Sunday, May 26, 2013

Some thoughts....( I know it's late, I'm going to sleep)

What do you do to get spiritually fed? I asked myself this question, as I was laying with Leah tonight.
As a child I was always raised Catholic, and to believe that if I did good things now, then later I would get the reward of heaven. I can't say I always felt like this was true, but I followed it because it was what I was always taught, especially once I started catholic school in 4th grade. However, I was also taught by my mother that we are all part of nature and we are connected to all livings things on this earth, that we should take care of our planet, as its our home, and the home of our future generations. I always felt an affinity towards animals (neighborhood squirrels, specifically) and felt that I could communicate with them, and not in the Dr. Doolittle sense where I knew what they were thinking, but more in a intuitive way, where I  felt some sort of connection with them. And exploring nature was always a fun game that my mom would have us play, especially when we'd go on random road trips along the coast of California. I never felt the peace in church that I would feel while being around nature. Begin stuck in a room listening to things I didn't understand or care about, was always boring to me, or when I did pay attention, I always felt like God was this person who had his own set of rules and if you didn't obey, you'd be punished. I didn't like that too much, nature didn't give me that; it just allowed you to be present, in that moment with the earth, and connect to the life around you, in the trees, in the earth, in the insects. 
Moving to Peru and being immersed even deeper into Catholicism, I couldn't escape it, I had to believe those teachings and it was drilled into my mind as often as possible. God loves me, and if I follow what he has asked me to do, I will be not just a good person in this life, but in the afterlife, I will be rewarded with heaven, instead of hell. 
 I never really thought about my relationship with god until tragedy hit my life in the form of Leah's illness. At that point, all I thought about was what I could have done wrong to make god do this to me, to my child and to my family. How can someone who is supposed to love me unconditionally hurt me and my child and my husband this way? What kind of God is so cruel that they would harm an innocent 2 month old baby? And then I felt anger. Angry that a god, any god would do this to a child. Angry that my life was changing and that my hopes for this child were crushed in a matter of days, weeks and months. Even though I tried to convince myself that Leah was here for a reason, god put her here so that she could teach the world something, I was still angry that it was MY daughter who was tasked to do gods teaching. Why not someone else's child? Why my child, hadn't I suffered enough in my life? Hadn't my husband, and my mother suffered enough tragedy that this too, was now being taken away from them? I would cry so much, asking god, the force, the universe, whatever to cure my daughter and make her better, to end her pain and struggles. 
Over the past year, I've come to realize that I was wrong. God wasn't punishing me, or Leah or my husband or my family. We punish ourselves, We get hung up on what our expectations are for the future and when they don't match what we thought they would be, we get angry and frustrated and we blame ourselves and  God but we don't see the world as it is. We don't appreciate this moment in time, the gift of just today; the fact that every moment with her is a gift and it's not a curse. Every day we're changing and she's changing, she's growing; even though they told us that she wouldn't grow, she still growing. Now, when I need to find solace in my spirituality I don't feel the need to go to the temple or church or any place of worship and I only need to go to be with her.
I feel her heartbeat, her breathing, the way her skin feels against mine, the soft touch of her hair and that gives me peace. Being completely absorbed in this moment with her feeds my soul and refuels my spirit. I feel this also when I go outside and meditate in nature. Being in that environment and just reconnecting to nature and our roots as living beings, put my mind and my soul at ease. But I feel it most intensely when I lay with Leah, and sing to her or caress her hair and her face. Whenever I stretch out her muscles and move her arms and legs around, I feel like I am connected to her. 
I remember when I was pregnant and I would do yoga and meditate and I always sensed that I could feel her spirit, inside of me. When she was born being so close to her and feeling that skin to skin contact that is encouraged when babies are newborns, I felt it then as well. A calmness and serenity that just obliviated any concern or unease from my mind. I don't believe many parents have a chance to do this with their toddlers. Most toddlers are too hyper to want to snuggle with their parents, or by the time they are tired enough to do so, the parents are so exhausted they just want to sleep themselves. I'm sure there are many who can, but i don't think its very common. I feel blessed that I do, despite so many things that I can't do with her, I am lucky that I can still lay quietly and peacefully with her and feel overwhelming joy for the fact that she is alive,and that she was once me. Her whole self is a physical representation of the love that my spouse and I have for each other. And regardless of how daunting all the doctors told us her future would be, she's still here with me 27 months later. 
Many people have told me that they are in awe of that fact that I've been able to deal with all these difficulties with a smile still on my face, pretty much 24/7, but for me it's quite simple. I've stopped thinking too much about tomorrow. And because I've done this, I can enjoy myself today and in every moment I spend with her and my loved ones. I've realized that no matter what the future may bring, I don't know what it will be, I can't predict what will happen tomorrow, and more than anything, there is NOTHING I'll be able to do to stop it. I can prepare for it, mentally and emotionally, but I cannot stop it from happening; the same way I can't stop an earthquake from hitting or a volcano from erupting or a meteor from crashing into the planet and destroying us all. I can try to do as much as I can for my daughter, to try to get her the best care, and research any possible treatments, and make sure that she is comfortable and her quality of life is good. But can I stop her from passing? No, and no one will be able to when that time comes, it will happen when she's ready and she probably isn't ready yet. The same way I can't stop my mom or my spouse or myself from passing or my friends and loved ones. We'll all pass someday and fade away back into the cosmos where we came from. But I don't believe that heaven is something that we are rewarded with in the afterlife, I think our chance at finding true happiness and peace is here, during our lifetime. Finding the beauty and joy in each day, which is a gift. Sharing love, compassion, feeling empathy, and understanding others, who may be suffering from their own problems that you don't even know; this is what feeds our souls, and it makes us grow. Not just as humans but as living beings.
I know now that no one is punishing me or my daughter, but she is here to teach a lesson. But now I know that lesson  is for each person who knows her. For me, I have become a much better person, a happier person, a healthier person, a less selfish person and a much more spiritually fulfilled person because she is in my life. All she knows is love, and everyday I get to bask in all this love that we both create together, and I will enjoy each day as it comes, whether it be easy or difficult.
So, what is it that feeds your spirit? ( that's not a rhetorical question, I actually am curious) 
Good night, and peace
Frani

