Writing...

I was listening to an interview with Amy Grant whose music has helped me through some very rough times, and she was talking about songwriting and it really resonated with me. I thought about what she was saying in terms of writing in general and here's what she had to say:

"It's an amazing experience for any of us to have an idea that we find incredibly compelling... (and when writing...) you have to sit still and think about something. If I'm trying to communicate this thought, first off, what do I really think? What do I really believe? And so I would just say, always be genuine in your writing. And realize that if you say something that matters to you, whether it's happy or sad or an eternal thought, or just something about what you ate yesterday; if it matters to you, there's probably somebody out there that it's gonna matter to as well." (Amy Grant, singer, songwriter)

Her advice has inspired me because so often I feel that when I write, it needs to be something really deep, or about a big event, but perhaps it's time to change my thinking. Perhaps it's time for me to start writing again... simply writing about what matters to me. 

Somewhere Down the Road - Amy Grant

‎"Somewhere down the road
There'll be answers to the questions.
Somewhere down the road
Though we cannot see it now.
Somewhere down the road
You will find mighty arms reaching for you.
And they will hold the answers at the end of the road."

An article about Christopher's PICU Doctor was written up in the San Francisco Business Times and Christopher was mentioned in it...

http://www.childrenshospitaloakland.org/about/2012healthcareheroes.asp

Nick's Good News...

Nicholas with his Dr. in Guatemala City on the day of his release from the hospital

I'm happy to report that Nicholas' INR has finally reached his goal range so he is going to be able to travel home to Los Angeles at the end of the week! We are very relieved to know that his body is responding to the Coumadin he is taking and this will protect him from developing further blood clots. He is planning to come up to the San Francisco area in about a week and a half to attend the wedding of some close family friends and we are really looking forward to seeing him and spending the weekend with him! Thank you once again for all of your support and your prayers on Nick's behalf. We are so very blessed and thankful that he is still with us!

Nicholas' Hospitalization - 3

There's been a bit of a delay in getting my update on Nicholas out because I've been traveling and enjoying celebrating my parent's 60th anniversary with my extended family in Vail, Colorado this week.  Nick is doing great and was released from the hospital last Friday (much to my chagrin because his Coumadin was not yet at a therapeutic level). He is now back in Antigua and feeling so much better! He traveled to Guatemala City on Monday morning to have his blood tested but his INR is still much too low at 1.37 (his goal range is between 2 and 3). His doctor increased his Coumadin from 5 to 10 mg per day so hopefully his INR will move up. He will have his blood tested again on Thursday. We're perplexed as to why it is moving so slowly, much more troubled than his doctor in Guatemala seems to be, but he can't travel by air until it is in the goal range. We are working with my Pulmonologist to get to the bottom of this issue, whether it be some sort of genetic resistance or something else.  Nick's been walking daily, spending time in the park and at his favorite cafés, and had a surprise visit from a dear friend in Mexico City on Sunday. Being out of the hospital has been wonderful for him and he's glad to be back in his home-away-from-home with Carlos, Jeanette and his friend, Will who is visiting from Los Angeles. Once he returns home to LA, which is currently scheduled for Sunday, July 29, he will find a Pulmonologist and Hematologist to follow up on his care.  Thank you again for your prayers, messages, phone calls and emails. We are blessed to have an amazing community of support and please know how much we love and appreciate all of you!

Nicholas' Hospitalization - 2

Nicholas continues to improve and is able to walk a little further today without getting too winded. He was disappointed this morning when his doctor told him that his target INR range is 2 – 3 but his INR was only 1.16 this morning. Yesterday they increased his Warfarin (generic Coumadin) dose from 5 mg/day to 10 mg/day and his INR went up from 1.05 to 1.16, so it is a very slow process. The other change they made was to switch him from the generic Warfarin to Coumadin. Hopefully this will speed things along.

