. His current pattern goes like this, bath and bottle around 9pm, asleep by 9:30pm. Wakes up around 2am for a bottle. Then back to sleep by 2:30am until 7am. I'll take it!

Exactly two years ago I was in Yosemite doing my first Vipassana. Vipassana is a 10 day silent mediation. No talking, no reading, no writing, no exercising, etc. Just meditating in silence from 4:30am to 9pm. Your probably thinking "oh my goodness that sounds like torture!" But I loved it and I look forward to doing it again someday. I'm thinking about that experience right now because I must have done it to prepare me for this experience.

But it's not like I'm alone. Abe and his parents have been here everyday. My parents visited this weekend. And between my phone, iPad and yoga mat I have plenty to keep me entertained.

I'm relaxed, I'm smiling and I'm making the most of this unique bonding experience with my son.

CHLA - day 8

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I was holding off telling you this because I just couldn't believe it was true. But it is true, so now I'll tell you.

We have been sentenced to 14 more days at CHLA. (Seriously, most celebrities spend less time in jail after committing a crime!) The only way to effectively squash this infection is through IV antibiotics. In order for Santi to get the IV antibiotics every 8 hours, around the clock, he has to stay in the hospital. And if he stays, I stay.

I'm a little devastated and a little ambivalent. It's so hard seeing your baby in the hospital, but I'm happy to be here under "good" circumstances. I realize with his condition we could be in the hospital with something much more serious at any given moment.

We are still in CTICU. Santi is having some trouble weaning down his oxygen. He is down to 2 liters, but we'd like him to have stable sats on less oxygen, like .5 liter. But hey, we have two more weeks to work on that...there's always a bright side.

Our sweet Santi is pretty much back to his charming little self. I've put my foot down with night time interruptions, well, and interruptions in general, so that we can create a familiar, structured environment. I'm not very popular with the nurses, but who cares?! I'm not here to make friends, I'm here to protect my son.

We are his advocates, his voice and his protectors. This experience has made us truly feel like parents.

CHLA - Day 6

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Just a quick update to tell you that Sweet baby Santi gave us some smiles today!

Our little love is doing so much better. He hasn't had a fever in 2 days. The pulse returned to his foot. His X-rays look good. His echo looks good. They removed the NG tube (which was never used). He is now on 3 liters of oxygen with sats in his 75-85 range. I was finally able to feed him today for the first time since Sunday morning. And he just acts like he feels better.

He is on antibiotics and probably will continue them for two weeks. They are working on weaning him to a lower amount of oxygen. Dare I say... He appears to be on the right track to go home later this week, Thursday perhaps?

I have a mouthful to say about some of the nurses here. But I'll save that rant for another time. Right now we are just focused on staying positive and helping Santi fight this infection so he can come home soon. ❤❤❤

CHLA - day 5

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Thing are looking better.

He's been in CTICU (cardio thoracic ICU) for 24 hours and I see a lot of improvement. He hasn't had a fever since yesterday evening, yay! And they "think" they have identified the culprit causing us all this trouble.

As it turns out, it is not a gastrointestinal infection. His blood labs grew a bacteria called "gram positive cocci." It's a type of staph infection and the doctor told me he probably contracted it here in the hospital. It could have happened during the cath or during the absurd amount of blood draws and IV attempts while he was recovering. (Seriously, his left arm looked like a pin cushion from all the failed attempts to draw blood. We finally started requesting a certain nurse that could get blood the first try, everyone else would just poke and poke to no avail. Pure torture for him and us). Anyway, we're still waiting to hear if his stool samples tested positive for anything. He is on a strong antibiotic to fight the gram positive cocci, so far, so good.

The bad news is that his sats have been all over the place 58-83 and he's on 6 (yes SIX) liters of oxygen. His normal range is 75-85 on .5 liter. He has not been allowed to eat since yesterday afternoon. He is on a fluid IV to keep him hydrated. He also has an NG tube (feeding tube from his nose to his belly) but this was not put in so he could eat, it was put in to allow air to escape from his belly because he was having severe gas pain. He won't be able to eat until his sats are stable on 4 or less liters of oxygen.

The good news is that he and I both got to sleep last night. In ICU he has one dedicated nurse and she's pretty much the only person who comes in during the night. They gave him medicine to keep him comfy and he's bothered as little as possible. I stayed here again last night but since he's not eating, I was able to sleep all night, with the exception of pumping at 4am.

I know there's a lot of info in this post. Abe did a great job of summarizing what's happening:
We are in ICU now. Santi is sedated and getting sleep, we've finally received some tests back and one has confirmed he has a bacterial infection (that they admit he probably got from the hospital) and he is now being treated for that. Once that is taken care of he should be getting/feeling better. Everything snowballs into something else- he got an infection, his body creates a fever to fight the infection, the fever takes his oxygen to heat the body, then he needs MUCH more oxygen so he's on a high flow oxygen in icu, high flow oxygen doesn't let you eat because of the amount of air that could get trapped in the stomach, he can't eat so he has a feeding tube and iv's for meds, can't sleep if hungry so he needs to be medicated. Sucks. And on top of all that, poor guy has to keep getting pricked for blood test and changing iv's from his arm to foot to arm.

We've had a wild few days. But I believe the worst is over and soon enough we'll have our sweet, smiley, Santi back in our arms.