Merry Christmas

Where is Waldo (The Janis Family version)???

Well we are finally home. What a trip we had. We have never had a no plans, where ever the wind blows us trip like this before. By the way we did have one plan, I could not let our anniversary get away without it being some where special (sorry a La Quinta Inn would not do in this situation). We set out for Corpus Christi and got as far as San Antonio before we headed to Lake Charles, LA to stay at L'Auberge Du Lac (http://www.ldlcasino.com/). We made a side stop along the way in Austin. It was great to see Lewis, Jenny, Paula, and Dr. Shen (Dr. Todd sorry we missed you and we will catch you next time). We also received a tour of Dell Children's Hospital (no fears of Becky moving there anytime soon).

Lake Charles was fun, except I had no luck in the casino. Becky had the best luck of all and she did not even need to gamble she found $4 laying on the floor (yes I made her treat me to lunch with that one). We then headed to Galveston down the scenic route along the ocean. It was during this time that we discovered that gas is cheapest in Beaumont ($2.66) and that refineries are big and chaotic looking (no wonder gas costs so much, it takes forever to get from one end of the refinery to the other). We took a ferry from the Point Bolivar peninsula to Galveston and enjoyed the scenic boat tour. Contrary to popular belief I did not try feeding Becky to the sea gulls . . . . she did that herself!


Merry Christmas from the Janis family!

A Message of Thanks

After a week of reflecting and mourning I wanted to address our sincere thanks to everyone from the messages of support to those who have dropped by with food and other basic necessities. I would also like to thank members of the Komets and Grave Diggers hockey teams for your support in getting us out of the house and bringing us an alternative world away from the one we live in. Though we are just a bunch of "beer league hockey players" sometimes life in our NHL makes us feel like we are living out dreams (and yes the rumor is true we are trying to get Becky to play hockey next season with the Komets - stay tune for future posting of if and when this may occur). I would like to thank the staff at Children's Medical Center for the care package you gave us last week. We have already started to put it to good use as a memorial to Johnathon. To the caregivers of Johnathon thanks again for everything you have done. You will always be a part of family for the memories you have given us. To my co-workers at UDR thanks for the support and for giving us a reason to get away for the day. Thanks to Calvary Baptist Church for your support of us during this time. You truly symbolize God's healing hand in our community and in our life. Thanks to our friends and family members for helping us remember Johnathon so well and for being there for us. Finally thanks to all of the commenter's to our blog. In these difficult days your comments have helped us stayed strong on our darkest days.

Thank you.

I have received many message regarding where will this blog go from here. As I have said this will always act as a means to keeping up with my family and where we are at in our lives. Whether that be our next great cruising adventure, Becky graduating from UTA, or where I will be going with my education (all future topics to come). We have gained so many new friends over the last 3 months that this has become the best way to communicate. Though Johnathon was the primary conversation on this blog, his memory will continue to live on. I have been working on downloading the full version of this blog into a notebook. Many people have asked that I consider publishing this in a book to help others who may experience our experiences. I agree this would be the greatest way for Johnathon's memory to continue on, until then if you know someone that may benefit from reading our blog please pass it on. We are all the keepers of the memories of those who pass before us.

My final thanks (and biggest) goes to Johnathon. For all of the experiences you gave Daddy, you gave me a reflection on my life that was well needed. You have definitely allowed me to view my life in a different light and reminded me that many times in life we let the day pass us by with not taking notice (and appreciation) of everything around us. Thanks again for making me a better man.

Funeral Arrangements

The funeral service will be held Saturday 12/8 at 11:30 am at Calvary Baptist Church in Euless (304 Calvary Dr. 817-283-0241). The internment will follow at Moore Memorial Gardens Cemetery in Arlington.

In lieu of flowers offerings may be made to Calvary Baptist Church in memorial of Johnathon Hampton Janis (304 Calvary Dr. Euless, TX 76040, www.calvaryeuless.com) or to Children's Medical Center of Dallas (www.childrens.com).

If flowers are sent they need to be sent to the church on Saturday morning prior to 11:00 am.

Services attire will be casual.

Farewell Little Prince

JOHNATHON HAMPTON JANIS

November 11, 2007 8:01am - December 6, 2007 3:45pm

Beloved Son

Loved by All

We Will Miss You

(Funeral arrangements are pending and announcement of date, time, and place will appear here tomorrow by 2pm. Funeral will be open to all to attend)

A Time to Say Goodbye

With another unsuccessful trial off today, we have found that all means have been exhausted to overcome the deficiencies in Johnathon's anatomy. Our decision has been sent forward and agreed upon by Dr. Miles.

We are enjoying our remaining time with him as well as we can. Even as I type this sitting here listening to the rhythmic popping of his high frequency ventilator, memories of our good times dance in my head. I will never forget the first time he looked at me, the first time Becky saw him, his first attempt to cry, or his little smile he tried to force. He has brought many new and wonderful people into our life that we have built friendships with. Tonight I did venture into having an experience with him that only a Dad can have with his son by watching the Victoria Secret Fashion Show on TV with him. Though he was never really awake for it, it made me feel good to sit there holding his hand and trying to teach him about girls. As tough as his life has been, he has been a rock for me. His determination to try and overcome things has been well viewed by not only the staff here, but by many via the internet.