Ps : I just want you to know that I respect all belief systems and I encourage everyone to find spirituality in whatever religious philosophy speaks to you. Just want to make sure people aren't offended by my remarks about Catholicism, as this is just my observation, and I know everyone interprets things differently 

Monday, May 20, 2013

Updates! Emergency at the beach, bring your kid to work day and mother's day Zev's b-day weekend

Hey gang
Long time no see, I know. I just have a few moments to try and give a quick update on the latest stuff that's been happening.
We are back in the PICU at Santa Monica UCLA Hospital. She has a UTI, and a possible respiratory infection. She is currently on Vancomycin and Cefepime to fight off the UTI, and the cultures haven't come back from her trach secretions yet, so some bacteria looks like it's growing out, but we dont have the specification yet. This might be a longer stay than we anticipate.
So, here's how our weekend went, we went to visit our good friend Jon Zamkoff at his apartment in Hermosa Beach on Saturday morning, and planned on staying there for most of the day, with our nurse Richard, meeting us there at 3pm. 
Ready to hit the beach!
We got there and got Leah situated first, gave her meds, feeding and just hung out at his place from noon to about 2:30, we were with Roxy as well, since she loves the beach, but we ended up leaving her in his apartment, since we found out the beach didn't allow dogs :(
We walked a couple blocks to the beach with Leah with our caravan of stuff, and it probably took us a good 20 minutes to get her from the boardwalk to the beach shore, since we had to drag everything in the sand it was really heavy, but we did it.