He had an ultrasound on his legs this afternoon and they found that the clots he has have now attached themselves to the walls of his veins so the risk of those clots moving to his lungs is gone. The doctor also found several old clots (maybe a year old) in his legs so he has been very fortunate to remain healthy despite these clots but it is yet another reason for us to get to the root of the problem and for him to remain on Coumadin. One piece of good news we got is that the doctor mistakenly told Nick on Tuesday that the clot in his right calf was 3 inches in diameter when it was actually 3 centimeters in diameter. That’s about half the size we thought it was! I don’t know if it was simply an error the doctor made or if was a language barrier issue but we’re glad to know that the clot isn’t nearly as large as we had thought!

It looks like Nick will be in the hospital until at least next Monday, which is quite frustrating for him, but it will likely take at least that long for his INR to move into the goal range. The plan once he is released from the hospital is for him to go back to Antigua where he is living in the home of a host family that he has lived with off and on for the past 3 years. They are like a second family to him and he loves being there, so it will be a great place for him to recover. His friend from Los Angeles, Will is arriving tonight and will be with Nick for the next week in Guatemala, which will be really nice for Nick! He is planning to return to LA on Sunday, July 29^th and will continue to receive care from his doctor there. He will need to find a Pulmonologist and perhaps a Hematologist to follow up on all that has happened and to keep an eye on him.

Thank you again for all your prayers, emails, notes, phone calls and concern. It is so nice to know how many wonderful and caring friends we have in our life and we are so grateful for all of you!

Love, Laura

Nicholas' Hospitalization - 1

After spending 36 hours in the ICU, Nick has been moved to a regular room at the hospital, which is a good indication of the positive progress he is making toward recovery from his Pulmonary Emboli. He was on complete bed rest the entire time he was in the ICU and was being monitored around the clock. He is relieved to be out of there although it was of great comfort to know that he was being watched so closely.

We continue to be pleased with the level of care he is receiving at the hospital in Guatemala City. He is still receiving injections of Lovenox every 12 hours and is likely going to be on Coumadin for the rest of his life. Twenty-six years old is very young to have blood clotting issues and a Pulmonary Embolism.

We know that there is a genetic predisposition to clotting disorders on my side of the family as my mother has a history of blood clots, my brother, Scott had a PE when he was 49 years old and my other brother, Ken has had multiple blood clots. Our plan is to work with a Geneticist to determine what the gene or mutation is that causes the clots. If Emily and/or Christopher test positive for it, we can then get them on preventative care.

Yesterday afternoon Nicholas had an Echocardiogram and they found that the right side of his heart is quite enlarged. This is very common when having a Pulmonary Embolism as the heart becomes strained. His doctor feels that with time, his heart will return to its normal size.

Nicholas was in good spirits when I spoke with him an hour ago. He walked around a little bit (to the restroom and then over to the window) and became winded after that tiny amount of movement but this is to be expected. He will gradually be able to increase the distance he is able to walk as the clots dissolve and his blood oxygen level improves. His heart rate is still high (also to be expected) but his blood pressure is very good.

He will likely remain in the hospital until Saturday. He needs to be at a therapeutic level on the Coumadin before they will release him. He is not sure if he will stay in Guatemala City or go back to Antigua to recover for 10 days before flying back to Los Angeles. He will need to have his blood tested daily to determine his INR (International Normalized Ratio), which is a universal number that indicates how quickly the blood clots based on his PT (Prothrombin Time). Once his INR remains at a consistent level (which takes months), he will be able to stretch out the amount of time between blood tests, eventually needing to go only once a month. I still go every other week (1 ½ years after my Pulmonary Embolism) because my INR tends to fluctuate quite a bit but it has simply become part of my routine and I think nothing of it. I am just thankful to be on Coumadin and have peace of mind that the likelihood of forming more blood clots is extremely low.

Thank you for all of your notes of encouragement and for your prayers! We are so very grateful for all of you and thankful for God’s blessing on Nick’s life.

Here we go again...

First it was Christopher’s brain injury in April of 2010 and then seven months later, my multiple massive Pulmonary Emboli. Now it’s Nick’s turn.