We are inviting you the opportunity to come spend time with him and with us. On Wed 12/5 from 3 pm - 6 pm and from 8 pm - 10 pm, we are inviting you to come visit. If you would like to come and see us please go to the 12th floor ICU family waiting room and have the receptionist call us. Remember this is not a solemn time. This is a time of joy as many parents do not get the time with their child as many have passed shortly after or during birth. For every one of Johnathon's 23 days (as of today) we have enjoyed him.

Our current plans call for a special time with our immediate families on Thursday and a private blessing to be performed by Erin (our Pastoral Care Chaplin at Children's and a new friend we have made). Becky will then be able to enjoy some time holding Johnathon for the first time, before the ecmo circuit is shutoff. Tomorrow I will post plans for his funeral as soon as they are arranged. Both Becky and I appreciate the support that we have received during this time.

We do know that several blood drives have been setup for Johnathon and we have asked that these still be performed as a memorial to him. The credits will be necessary to help re-stock the blood system here at Children's that Johnathon has come to rely on.

Trial Off

After much work overnight the trial off took place at 11:15 am today.  It lasted for 30 minutes before ecmo was turned back on.  An echocardiogram was performed during the entire procedure to get a good view of what is occuring in the heart when it is not influenced by ecmo.  The results were not encouraging.

For some time it has been known that we had a pulmonary hypertension issue (we had thought our corrective surgery may have resolved this) it has not gone away.  Today we discovered that the arteries on the left side of the heart are underdeveloped which is creating our low blood pressure.  When Johnathon's heart pumps his pressure is higher on the right side causing a significant gradient concern on the heart overall. 

At this point no surgical procedure can help him.  A last effort of therapy using the drug Flolan is underway and calls are being made to various other physicians to discuss any other treatments.  Since we are at a key point of determining how to proceed, Dr. Miles wants to meet with us to have "the talk".

Back when we received our diagnosis of a diaphragmatic hernia, Becky and I discussed how far we were willing to go.  We had said if Johnathon was in pain, severe discomfort, neurologically damaged, or severe quality of life threatened we would not allow anything to pursue further.  We are reaching this point.  With various parts of Johnathon's body shutting down and no plaussible treatment plan left, we are near our decision.

The hardest part is looking into his eyes and seeing that he is neurologically intact.  He is still our little baby boy.  Today his eyes showed the strain of being tired.  He is fighting a hard fight (its been ongoing for 22 days) and their is no telling what will happen when he is finally taken off ecmo.  We only hope that if he passes that it is painless.  Though we do not want this to occur, it is in God's hands now to make the final determination of what will occur with Johnathon.

We will meet with the Doctor in the morning and discuss where we will go from here.  I will post the plans here tomorrow night.

What a SLOW Process

We started to come down on ecmo for some trial sessions at low levels.  As of 9pm we were at 68% (down from 90% earlier in the day).  The goal is to reach 35% and sit there for an hour or two.  If no problems occur we then go back to 55% and hold till 10am Monday morning.

The reason for this is to make sure our blood pressure stays in a good range.  We will be having Cardiology with us tomorrow to monitor and offer any ideas or suggestions before we trial the actual clamp off.  The concern is that Johnathon's PDA (the hole in the heart that all babies have) may not have closed yet and is causing some of his blood pressure issues.  If this is the case it can be easily fixed with a cardiac catheter.

Looks like tomorrow will be a busy day.  I hope it goes faster than today.  If not I will have to say I have finally found watching paint dry to be a more enthrilling process.

Back to The Grind

I took the night off last night.  I was hoping todays update would say we were off ecmo.  However the opposite is true.  Our right lung collapsed again (darn mucus plugs, time to get some Mucinex).  We were able to re-inflate it.  Not sure who did it, but there was a clown sighting this morning from the annual Children's Parade that the hospital hosts over in Dallas (we may need to ask Erin if she knows anything about that).  I hope they used the ventilator to re-inflate and not the clowns bicycle horn.

Even though this put a damper on things, it gave us a chance to sneak off and see our beloved dog Haven.  She sends a spastic tail wag hello to everyone.  She was so happy to see us and spend some time with us.  Except the pitiful look we received upon leaving made parting quite hard.  We do plan to bring her home next weekend.

As for master Johnathon, his big day is now Sunday.  They hope to run the trial off ecmo some time around noon.  Becky and I are wanting luck so we are bringing whole rabbits not just the foot.  If everything goes well we will have a silent party in his room tomorrow night (we are having Frankie Quiet and the Four Wispers perform).  In all seriousness it will be a long one hour if everything goes well.  Thank you for all of your prayers and support.

Special thanks to Pastor Eddie and the congregation at Calvary Baptist Church for arranging the blood drive.  Both Becky and I were very excited by the turnout of everyone for the blood drive.  It gave us the equivalent of a long nap when we saw everyone there.  We left feeling quite vibrant toward the day ahead of us.  Special thanks to everyone who has been able to give.