Dylan W Levy
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Transplant Day 7

2/14/2011

22 Comments

 
We apologize for the lack of updates, these are really stressful times and honestly finding a computer, let alone the time to gather thoughts is a challenging thing at this moment.  Over the last 48hrs a lot has transpired.

I got discharged from the hospital on Saturday morning and was some what relieved to get back to a normal house setting and maybe recoup better there, no offense against the hospital but lets be real...its not a hotel (the constant in/out of nurses, meds, vital checks, and just not being in your own bed is never easy).  The core of the issue is, I can't relax without my family.  I did attempt to take it a bit easy the rest of the day on Saturday and then come back to see Amber and Dylan on Sunday.  I found myself not being able to really eat, relax, or manage my overall pain all that well.  Even with the great support  from other family, its just not the same...and I missed my family terribly.

On Sunday (Yesterday), I headed to the hospital early to spend the day with Amber and D-man, it has been darn near a week since I had seen them for more than 5 mins, which in short was beyond unbearable to say the least.  We planned for what was to come, had executed it well but it became way more than I honestly thought it would be.  I never went into this with any preconceived notions that it would go one way or the other, I just knew we would do what we could to get through this time and make sure Dylan could have the best outcome. 

I arrived here early yesterday (around 10am), hung out and was enjoying us being a family again, it was really nice to be together.  Within the hour of being here, we got Dylan's lab results; the results showed that his AST, ALT, and a few select other liver functions had raised (as opposed to dropping, which is what is suppose to happen).  This alarmed the transplant staff, whom was very honest about everything and kept us informed of there concerns.  There could be many reasons as to why this was happening and they wanted to rule out a major one, which was that the Hepatic Artery was still flowing (during the first 7 days they worry about this artery clotting off and losing blood supply), so they called in the ultrasound tech to locate the artery.  The tech spent in upwards of 45 mins trying to find his arteries, I say arteries b/c when they transplanted my liver into Dylan, my liver had 2 of them (which apparently is EXTREMELY rare), Dylan's surgeon even mentioned this and said that he was possibly going to not hook it up but said there would be no harm in doing so (extra blood supply couldn't hurt that's for sure).  After all this time of looking and no success, the situation was getting very scary, we could see it on the tech's face (whom had been able to find it every other time he looked for it) and the transplant teams worries became more of an immediate plan of action.  We were told that Dylan would need to have a CT Scan to locate these arteries and see if they're still working, they would inject dye into his central line and take a scan to see if it has flow.  If it didnt have flow Dylan would be re-listed as status 1A = #1 on the national transplant waiting list and would be next inline for an immediate transplant.....again.  This was a thought that no words can explain and I have none to explain it now.

We were whisked off to CT, both Amber and I would be in the room holding Dylan's hands to keep him still and feeling safe.  We had a direct line view to the observation booth where they perform/review the scans.  We feel so blessed that my transplant surgeon was the on call liver doc for the week, as well as one of Dylan's other surgeons that was in his surgery, so familiar faces were present.  I couldn't help but look at these folks and there expressions to gauge what was going on while they were reading the images.  I could visibly see that things weren't looking good.  As you can imagine we held hope for the best, we were prepped for the worst, and the entire situation was so surreal, so unbelievable, and so scary to think that our son could go into immediate liver failure and face this whole process all over again.  I had such feelings of hopelessness, emptiness, and that the one gift I could give (myself/liver) and even that wasn't good enough.  The surgeons came out and said that the left artery (the extra one my liver had) had clotted and died off and the right one was inconclusive on the scan from there view; that they needed to call the head radiologist and get him to review higher resolution images and that they would let us know within the hour.

We made our way back to the room and sat, we cried, we went insane, we were lost.  We all at this point I feel lost most of our hope for the "best" outcome, as it seemed evident that a major turning point was about to happen.  As we waited, we consoled one another, we grieved in our own ways, and some of us made mends with loved ones...this was a really hard time; it was like minutes were hours.

We received a call from Dr. Kim (she is amazing by the way), she said that the radiologist was confident that there was still flow in the right artery; that we are not out of the woods just yet, we need to be cautious but was optimistic and they're going to watch Dylan very closely.  We were told that morning labs would be a good indicator if things are going bad, stabilizing, or getting better.  So we took a breather and decided it was good news that we just heard, and we would hold our thoughts until today.

