NFR- Friend in need of Christmas cheer (long)

My friend and fishing partner- known here as JNT is facing the most difficult time of his life and could use some good will.

His daughter, Erin was born with a liver disfunction called Billiary Atresia. Her liver never developed the duct work to deliver bile to her intestinal tract. At three months old she under went a corrective surgery- a Casai (sp? pronounced "cassigh") proceedure. If I remember correctly, the doctors took blood vessles and used them to make ducts for bile delivery. The problem though is that it is only a temporary fix until the child is elegible for a liver transplant. Over the course of two years there have been many complications and extensive hospital stays, some too rough to describe.

Erin is almost three and has been listed on the transplant list for just under a year now. The doctors said a year ago some time between now and Christmas.

Well... Friday night at 9:00pm they are watching movies, laughing, just enjoying family time and the phone rings... "This is Childrens Hospital, we have an organ for your daughter, we need you here in the next hour."

Erin under went liver transplant surgery at 6:00am Saturday morning. The doctors were very optimistic given Erin's condition and the condition of the liver. I reassured Jon- a liver transplant is a cure. She would have a completely normal life if this works have hope. Eight hours later, the doctors felt everything had gone well. However, two hours later an ultrasound exam showed that bloodflow to the liver was blocked by a blood clot. The hospital recalled the team of surgeons and they reopened her to try and clear the blockage. We all were crushed. Four hours later, 12:30am the team had hope again, they had found the clot and put her back together. The liver appeared healthy so it is a wait and see.

I stayed the night at the hospital. Jon called me at 5:30am, nearly histerical... she was hemorraging profusely. It was coming out as fast as they were putting it in. She went back for the third time. It seems she was swollen from the trauma and the stomach wall was putting too much pressure on her liver for proper blood flow. The solution was to leave the incision open, temporarily closing it with an adhesive patch to allow the cavity to expand and relieve pressure in her abdomen. It was questioned though whether the liver had been damaged from the loss of blood flow or from the additional handling.

Hope. Pray. Stay positive when it seems the worst.

That was Sunday morning. The doctors felt that if they can stabilize her and buy some time the liver might get going. I had to leave Sunday evening to prepare for work Monday, but since then I have received word that her condition has improved. So here we are, twenty four hours later, the family is still standing by. The fact that she has been stabilized for this long is enough to be excited about.

Jon is as loyal of a follower of this board as I am. ( maybe he is more of a lurker?)

:p

But we follow the disputes, the humor, the adventures, the politics and share the fellowship that comes with this electronic community. He might have access to the board during this hospital stay. I tried twice on Sunday to place this post but the page wouldn't load. I suspected a security feature the hospital has placed on their network? If it is available now or not, Jon and his family need all of the positive words and energy available. Not being a formally spiritual soul myself, if anyone has a prayer I will be the first to bow my head and close my hands.

Thank you

JTD:

My heart goes out to you, and the family. It sounds like this is a tough little girl, and she is fighting for her life.

I understand. My mom has been in Critical Care now for over a week, had heart surgery on Friday, and is still in CCU. She is, thank God, off the life-support machines, now.

Our thoughts and prayers will be with Erin, JNT, you and her family.


Mike B

Lord, I know I have asked for a lot in the last week.....but please, take some time for this little girl and make her healthy again? She has a long life ahead, and needs your help.

My prayers are with her and her family.

JTN, stay strong, as a parent of a medically intensive 4 year old myself, who has spent considerable time at Children's, I know your daughter is getting the very best care possible, my wife and I will say a prayer for your daughter and your family.

Our thoughts and prayers go out for Erin, her family and you also JTD.

Mike, so good to hear your mom is doing better. We will continue to remember her and your father in our prayers as well.

I hear you Mike, it's seems so hard to ask for more when you realize how much you've already given, but the truth is we just can't ask for more than God wants to give us. I suppose that's what Christmas was all about and why I must continue to ask Him each day for the grace to accept and trust Him more.

God bless one and all.

Jnt. I too am on the transplant list. With all the info I have garnerd, I was told that young children have the best chance at haveing a liver transplant. I pray with the help of God that everything truns out for the better.Jim Marquis

Peace and Love to ALL that have hardship this time of year especially!