We parked her right in front of the lifeguard tower, just in case we encountered any issues. We were probably there for about 10 minutes, when things started to get a little exciting. I jumped in the water as soon as we got there for a quick dip and when I came back, about 10 minutes later, we heard the pulse oximeter alarm going off. We typically don't really worry about it too much, since we've had issues in the past where it doesn't pick up the signal accurately and will show that she's desatting, but she isn't, it's just the sensor. So, we noticed that she was at about 92%, and it looked like it wasn't picking up too well, so we changed the sensor out for a new one. That one was also showing that she was desatting, but it also was having issues reading well. I noticed that her face was really pale, and her secretions from her mouth were really dry, but I thought it was most likely the wind, and it was hard to tell if she was really that pale, because the sun was just so bright, everything gets sort of washed out when the sun is so blinding. After seeing that she was indeed desatting on this new sensor,when we finally got it to read well, we took things one step at a time. We made sure that her oxygen tank was not empty, check; we listened to her lungs and suctioned her to remove any mucous plugs, check; we pumped her oxygen up from 3 liters to 8 liters, check. She was still lingering at 90%, and not coming back up despite her lungs sounding clear and her oxygen going up, which was a little worrying. So, we decided to bag her, which is basically using the manual CPR bag to push air into her lungs instead of her vent. She was of course sleeping right through all this, and her heart rate was really low, like 110 bpm. As I started bagging her at 8 liters, she slowly was coming up, but only staying at like 96-97%, instead of 100, where she normally is. At this point, Zev walked over to talk to the lifeguards and get them prepared, in case we needed their help, while I bagged her. I switched her back to her vent when she got up to 98% and she started dropping again to 91%, so I went back to bagging her, but even bagging her she was going down and when she got to 83%, I told my friend Jon to get Zev and the lifeguards so they could assist. I didn't want her to continue to drop and if she couldn't hold her sats, we'd need an ambulance ASAP.
Lifeguards came over and we started telling them everything that happened, and they helped us move her from her chair to the blanket on the sand, and that's when she woke up. And boy was she pissed! She started holding her breath and posturing, so of course her sats we're not coming up. On top of that, she was due for a cath and had to pee, so she was trying to pee at the same time and seemed like she was oin a lot of pain. After we calmed her down for a few seconds, she started coming back up, and go up to 100% again, though by that point, the ambulance had been called and they got there in record time, I don;t even know how long it was but it was like one second there was nothing and all of a sudden ambulance, police and firemen were all there on the scene. Or course, people were looking and asking what was happening, but I ignored them. She was stable at that point, but we wanted to get her to a hospital, since we weren't sure why she was desatting. They told us that the closest hospital probably wouldn't be able to handle her and that we should take her to the nearest hospital that had a PICU, which was  UCLA Harbor General hospital, in Carson, which is about 25 miles from our home. 

Zev looks to the lifeguard station as I bag her
Lifeguards arrive and call for an ambulance

Taking her pulse, to make sure our monitor is working

I rode with her in the ambulance as I continued to bag her, and the paramedic told me "You obviously know what you're doing and you're doing an outstanding job, just tell me how I can support you and I will", he was really great and helped me do stuff like turn on the suction machine so I could suction her and supported her head while she was on the gurney. I thought it was funny though because her kept telling me that I was the expert and he was just there to help out, which was true I guess.
Jon bumped into our nurse Richard who was just arriving and they drove with Zev to the hospital to meet us there. We were in the ER for a few hours then were moved up to the PICU. You would think that if a hospital says "UCLA" in front of it's name that they would have all the same records as the Westwood and Santa Monica hospitals, but alas, they did not. It's only a UCLA teaching facility, and an LA county hospital, so the doctors are UCLA, but that's about it and this hospital was so run down and out of date, it was frightening. Since it services all the east and south LA area, it can get pretty sketchy there and they had a security gate similar to the airport with metal detectors and security guards patting you down as you came in. The PICU was 1 medium size room with all the beds separated by curtains and 1 chair for you to sit on beside the bed. When we asked how long she'd be there, they said probably for a few days and since one of us always stays with her in her room at night and at all times, we didn't know how that would work there. They told us tehre was a family room outside the PICU, but we didn't see that as an option either. At this point, I had gone back to Jon's place to shower and change (I was still wet from getting in the water and in my bathing suit and a dress, so it was cold) and Zev stayed with her. He asked them to transfer her to our UCLA hospital since they have all her records and know how to care for her really well, and these people didn't even have any info on her and we didn't want to leave her alone there. They told us that it was extermly unlikely that they would transfer her, since it seemed to be only a UTI, and it was unheard of for them to transfer someone for that. "Just call them" was Zev's reply, and they did, and they were told by the Westwood PICU team "We want her, we'll send a transport to go pick her up tonight". Lol, they were so surprised, "Do you guys know people over there", they said, "They know Leah" we said, and we told them that they all have taken care of her since she was 2 months old and know her really well. 
Their pharmacy was also not even stocked with the medications Leah needed to get, so I had to drive home and get them, which I thought was so crazy. Their solution was to write us a prescription and have us go buy some at a local CVS, but it was just easier to go home. It's really sad to see that there isn't enough funding for county hospitals and since they services mostly low income and poor people, they don't have the same infrastructure that a hospital like UCLA does. I mean, even the PICU, only had 1 desk and it was crammed with stuff, there was no space for anything.
In the ER with nurse Richard

Anyway, she arrived at the PICU in Santa Monica close to 2 am, since transport took a long time and they had other patients to move. So, we've been here since Saturday, and right now we are still waiting for the trach cultures to come back, and her x-ray apparently looked worse than it did previously, so it could be some sort of pneumonia, but they are not sure yet. We don't have an estimated time of when we'll be going home yet either.