We got Dylan's labs today and as much as we prayed and hoped for them to be better, they were not.  They had gotten a tad worse on some, a decent amount on others, and some unchanged, as well as a few better but the one's we needed better didn't get better.  We became very concerned but decided not to freak out until we saw Dylan's transplant surgeon, Dr. Esquivel.  Around 2:30pm today Dr. Esquivel came in and gave us a very concise run down of what was going on.  He told us that he is concerned for Dylan's situation but is optimistic.  Also that he is not willing to treat it with more drugs, the side effect(s) could make things worse.  He feels Dylan should be given the chance to do well on his own and allow his body to do what it needs to do and that tomorrow labs if they come down will be a good indication that things are back on track and in the right direction, if they rise again that he will have another conversation with us and start discussing rejection a bit more (as the 2nd week is the week you worry most about rejection).  Dylan's Prograf levels are on the higher range of the scale.  He is going to taper him back even more than the typical threshold for patients and hope that it makes an effect on this and his labs.

I must say, when this man speaks, I don't even know how to explain how it makes us feel, he has such an amazing way about himself.  Aside from the fact this man has saved my son's life and countless others; when in his presence you feel a sense of relief and that whatever he says one knows its the truth that is backed up by intelligence, integrity, experience, and mostly compassion.  This man is one that I will never be able to put into words properly of how I feel around him.  Honestly he may be God, as odd as that sounds, this man has the touch of an angel and one that only God could have purposely put on this earth.  He is a remarkable man.

Tomorrow is another big day for us, please continue to keep our son and family in your prayers, I know the tremendous amount of support and words being sent above are helping us through this most difficult time of our lives.

-Noah

22 Comments
GSTMike
2/14/2011 09:01:19 am

I am sure this worry it eating you up Noah, thanks for keeping us all in the loop with what must be extremely hard for you to put down from your thought's to these updates. Just know (and I know you already know) you have 100's if not 1,000's of people pulling for your family so keep your and Amber's chins up and let's all pray tomorrow is a better day than today!

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tabitha cornish
2/14/2011 09:08:37 am

I don't know your family personally but I have been not only following your story daily through your journal, but also talking to God a lot, begging him to grant the wish your family so desperatley deserves- Dylan's full recovery. Through my tears of this last journal entry, I pray even harder that little Dylan stays strong and embraces your liver as his own...please stay positive Amber and Noah.

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K. FRENCH
2/14/2011 10:52:07 am

We have not met in person but our children have a few things in common. Our daughter is a 1st grader at Olive School. She underwent a liver transplant 1 year ago, a living donor from her "Big Sis".
Our daughter wishes the best of recovery to Dylan and hopes to see him at school next year.

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Wael
2/14/2011 11:00:04 am

Noah, no matter how things look, God always takes care of us and will take care of you and your son. Keep the faith and believe that God will take care of all of you. I read your blog and pray for you all every day.

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Budski
2/14/2011 11:21:10 am

hang in there, you're family is in me and my wife's thoughts. If there is anything we could possibly do let me know

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Faith, Linda & Michael
2/14/2011 11:58:03 am

Noah,

We are so sorry you are going through this. We will continue to pray, and support ya'll in any way we can.

God Bless,
The Halls

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tetsu
2/14/2011 12:59:29 pm

My thoughts are with your family. Thank you for keeping us all posted.

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Noah Levy
2/14/2011 10:49:29 pm

Thank you everyone for taking the time to say something, we read every comment and email that comes through...

-Noah

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Graham Hambleton link
2/14/2011 11:28:51 pm

Noah, our family and friends have been pummeling me for updates on your family. You have alot of people praying for you guys. This has to be one of the most intense experiences I've ever heard. I hope its a slight reasurance during all of this how many people are rooting for your little man. Take care sir.

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Ed - Dallas, TX.
2/14/2011 11:42:51 pm

Hey Noah, Amber, and Dylan,

Again, I do not know any of you, but I came across your story through the Weebly website. Still, I am so touched by it, and my family has been praying for your family every night. We will continue to do so.

I understand that helpless feeling you have with Dylan, but not on the same level. My duaghter broke her arm pretty bad when she was three, and having to watch the drugs take effect in her and having the nurses wheel her away was one of the hardest moments in my life, and I have been to war. She was fine and it all turned out great.