I'll cry a little for this young girl, and hope she gets better!

Dan

Thank you all for the good wishes. She is still stabilized but the doctors are concerned that she is not progressing as quickly as they had hoped. All we can do is wait. Hopefully this liver will kick in double time.

Duck in the Fog- I think you and Jon may have exchanged posts in the past regarding your transplant. He specifically requested that I post this info partially for your benefit. He is still very optimistic and is confident that this was the best solution to Erin's condition. Good luck yourself-

I'll keep everyone "posted"

Thank you everybody for the positive thoughts and prayers. It is now Tuesday evening (5:40 pm) and she has just completed a plasma exchange procedure that helps remove liquids from the blood to help with swelling. She will be reconnected to kidney dialysis to help with the same. She is in better shape now than earlier. When fluid builds up it puts pressure on her heart. She has fluid in her lungs and her right upper lobe of her lung has collapsed. They will be able to fix that non-invasively. I just want people to know that we really appreciate the prayer and good thoughts. I know we will be home soon. Maybe Christmas will come in January/February.

Every one that takes the time to read this post and has children themselves needs to spend a little extra time with their kids tonight....hug them tighter and maybe read them a bed time story....possibly, about the slab that got away and your buddies won't believe.

I wish everybody a great Christmas

Best regards,
Jon Tornquist

The wife and I will both say a prayer for all of you.If you dont mind we would also like to include your daughter on a prayer list at church.Its so fortunate that children are so resilient.We pray that she will be a bouncy bubbly little girl before you know it.
Wishing you all the very best.
Rick and Sue

jnt....prayers to you and yours

Peace

Please Please Please .....Add Erin Tornquist's name to any prayer list and keep her in positive thought.

Thanks,
Jon

The little children are the true treasures on this earth.

Any updates on how Erin is doing today.Hope and pray its positive.

Well Johnny- you gave that old hospital computer a kick start? It is nice to hear from you. I didn't get an update last night, but it sounds positive. Call me today if you can get away.

Did your brother tell you we are planning a dinner for all- I call it Chinese-take-out-Christmas-Eve-Extravaganza (I call it that even if I spell it wrong, sort of artistic license) but I need a head count as to who will be there. Any particular menu choices?

Does anyone know of a good Chinese take-out joint close to Childrens Hospital?

Take care of yourself, we are thinking about you, post up and hug Jess for me!

Jody

and a Santa back to you!

Of course!

Black Pearl. On the corner of 35th and 75th NE

526-5115

They will easily deliver to CHMC.

Or, even better, try giving Snappy Dragon a call at 528-5575.

They are at 8917 Roosevelt, and might be too far to deliver to CHMC, but you can always call and ask.

Although Snappy Dragon is an off-shoot of the original Panda's...which split in to 3 restaurant (Pandasia, Black Pearl, and Snappy Dragon), Snappy Dragon is the best of the 3.

JNT - Prayers, thoughts and best wishes from my family to yours.

It's great news that her condition is inproving. It will be the gift you've been hopeing for. A major hurdle has been crossed and we're still praying for a great recovery. Jim

My best wishes go out to you and your family and I have the best of hopes for your daughter and your family, god bless jfk

Best wishes for a speedy recovery from Fishgal and myself! And a Merry Christmas as well. Hopefully, the liver will provide her with a Christmas present that will last for many decades to come!!

When I first read this post my heart broke. As you can see from the picture to the left I am a father of a little girl. I cannot imagine what I would do in your situation. My thoughts are with you and your family during this time. I hope and pray that she continues to improve. This thread reminded me of what is truely important during this season.

Steve

I have logged in as Jon- JTD

Update for all.

We received some upsetting news today. I left work at noon to rush to the hospital where I am now. Erin is having heart problems caused by poor blood flow through the new liver. Her heart actually stopped today and there was a probability that heart failure was soon to follow. They attempted to install a heart bypass device that would regulate her heart beat in that event. Erin consequentally had a minor heart attack during the proceedure and the doctors removed the equipment. The doctor's then decided this afternoon that best course of action was immediate removal of the transplanted liver, installing a temporary bypass to buy some time (48hrs max.) and try and locate a second liver donor.

