Dylan W Levy
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Transplant Day 8

2/16/2011

19 Comments

 
The day started with me arriving early to the hospital, as I didn't want to miss the Dr's doing there rounds, and more importantly what they had to say in regards to Dylan's labs.  I relieved Amber so she could get a mental break, she was able to take a much needed/wanted shower and head to the cafeteria for some food for us.  The emotional stress of the last few days had really taken a toll on us, literally from extreme highs to the lowest low's...and that doesn't really do it justice explaining it like that.  I often times make sure I don't dive too deep into our inner feelings, as I don't care to upset or make others feel badly.  I can say that this "experience" is one that has been beyond overwhelming and very mentally and obviously physically challenging.

The Doc's popped into the room and said, "Dylan are you ready to go home today?", he was like "yeaaaaaaah".  They agreed and told us his labs had come back down and stabilized enough to satisfy there criteria to continue this journey out of the hospital setting and if we were ready we can start to pack up.  Amber and I were so relieved and honestly scared at the same time.  It had only been 8 days and our transplant hospital stay had come to an end but this process was far from over.  Part of being able to check out of the hospital is showing the team that we as Dylan's parents are fully prepped to continue his care and medicine regime.  Amber was sent off to Redwood City (about a 15-20 min drive) to go fetch Dylan's many meds from Kaiser, did I say many?  I should reword that as a truck load of meds.  It is unreal what is needed to keep things going, literally its a full time job of keeping track of when, where, and what is due.  Amber finally made her way back to the hospital and showed the team all the proper meds and we were officially free to go.

As we headed down stairs and into the car, it was an amazing feeling...we had spent 5+ years in anticipation of these last week's events and it was coming to an end.  We rolled down our windows and took in the fresh air, turned on the stereo and "Train - Drops of Jupiter" was playing in my car, Dylan started to sing (for those who don't know, he has an amazing voice and a knack for hearing/learning songs) and I was succumbed to emotions.  I can't believe we had already come/gone through our hospital stay and our second phase of life was about to embark...

We made our way to our temporary living arrangements and it felt so good to just be together as a family again.  Things were very different but just being in each others arms, air space, and same central location really felt good.  Amazing how just a few short days ago we were hearing terms of "status 1A", "liver transplant #2", and here we were 48hrs later having dinner together...simply beautiful is what it was.  The night was finished off with attempting to head to bed early, as we had to be back at the hospital by 7:30am.  Dylan will have follow-up appointments and lab draws nearly daily for the next few months.

We headed to the hospital bright and early...ONLY to forget the standing order lab slip, ugh, what a pain.  Amber headed back to grab it and quickly rush back for Dylan's lab draw.  Eventually all worked out and Dylan had his needle stick for the day, which by the way he is not too happy about.  This whole process has really made him very angry, not trusting of others, and unsure of what people's intentions are.  Rightfully so, he has been through a lot thats for sure.  

We decided to make our way to Target and get some stuff for daily living and make our place a bit more comfortable and more like "home" feeling.  We quickly realized that our lives are going to be far from normal.  Dylan is just so agitated and uncomfortable, he also doesn't like that he has to wear a mask in public and have a bile bag (this is very similar to a colostomy bag and is worn on his hip, its attached to his biliary tree to visually see bile color/flow), this will be removed in a few weeks and the line will stay in for up to 3 months.  Dylan's meds are also very tedious and very often.  We are accustom to Dylan taking a lot of meds but we had our old routine down and this new one is just a bit different so we have a learning curve to overcome.  Furthermore, Dylan is not wanting to take his meds and it just breaks my heart that its yet another item that he has no control over and he MUST take on time every time.  We found ourselves in the parking lot, in the rain, with Dylan having a break down and Amber trying to tell him why he must take his meds at that moment and to stop fighting her about it.  For me it was just too much, I started to cry and just got really upset...I just want him better and I know this process is essential for him to do well in the future.

Dylan is currently taking about 20-25 doses of meds per day right now, the anti-rejection alone has very strict guidelines around it, which is no food/drink 1 hr before and no food/drink 1 hr after.  I know there is light at the end of the tunnel but it seems so far away.  In about a month's time he will have about 5 doses removed, in another 3 months time a few more.  In about 1 years time the goal is for only 2 meds.  2-3 years out the hope is he is only on the anti-rejection meds and ideally a very low dose.  The fine balance between our care for Dylan and how we give these meds and the medical teams ability to balance these drugs will determine Dylan's future.  It's such a long and tough road in front of us, all I can think of is the present but I dream of Dylan's future...it brings a lump to my throat each and every time.

Please keep Dylan in your thoughts, this road we have traveled down has just begun.

*We receive all your comments and contact (email) entries, please know we take each and every one of these to heart.  We will be responding to the hundreds of emails over the course of the next week or so.  We have not forgotten about any of you and you will hear from us real soon, we just needed a little time for things to settle down before we can respond to every individual person who has taken the time to send us an email.

-Noah

Slideshow:
***The images below are in a slideshow format, you can hit the "Play" button on main image or click on individual images to have them enlarge.  To get more images put your cursor over the last picture shown on the right, it will scroll to more images***

19 Comments
tabitha cornish
2/16/2011 09:10:51 am

For those who say there is no God....
Wow, I am overjoyed. I know this is a frightening time (admittedly, I have no idea how frightening)...but, please, remain Strong, Positive, Hopeful, and Trusting. It will be a very long journey, But....Dylan will recover. God Bless!