Let's see, we have other fun stuff that happened this past week.
First there was a mystery scratch on her forehead that we noticed on Thursday, and Desi think she may have accidentally done it, when Leah was on the potty and she tried to grab her so she wouldn't fall, but she's not too sure. Not too bad but very noticeable, we've been treating it with some Neosporin.
Here's a pic: 

It was bring your kid to work day last Wednesday at my jobRiot Games, so we brought her to my office and did a bunch of fun activities, like drawing and sang songs, then had lunch and took some pics at the photo booth. It was so cool to see how much all the little kids have grown since I knew a lot of people had had kids recently and they just get so big so fast. A lot of kids were curious about Leah and her tubes, but we just explained it to them in an easy way. Nurse Desi came with us and was having fun as well, it was definitely a change of scenery for her too.
Add 

 








Last weekend Zev and I took a short camping trip since it was Mother's Day and Zev's birthday the day after, but we needed some time to be alone together and just get out of LA for a little bit. My mom as always, held the fort and supervised while we were away. We had been thinking of going to Catalina Island, but it was too expensive and we didnt want to spend a lot of money, since we're on a budget. We decided to invest in some camping gear, a cooler, and some snacks and drive up the coast on PCH. My mom used to do the same when I was young, we'd just drive and stop where we wanted to. So, we had no plans, just drive north and stopped at various places on the way to check out the scenery, and left on Thursday afternoon. By sunset we were close to Morro Bay and they had a campsite close to the beach so we stopped there for the night, pitched our tent and camped there for the night. It was really great, since we had a nice firepit, some hot dogs and marshmallows, and we had so much time to just talk and reconnect, with each other and with nature. Friday morning we kept driving, and stopped at Hearst Castle, which was INCREDIBLE! I want to go back just to take more pictures and draw some of the marble sculptures in the gardens. We got to stop at abunch of different state parks, and take mini hikes to see the view of the ocean and fianlly stopped at Big Sur State Park and camped there.We took the Pfeiffer falls hikeing trail and hiked up the mountain to the waterfalls, which were off limits, but I totally didnt care and climbed up there to take a picture, lol :P. We took off the next day, since we both wanted to get hom saturday so taht I could spend time with Leah on Sunday for mother's day. We encountered some chipmunks that morning hanging around our campsite, looking for scraps,a nd I threw them some trail mix since we were on our way out. Apparently one of them snuck into our car and started eating more, since 10 minutes later Zev opened the car and caught him in the act. We successfully got him to get out and took off to Carmel, our final stop before heading back down the 101 to LA. Carmel was so amazing, I wanted to stay longer and paint, but we didn't have much time, since the drive was so long, but i really want to go back there someday and stay for a few days. We had planned to go back camping with Roxy this weekend, since it's a holiday on Monday and I have it off, but it will depend on whether we are still here in the PICU or not, we are still going to try to go. And the following weekend, it'll be Leah's turn to go camping with us at Camp Bloomfield in Malibu with the Junior Blind of America for 3 days. We're really looking forward to that trip, and they have all the required electrical outlets that she needs, so it should be pretty fun.
Morro Bay

Morro Bay marina

San Simeon valley view from the Hearst Castle

Casa Grande front door

Neptune's Pool

Neptune's Pool with Casa Grande in the background



Lounging by the pool


Casa Grande

Indoor "Roman" pool



Our campsite at Big Sur State Park



sketching

the trees are ginormous!

no, really, they're huge
i'm a tree hugger, deal with it


This tree was so old!


older than the plague


I'm like a bird!

totally against the rules, but I did it anyway

the magical forest


That's it for now!
I will update when we know what the cultures come back as
Peace!
Frani

PS: sorry for the wall of text, lol