Monday, January 16, 2012

A New Year, a New Hope...


Hello World,
We’ve been experiencing some bumps along the way, but before I start blabbing, I thought I would thank all of you that have sent in donations to help our baby Leah. Your donations have helped us get a car (that works),a new bed for Leah, food, clothing, utilities, rent  and even equipment that we desperately needed.
 Last year YOU donated over $65, 000.00 to help our Princess Leah! Life would have been so incredibly difficult if it were not for your amazing support. We THANK YOU, and send you much LOVE and PEACE.

And now to our regularly scheduled program…
When we last posted, we had to deal with several issues, including the fact that our baby Leah could be dealing with a Mitochondrial issue. Since then, we’ve had a few visits back to the ER and ICU at U.C.L.A..   I have to say, despite all the love we have for most of our doctors, every once-in-a-while we run into that 2% that make our stay a nightmare.
Leah began to have another set of seizures and we were off rushing to U.C.L.A.. this time around, we were greeted by one of our favorite doctors, Dr. Lerner. He has been part of Leah’s life since the very beginning. That day, he happened to be visiting the hospital reading a few EEG’s and saw that we were again in the ER.  Things went pretty fast with his help. He knew the nightmare we had last visit when we had to wait for almost 3 hours to get Leah help. We were told that incident caused the Neuro department to re-evaluate the way they did things.  The ER staff was quite helpful and most knew of her highness Princess Leah. From there, once it was proven that Leah was having another set of seizures; it was back to the ICU thanks to a spot EEG that was ordered by Doctor Lerner.
Leah continued to endure mini seizures. For most of her time in the hospital she was sedated. Frani and I kept looking at the video camera and EEG machine…not that we knew how to read it, but we still kept checking it wondering what was going on in her head.  There were no big changes while this visit took place.  
To make this update on Leah’s stay short, I’ll cut to the nightmare. Like I said, most of the time it’s been satisfactory, but the communication between departments and certain policies, make it atrocious at best. This time, they couldn’t wait to kick us out. I literally had a nurse asking me “So, where’s your wife?—Where are we at?”  How’s that for showing some love to a family that has had to endure the rollercoaster ride of their lives and has managed a bill of over 2 mil?  U.C.L.A. has a policy that if a child is on a vent, they have to stay in the I.C.U.. So, what do you do when you have a child that STILL needs to have a vent, but cannot be out on the “floor” and is “not sick enough” for the I.C.U.  either? You see what I mean? We were in POLICY LIMBO. Then to top it off, they didn’t want to release an oxygen tank to us despite the need that Leah has to get her home? It’s a hospital and it can’t spare 1 damn small tank for this baby?  The respiratory therapists on duty could not believe it either. Most of the RT’s have become family as well. They love our Leah and have seen her fight the fight. Jaws were dropping as this same nurse began to make it an even bigger deal. They were making some phone calls and someone (who we can’t mention) gave the okay but told the same “nightmare nurse” not to make this a big deal and that he would approve of the oxygen tank leaving the hospital. It was followed by him telling her “This conversation never happened”. Well, you can just imagine what she did. She ran to the charge nurse and told her. The S*&t hit the fan. Meanwhile, I can’t believe what is going on. Is this really happening? The RT’s were trying to calm me down. I had everything ready to leave and a wheel chair waiting. Remember, this is happening because they need space in the I.C.U. and over a little oxygen tank my child needs to get her only 15 to 20 minutes away. We’d rush back home and to the hospital but it was rush hour, and they REALLLYYY wanted us out. Poor Leah, was unaware of the stupidity that revolved around her. Then our savior arrived! You have heard of her on here already several times. Her name is Dr. Ischander. She walked in, in the middle of all the drama. By then, I was so angry, tears were about to start coming out. She looked at me and I explained what was going on. The she said “this baby is NOT going anywhere!” The nurse looked a bit puzzled.  “This baby needs to be on the new vent settings for 48 hours before she can be sent home. If for whatever reason the vent settings are not right this baby can have serious problems. She stays”. Hurray for Dr. Ischander! So U.C.L.A. gets a 10 for making the admitting process a good one, and a 0 for the discharge. Inconsistency can ruin a hospital.
Home for  the Holidays
After our 48 hour stay and being released from the ICU, we made it home safely. Leah was extremely sedated as we tried to keep the seizures at bay. It was very hard seeing our little girl so sedated. Her eyes seemed to float in opposite directions; she trembled and was having these weird movements that I can only describe like a startle. Honestly, we were happy to have her home for the holidays.

Chanukah was really one of the best for me. I had my baby home and we were happy. My mom was finally able to make the trek all the way from North Carolina. My mom has had a few health difficulties and financially was not in a place to make the trek, but luckily we had one of Leah’s benefactors foot the bill.  It was great seeing her and it was also such a joy to see my mom holding our little Leah. She was so happy to make it out here too. I’m not going to lie, it’s always great to have my mom give the big hugs when needed.
 While Frani cooked one of the most delicious dinners ever, we placed all the new ornaments throughout the house and invited some of our friends to celebrate the Festival Of Lights on the first day of eight. Our friends,  Mike and Rachel, came over and we lit the first candle. Chanukah now means a little more, because for us, Leah is our little light. And like the Maccabees who fought against the Assyrian Empire she is a fighter too. She is also like the oil that they found for the Eternal Light at the remnant of the Temple they tried to destroy. The miracle is they only found enough oil to last less than a few hours and it lasted 8 days. Leah is our little light. One of Leah’s names is LUCIA. It means light in Italian (Frani’s dad’s side is of Italian decent).
Although Chanukah was a happy 8 days for us, Leah had some rough times as she recovered from her seizures. I kept telling myself not to judge her health because I knew that part of the issue was all the sedation they had given her. Frani and I would caress her beautiful face, cuddle with her in her new single bed we got (with the help of donations), and sing or read to her. Regardless of what they tell us, we will continue to try our best as parents!
Christmas, was around the corner and we knew that there would be a possibility that we would not have nurses. Betty one of our amazing nurses, came to the rescue and stayed with Leah for half the day on Christmas. Thank you Betty. Our other nurse and newest member Jill, also came for half a day too. So it wasn’t too bad. Thank you Jill. Still, Frani and I took shifts taking care of Leah when we didn’t have nurses.