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Bryann
2/16/2011 10:22:05 am

That little cutie pie has THE most beautiful, long eyelashes I have ever seen! What an angel! :-)

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mike maddox
2/16/2011 11:18:20 am

Wow so glad he is doing better! I could not even begin to imagine what you and your wife and little dylan have gone through, stay strong and my son wants dylan to get better so he can play lego batman with him. you are all in my prayers.... mike (boxerfxt)

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Ray Tracy
2/16/2011 01:10:47 pm

This is such an amazing process. Reading this puts me in such a state of humility that I almost don't feel worthy to even be reading it.

This is such an amazing example of the strength of family, love and childhood.

The story about riding in the car and singing to music was beautiful. The things we can take advantage of every day but when looked at in the proper light are so awesome. I love riding around with my daughter in the car with me.

So here is to many many more songs...

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Tim S.
2/16/2011 01:17:38 pm

My family and friends are glad to hear Dylan is doing better. Noah and Amber,you are so strong and amazing as parents. Your family is in our thoughts
and prayers daily.

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Snir Golan
2/16/2011 01:51:14 pm

As a father of 2 young kids (3 and 1), i can honestly say that watching the pictures of Dylan in the hospital just broke my heart. however, reading your entry and seeing your scar also reminds me that as parents, it is our job to always be there for our children and that there is nothing that i wouldn't do for my kids. you both are amazing and Dylan is lucky to have you as parents. stay strong and no matter how hard it gets, know that you have many people (even ones like myself who never met you or Dylan) supporting you and praying for Dylan.

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Rita T.
2/16/2011 03:17:23 pm

I know how it feels to be a regular at the hospital. My fiancé has RSD, and has been in constant excruciating pain for the past 4 years since a bad surgery. We're hopeful and try to look forward to our lives together, even tho it's tough to think of all the pain and unknowns. I admire your family's strength and love and I hope that everyone finds a lesson in patience and perseverance in your story. Thinking good thoughts for you all in the East Bay...

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Carol jackson
2/16/2011 04:16:55 pm

Ray and I are praying for our buddy Dylan.. We hope you all can get some needed rest Our Church is praying for all of you also, Just know we love all of you and thanks for the wonderful journaling. Much love Carol Jackson

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tetsu
2/16/2011 07:48:08 pm

Wow, i'm relieved to hear that Dylan was well enough to leave the hospital, the last entry you wrote was a cliffhanger. Although things are still plenty stressful and overwhelming, it's so wonderful that you guys are on the road to recovery and headed in the right direction. Even more, i'm glad you now are able to be together as a family again. Sending you guys strength and positive vibes, take care.

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Declan
2/16/2011 10:40:54 pm

Hang in there, you've done the hard bit, it'll get easier every day.

On the plus side you've got a little boy who's got the strength to fight you on taking his meds!
Most parents can relate to that, sounds like things are on the up.

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Kathy (Andrew's co-worker)
2/17/2011 02:10:02 am

Love the color in Dylan's face and his smiles! :) Hang in there and hugs to all.

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Kerryann
2/17/2011 05:51:22 am

So good to hear he is out of the hospital. You and Amber are amazing parents/people to be able ot keep up with such strict guidelines for adminsitering meds! Keep up the fight brother! Im prayin for you guys every day!

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Wael
2/17/2011 08:41:37 am

Noah, you are a great man and I am just happy you guys are ok. Thank you very much for sharing all of this with us. You know you and your family are all loved by everyone. God bless you all and always keep you in the best health. Get well soon so you can work on my car dude.

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Noah Levy
2/17/2011 12:15:23 pm

Thank you so much everyone...we really love reading all your comments and it really does mean a lot to us.

All this stuff is so hard, I can say it feels like its getting better day by day but none the less, its very challenging on all levels and unfortunately this is a life long challenge we are engulfed in.

Amber and I feel so blessed to have Dylan as our child, we know he was given to us for a reason and that we will be tested in every manner possible but love of family and love of others will see us through these hard times.

Life isn't always fair, our story I think shows this, but in the end how we deal with it is what makes us who we are...which is proud parents to Dylan

-Noah

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Anonymous link
2/17/2011 09:17:11 pm

I came accross Dylan's Story as it was the "Site of the Day" on Weebly and curiosity told me "check this out". As I read, my heart was overcome. I had to stop several times to clear my eyes so I could continue reading. The only words I have are these....I will keep Dylan in my prayers. I truly in my heart feel God has a devine plan for him. I don't know any of you, Noah, Amber, and of course this precious little boy. But my heart goes out to you all. I gave all I all today and will continue to support as much as I can. I will be posting an ad as well to encourage others to aide Dylan in any way that they can. Please, Keep on Keepin' On !!!
In God's Love, a Friend

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Dawn Petersen
2/17/2011 11:44:15 pm

Thank you so much for sharing your story and the pictures! I have been following your story since the article was in the Press Democrat and have read all of the journal entries. I am so glad that your baby is out of the hospital! Seeing the pictures of him in the hospital bed just brought tears to my eyes and made my heart ache but seeing him with his daddy smiling...there are no words for it! What a beautiful child! Keep smiling Dylan! God Bless all of you!

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Puneet
2/17/2011 11:48:51 pm

You guys are amazing parents with a beautiful and amazing boy! I pray to God that he gets all fine super quick and never needs to see hospital again... Miracles happen! Keep smiling Dylan, God bless you little angel!

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LIzz link
2/18/2011 12:16:53 am

I just came across your website and I am so in awe of all that your family has gone through. You'll definitely be in my prayers!

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Nicole aka Raevynn
2/24/2011 09:37:55 am

its great to see you guys doing well and the smile on D's face is priceless!

Reply



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