He traveled to Antigua, Guatemala four weeks ago for a seven-week work assignment and we were fortunate to spend a week with him there for a family vacation! He noticed fairly soon after arriving in Guatemala that his breathing was quite labored while running but he assumed it was due to the high altitude. He’s used to running at sea level in Los Angeles and Antigua is at 5,000 feet. As the weeks progressed, he found it difficult to simply walk a block and by yesterday, walking from one room to another was enough for him to become out-of-breath. So he saw a doctor at a local clinic who said it sounded like he possibly had a Pulmonary Embolism but he sent him home with several syringes of Lovenox, an anticoagulant.

By the time Nick called us yesterday afternoon to talk about what was going on, he had contacted his medical insurance company and informed them of what was happening. Paul called Vivienne Newman, Christopher’s ICU doctor who put us in touch with a Pulmonologist at Stanford Medical Center. Our thoughts were that we wanted to get Nick out of Guatemala and to the States as quickly as possible so that he could receive proper medical attention. But both Nick’s insurance company and the Stanford Pulmonologist gave the same instruction to Nick… “Get to the hospital immediately!”

So Nick’s house father, Carlos drove him to the nearest hospital in Guatemala City and he arrived around 6:00 pm last night. They admitted him and began the process of running tests. They did and EKG, a contrast CT scan and a full blood panel. Within an hour and a half he had a definite diagnosis of Multiple Pulmonary Emboli. He has a large clot in his right lung and several small clots in his left lung. They gave him another injection of Lovenox, started him on Coumadin and moved him to the ICU where he is on complete bed rest. He will be in the ICU for at least 48 hours and then in the hospital until he is at a therapeutic level on the Coumadin.

Paul arrived in Guatemala at 6:00 this morning and I know both he and Nick were glad to see each other! After speaking with the Doctor, Paul said he feels comfortable having Nick at this hospital. It sounds as though he is receiving great care and there is no need to get him to the States at this point.

An ultrasound was done on Nick’s legs this morning that showed 2 blood clots. There is a small superficial clot which is inconsequential but the doctor also found a massive 2 ½” to 3” diameter deep vein thrombosis in his right calf. Not only is the size of concern, but also it seems to be moving very slowly with the flow of blood to his heart so they need to watch this one very carefully. He will continue to be on complete bed rest in the ICU until the clots begin to dissolve which will be monitored via CT scans. If the clot continues to move and becomes a threat, they will need to do surgery to insert a screen to keep the clot from breaking loose and reaching the heart and lungs. Surgery is unlikely at this point, though and the hope is that he will soon be at a therapeutic level on his Coumadin and will be released from the hospital by the end of the week.

Thank you for all of your prayers and well wishes! Our God is a great God! He has blessed our family in ways we never imagined possible and we will continue to put our trust in Him. Please continue to pray for Nick’s recovery and for safe travels for Paul and Nick when they return to the States. 

I Can Only Imagine

For those of you who know me well, you know that I rarely speak of my faith on my blog. I never set out to do (or not) that; it’s simply the way things have played out. But today is different for I feel compelled to write. And the words that are flowing from my fingertips speak of my faith in a God who is so much bigger than me. This God is forgiving… He loved me even when I didn’t believe I was worthy of His love. He is a God who waited patiently for me as I asked my questions; as I struggled to comprehend who He really is and how He can possibly know each and every one of us, down to the number of hairs on our heads. He is a God who placed people into my life... I call them my angels here on earth and I believe they were hand-picked by God to show me His love; to teach me His ways; to set the record straight in my very confused and frustrated mind. But through my struggle to know this God, I discovered that He was always there, that He never let me down, and that His love for me is eternal.

Today an acquaintance of mine passed away. To put it more accurately, Frank passed into the arms of His waiting God. He is no longer in pain and he is finally at peace. Though I only spoke directly with Frank a handful of times, I always knew of him as a prayer warrior. He and his wife, Coralie dedicated their lives to praying for others and I will never forget speaking with Frank shortly after Christopher returned home from the hospital after his accident; hearing him tell me of the hours he spent on his knees in prayer for my child. For that I will always be grateful.