Here we are at 9:00pm and word has just come that a second liver has been located- another miracle on a roller coaster of a week! This liver is the correct blood type, coincedentally the same gender and age. We are awaiting final testing for possible disease and confirmation of harvest. The surgeon has left by helo for the proceedure.

The family is on pins and needles pending the scheduled 4:00am surgery.

I realize that this board has been made available for fishing topics, but as I have already opened the door for this community, therefore I have been compelled to follow through. Erin's chances have been compromised, more so by each invasive proceedure. In the event that Erin's surgery is unsuccessful, I am unsure whether it is appropriate to continue to post or not. I considered posting a poll but decided against. Feel free to PM me (JTD) if there are any strong feelings. (Bob?) either way is fine to me, feedback would be appreciated. the posts have been therepudic actually.

Parker- the dinner has been postponed for now, but it is no surprise that you have the answer again. You are definately an asset to this board. Thank you.

Thank you all for the thoughts, time and prayers.

Jody

We'll keep our fingers crossed and say some prayers tonight for the next round of surgery.

Yes, it is a fishing board. But many of us are friends, both on and off the board and it's somewhat like a big family of sorts. (YIKES )

I welcome such threads, please keep us informed!

It is with a heavy heart to update the board today. My little girl Erin Jane has passed away. She left us early the morning of the 23rd. I wish I had a picture to post for all to see but, let me tell you she was my personal trophy. It is quite unfair a two year old has to be the one chosen to go. Please keep my family in your thoughts this Christmas and in particular my wife Jessica and Erin's sister and best friend, my six year old daughter Lauren.

God Bless you all this Christmas.

Erin's service will be held next week at Haven Of Rest in Gig Harbor, WA

If anyone is compelled to come, we welcome all with open arms.

Tight lines and keep your tip up.

JNT
Jon Nicholas Tornquist

Jon ... KK I belive speaks for many of us. We are deeply saddened to hear the news and will keep you and your family in our thoughts for many days to come.

Dammit !!!!!!!! Why does life have to be so unfair. I lost a son at 18months old, so I can fill the pain. So sorry for this to happen. Jim

There isn't anyway that I can say that I know how you feel. All I can say is that I feel devastated by your loss, but I also know that everything that happens in life can be used for growth and makes us stronger, you guys will be so much stronger than I. I will pray for a healing and a peace that passeth all understanding for you, your wife and precious daughter.

Our deepest sympathy to you and your family.You all will be in our thoughts and prayers.

Thank you all for your support and kind words. Erin's obit is in the Tacoma News Tribune today and is viewable at http://www.tribnet.com Her service is Thurs afternoon. Thanks again.

The Tornquist's

Jon,

I'm typing this through tears. I can't begin to tell you how I sorry I am for your loss. I simply can't imagine the burden that has been placed upon you.

My son was at Children's this past summer for open heart surgery. So far, everything has turned out well for us. It broke my heart to see so many children struggling to get better there, just like it broke my heart to hear your precious little girl isn't there with you now. I am so sorry.

If you need anything at all, post it here or email me or whatever. I'd do anything to bring her back to you, but since I can't, I can only offer my deepest sympathy and ask you to let me know if there's anything I can do for you or your family.

We'll miss you Erin. You're an angel now.

JNT:

Sorry I missed this before. I can tell you that in most ways I can understand your pain right now, as we lost my mom just 2 days ago, on the 26th.

Know that your little girl is in a better place than this world can offer, and what ailed her here does not exist there.

My condolences to you, your wife and family.

Mike B

Jon,

I didn't see this until today, I am also typing through tears as I read this. You have my deepest sympathy. I'll pray for you and your family.

Mark

JNT,

I'm very sorry to hear about your loss. I can't imagine how you must feel. Losing someone so precious is nearly inconceivable!

As it turns out I was at Overlake about the same time as my daughter was having her daughter on the 22nd.

If there is anything I can do for you and your family please let me know!

Take care and god bless!