I read your journal entries, like it is just a story. Sometimes I get lost in realizing you are going through this situation as I write this. I sincerely hope the journaling you guys are doing somehow is a bit therapeutic for you. I know it would be for me.

I tell my wife all of the time, live in the present. Enjoy the present. You never know how much of it you will have. Living in the past and the future does not always help or make the present better. I am so glad you two decided to live in the present with Dylan, and I'm sure it will only make him feel better too. You can only deal with each issue and each decision when it arrives.

I will continue to pray your family is soon free of these issues and these decisions and that Dylan will soon be on his way headed to a great recovery, and soon to school.

I truly believe in positive thinking, and it is wrapped in my faith. I will forever know they are connected. Live in the present with your son. Think positively. Your faith will guide you.

You guys are not alone, and I don't mean just family. I too, am waiting for the next results with you, and I will hope and pray they are good.

P.S. What a fantastic gesture on the part of the winner of the tool chest! Noah, there are angels all around!

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Ray
2/15/2011 03:40:52 am

Still praying for you guys. Kids are tougher than we can comprehend. I know he'll get through this

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Cassandra
2/15/2011 03:46:00 am

sending prayers and best wishes to your family!

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Snir Golan
2/15/2011 04:53:44 am

you are all in our prayers and we wish you all the best. Please know that you have many people praying for Dylan and that we are all with you in spirit.

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nicole
2/15/2011 06:10:14 am

My sister in law told me about your story, as she is friends with Nicole A. My son also had BA, and received his liver at 10 months old. He ended up with a clot in his hepatic artery, that was not found due to his liver numbers continuing to improve. I definitely understand what you are going thru. My son still has that liver with the clot. His body somehow came up with its own way to get blood to his liver. He is 4 1/2 now. We will eventually be looking at a retransplant someday, but he has been great so far. Stay stong, stay hopeful and positive, you will make it through this, and your son will continue to amaze you. My family will be keeping yours in our prayers.

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Margaret Pau;son & family
2/15/2011 09:35:50 am

Hi Amber..We are keeping up with all your updates thank you for keeping everyone in the loop..
I think about your family everyday and remember Dylan as the angel he is with those big brown eyes and curly hair.
I like the last update about the wonderful room your family has with Dylan and the shower..I feel very positive about everything going on with your family. I look forward to reading the next posting you are able to do as I know it will be even more positive than the last..:)

Forever in our thoughts, prayers and heart!!

Margaret Paulson and boys

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Virginia
2/15/2011 02:59:38 pm

Sending your family love and prayers..

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Megan link
2/15/2011 08:15:54 pm

praying for you and your family. I got chills reading this. I cannot wait to hear an update.
Thinking of you,
another family with BA.

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Monica
2/16/2011 12:51:22 am

Hi Noah,

My son (Noah) also has BA. I have been in contact with Amber. I know things will turn out great for Dylan. I'm not sure how or why I know, I just have a strong gut feeling. I have met Dr Esquivel as well and you describe him PERFECTLY! It's almost like nothing seems to chaotic, or crazy. He makes everything seem so adressable. The fact that you were released is great news. I will pray that numbers only improve for Dylan, and that by this summer he is out splashing around in the beach!

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Jonatan
2/16/2011 01:11:01 am

never give up!!!
wish the best to your family!

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Asa Scohy
2/16/2011 02:18:33 am

Hey Amber, Dylan, Noah

We obviously don't know each other but in many ways i feel connected to your life. In one way i had a cousin with Dylan's condition and saw first hand what your family is going through at this moment in time. With the support of positive thinking from family and friends there is nothing that can not be overcome, and i believe that Dylan will fight and beat this and be able to enjoy a normal fun and energetic childhood.

Also im a subie owner and here on the forums (iwsti,nasioc,buffalscooby) there and hundreds if not thousands of young men and women thinking of Dylan and you and your wife, all hoping and praying for the best possible outcome. And it shows how in a way Noah we are all part of a great and supportive subaru family that will be behind you 100%.

good luck and my wife and i pray for your family everyday. God Bless

Megan & Asa Scohy

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Blake
2/16/2011 09:22:51 am

My thoughts and prayers are with your family!

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Steve Parkinson link
2/17/2011 08:59:20 pm

My thoughts go out to you and your family. Never give up. Dream like you will live forever, live each day like it is the last.
(From Almeria Spain)

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