Though I am sad to know that Coralie is now left here on earth to carry on without her beloved partner, I can’t help but think of the joy that Frank is experiencing at this very moment. There is absolutely no doubt in my mind that he is in heaven with God and I can only imagine what that must be like. There is a song by the group Mercy Me that has been playing in my mind all day long and I have always loved the lyric. It expresses so well what always comes to mind when I ponder the day I meet my God in heaven…

I can only imagine what it will be like

When I walk by your side

I can only imagine what my eyes will see

When your face is before me

I can only imagine

Surrounded by your glory

What will my heart feel?

Will I dance for you Jesus,

Or in awe of you be still?

Will I stand in your presence,

Or to my knees will I fall?

Will I sing Hallelujah,

Will I be able to speak at all?

I can only imagine

I can only imagine when that day comes

And I find myself standing in the Son

I can only imagine when all I will do

Is forever, forever worship you

I can only imagine

I can only imagine when all I will do

is forever, forever worship you

I can only imagine

Here's a link to the song if you'd like to give it a listen... 
http://youtu.be/9La_4svq8JI

As much as I am grateful for what God has blessed me with here on this earth, I look forward to the day I will see my God face to face. But for now, I will continue to do my best to honor Him and be a faithful servant. Here’s to you, Frank… you will be dearly missed here on earth but I can only imagine the party that is taking place in heaven.

Letter to Chris from Dr. Newman

Today Christopher received an e-mail from his PICU doctor while he was a patient at Children’s Hospital, Oakland 17 months ago after falling from a tree and sustaining a severe traumatic brain injury. The letter is so beautiful that I want to share it with all of you…

“Dear Chris, I am so proud of your achievements over the past year. Now I hear from your parents that you have passed or rather aced the sailing course and are a fully-fledged, certified SKIPPER. WAY TO GO MAN!!!!!. When I think of the defenseless young boy in the bed, coming out of your coma (as your Dad assured me you would), going on to Rehab and regaining your strength and thoughts almost faster than I could have dared to hope, I am proud to have had the chance to take care of you. We only provided the time for you to gain strength back and you and your family have done all of the hard work. KOL HAKAVOD, which means, "all of the honour" is due to you and your family. I pray that you will all go from strength to strength and that you will have many such successes. Please do keep me informed of ALL of your achievements, no matter how large or small. I look forward to seeing you and your family soon.
Your oh so PROUD Doc., Viv Newman PICU OAKLAND -- I hope that you might remember me a little.”

Knowing Dr. Newman and having the privilege of calling her friend is one of the blessings that came out of this unexpected traumatic experience and we will be forever grateful to her and the entire staff at Children’s Hospital, Oakland. My next (and very soon to come) blog post will be the most recent update on Christopher's miraculous recovery!

I’m writing! I’m writing! I’m writing! I can actually stay focused long enough to write! Oh, happy day!

Skipper Chris!

16 1/2 months ago he was in a coma fighting for his life, but today he passed his sailing test in the San Francisco Bay! Congratulations to my miracle boy, Skipper Chris!

soccer tryouts + christopher = frustration

Christopher’s neurosurgeon thinks he might be able to play soccer next season but since his brain is not yet healed, any physical contact is considered risky and is therefore prohibited. So there he stands on the sidelines, watching enviously while his peers engage in 1 v 1’s, vying for a spot on the team.

A year ago on this day, he had come out of his coma and was high on narcotics. He was sweet and funny, saying things like, “Hey Emily, there are two of you and you have, like 8,000 eyes!” and “Nick, your socks are fantastic and your shoes are sick!”

As much as my heart breaks for Christopher, I can’t help but be grateful to see him standing there, desperately wishing to be in the middle of the action. He has come so far, and this could have ended so differently. He will play soccer again; perhaps not this year, but that day will come. For now, I will count my blessings and give thanks for the life of my miracle boy.

Life As I Once Knew It...

life as i once knew it... there is no such thing. my life will never be as it was. that is not a good thing, nor is it bad. it just is. because of all that has transpired over the past year, i am a different person and i am forever changed.