Then we had a visit from the manager and Chef’s of MASTROS! It is a 4 star restaurant in Beverly Hills! One of Leah’s benefactors and friend Phil, managed to pull that off for us! What an amazing meal. We had steaks, lobsters, shrimp (hey, we’re not Kosher), mashed potatoes, chicken, green beans, bread, cream corn, two cheese cakes an two bottles of wine! We’ve never eaten such amazing tasty foods.  Needless to say, it lasted many days and our tummies were well nourished thanks to these wonderful people. We shared our meal with some friends and also our nurses.
Right after Christmas we had the most enjoyable time as a family. We had been given a photoshoot by an amazing photographer named SIGAL! We happened to meet her at a cafĂ© around the corner from U.C.L.A.’s Hospital. I’m not quite sure how we started chatting but by the end of it she gave us her card and we were making a date for the photoshoot.
Sigal was amazing. She was so incredibly patient with us as we tried to maneuver around Leah’s machines and transporting her from her room to the living room area where the photoshoot was to take place. Frani was having a blast the night before choosing all the wonderful outfits for the shoot. We really had such a fun time with Leah. It was such a family day for us. Despite the fact that Leah was connected to so many machines and despite her sedation, it felt so good to be able to have a day where things just felt “normal” for lack of a better way of describing it. We were doing what most families do with their cute kids and taking pictures. Leah behaved amazingly and never had any issues with anything for all the hours of her shoot. Sigal eventually posted some of the pics on facebook. We were so taken by these pictures.  Thank YOU Sigal!!!! 
New Years was a little rough on us. We didn’t really have nurses and we took shifts taking care of Leah. Something we are now finding we have to do since the Nursing company hasn’t figured out they need to find a substitute nurse! But that’s another story.  Leah was still heavily sedated and I found myself praying harder than I ever had. I guess the lack of sleep was affecting me more than I would’ve liked to admit. I kept looking at Leah and hold her tiny trembling hand. I recited the prayers I was taught in Hebrew School. I’m not really that religious, but when you are in desperate need of miracles for your baby you do your best to make a better connection with The Eternal. I tried desperately to find a prayer I could remember correctly in Hebrew. I guess in the end,  I opted for good ol’ English. Frani was cooking and getting things ready, and it was just me and Leah. I began to think about all the supporters around the world that showed our Leah so much love. People from all religions were writing us now. Hundreds upon hundreds were telling us that they too were praying for her. The love for Leah went beyond religion. We had Muslims, praying for her and asking their Imam’s to say a special prayer for her. We had Catholics praying and having masses around the world and at the Vatican. We had one family make the trek in a winter storm to go to a Church in Canada where a Saint who had been given the gift to heal was buried. They even sent us a pic and video. Mormon’s were joining the fight too. Pentacostals, Charasmatic Christians, Methodists, Lutherans, Pagans, Coptics, and Jews; almost every major religion was now represented in our circle of prayer warriors! How amazing it was. No one cared whether we were Jewish or not. They prayed despite whatever faith they followed, because in the end they knew who they were praying too and why, and for that I love them all. With that in mind; knowing that I had the backing of all those people praying for Leah, I imagined all of us holding hands around the globe; our eyes closed and concentrating on the power of prayer.  All-of-a-sudden, I felt an amazing sensation throughout my body. I cannot truly describe this to you since I had never felt this before, but I would like to think it was indeed the power of prayer at work. I turned to the machine that read her heart rate and oxygen level and it was at the best place it had ever been! Leah’s tremors temporarily were stopped. You can think whatever you want, but I know what happened that night.
For those of you reading this, please continue to pray for her. As I tell Leah’s supporters, it’s not about sending  money to help out, it’s about prayers too. Even my Atheist friend said to me, “I don’t pray, but I’ll do it for Leah.”  Leah, my beautiful Leah, if you only knew how much of an impact you are having in this world.
Frani’s turn to write.Part 2 will come tomorrow! We still have so much to share.

Leah, hooked up to her EEG

 Chillin in the PICU
 "Nana" comes to visit Leah
 the 3 Esquenazi ladies (just 1 missing, Debbie)
 Makin' latkes on Channukah!
Our mini menorah
 Lighting the candles and saying the prayers with Rachel
 Love!
 Photoshoot!!

 Leah, being FIERCE!
 Sigal, Leah's amazing photographer


WHAT THE  DOCTORS AT CHILDRENS HOSPITAL SAID
GLOBAL SUPPORT FROM STAR WARS FANS AROUND THE WORLD INCREASES,
IN THE MAKING: THE PRINCESS LEAH FOUNDATION
MY SON NIC MOVES TO LOS ANGELES

3 comments:

  1. This was a beautiful post, brought tears to my eyes and I don't for one moment doubt what you felt and what you saw. There are rare moments when you know that G-d is there ... when you know your prayers are being heard. Several years ago on Yom Kippur I had walked out of the service to use the restroom ... when I came back my son (3 years old at the time) was dressing the Torah as my husband stood next to him ... I felt what you felt. The connection, the power, the presence. Treasure that moment through all the rough times and know that there is not a microsecond that passes that someone somewhere is not praying for Leah.

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