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.

Step Back

Our efforts to move down on the ecmo flows and to wing off epinephrine failed early this morning.  Not sure if it was a response of moving too fast or a delayed reaction to the pump switch out. 

Dr. Myles is taking a step back and is working on weaning off epinephrine first, then stabilizing, and then decreasing ecmo.  So far everything seems to be working.  The new timetable is to be off ecmo this weekend.

We had a very good night tonight with Johnathon.  He was able to keep his eyes open the entire second half of the Cowboys game.  I guess the big matchup verse Green Bay was enough to excite him.  Don't worry I told him that if he thinks football is fun wait until he sees hockey.

Special thanks to Mike for the wonderful email he sent regarding the impact Johnathon has had on him and some of my teammates.  To answer your question Mike, yes you can buy him his first beer when he turns 21. 

Special thanks to everyone who helped allow Becky to take part of the day off from being at the hospital.  She needed and enjoyed the rest.  Special thanks to Allison for helping out and driving Becky home so late the other night.  Special thanks to Ruthie for finding us a new lullaby CD to play for Johnathon.  Now the nurses have some new songs to fall asleep to.

Not Much to Report

Our test did come back positive for the normal variant of staph.  We have been able to rotate him a couple of times to stop the chance of bed sores.  His oxygen saturation has improved a little to allow the ecmo to be brought down from 95% to 80%.  Other than that no real change.

On a side note Johnathon has already given me grey hairs.  I cannot believe how many have popped up.  At this pace I should look like Steve Martin by the time we try to give him a sister.  The worst part of all is at the same time he is changing Becky's hair dark (well away from her natural blonde).  I better call our hair stylist Chris and have him get some dye going.

On a side note if you happen to see our dog Haven at Dorothy's house, tell her "argh argh arrrrrgghhhh".  We miss you puppy dog.  We hope to be by soon to watch you sleep (I'm sorry but she is not really known for her spunk, unless you show her the leash).

Goodbye Ecy II

It was destined to happen.  Ecy II is no more.  Sent to the recommision scrap pile to be rebuilt.  Welcome Ecy III.  With the ecmo circuit building a 14 inch long clot that took up 50% of the line, it was time to go.  The change went smoothly.  So well in fact that we did not do a 90 second change.  We did a 4 minute 30 second change.  This was because the clot needed to be scraped from the line and Johnathon was tolerating the absence of life support well. 

The new ecmo machine is needed to help with the sepsis which we are still dealing with.  A preliminary result is showing a staph infection is what could be causing the lung infection (we hope a final result will be out tomorrow).  If it is staph we are already on the antibiotic to fight it. 

Not much to report in change to Johnathon's overall condition. He is still quite swollen and his pulse and blood pressure has still remained an item of concern.  No approvement on his kidney issue either.

Thanks to Darla, Donna, Don, Amy, Emily, Sara, Tammy, and everyone else for helping to make the ecmo circuit change go quite well.  We were able to be present and watch the change.  It made me feel like giving them high fives for their good work.

Major Setbacks

Today was no easy day.  When Becky and I made a decision to carry forward with Johnathon back in August, we knew there would be days like today.  However ready we thought we were, we discovered you are never quite prepared when the day is upon you.

Today we learned that the cultures from Johnathon's bronchoscopy came back positive for an infection. What kind of "bug" is it, we do not know.  We are awaiting the test results to determine what we are up against and what kind of antibiotics can fight it.  This "bug" combined with the other medicatons he is on are fueling his fast heart rate and low blood pressure.  Because ecmo can mask the systems of one being sick until they are at there sickest, we are just now seeing the effects. 

Johnathon will remain on ecmo (he is currently at 80% usage to battle the effects of the "bug") and he is receiving a broad spectrum antibiotic (until the correct poison pill for the "bug" can be identified).  Another problem the bug has created is shutting down Johnathon's kidneys.  Doctors have classified him as septic because of this behavior.  Fortunately ecmo does allow us to continue dialysis while we are still on it (swelling from fluid retention has already begun).  The infection is the main problem, so the kidneys will have to wait at this time period.

On a good note he had his first bowel movement since the surgery.  How often do you see parents celebrate a poopie diaper?  Well we did.  I hope there are many more to come (yes I do plan on changing them, its not my fault that all of the ones I have changed so far on him have been clean).

Setbacks

Not been a good day.  We are battling a deflated lung that is only halfway inflated.  Johnathon's blood pressure is low and he has a lovely tomato color.  They believe both are problems from the flolan medication that he is receiving for his hypertension.

They are reducing his flolan and some other pain medication to get his blood pressure up.  They did a bronchoscopy to find the cause of his lung issue.  Dr. Copenhaver found 3-4 mucus plugs that were blocking the upper lobe and removed them.  On our recent x-ray the upper lobe was finally starting to show some oxygen was starting to infiltrate it.  A respiratory therapist has been working with him to contine to move the mucus and open the lung.

Once the lung opens up we will start to come off ecmo.  Until then we are waiting.  It is quite frustrating at this point as the longer we are on ecmo the tougher things get. The risk for bleeding is still so high I am afraid to even think about it.  Please pray that we will be able to get off of ecmo in the morning.

Day After Surgery

Bleeding looks to be under control.  They will continue to monitor.  The breathing tube has quite a large leak and is not keepig the lung inflated adequately.  They are going to remove the old one and put in a larger one to solve the situation.  Johnathon had a good quiet night last night and we hope that this continues.

I am trying to get Becky to get away for a little bit today to get some rest.  Hopefully this will be able to occur soon.

Special thanks to Julie and her family for providing us Thanksgiving dinner.  I am still stuffed from all we ate.  It turned out to be a really good meal with family and friends.  Thanks again Julie for making this happen.  Also special thanks to everyone on the 9th floor for providing a room to hold our meal in and for the food you shared.  By the way if you want some great pumpkin muffins see Rachel.  I could eat those all day. Thanks Rachel.

Special thanks to the Evans and Pearl family for spending the day donating blood.  They made it a family affair.  From my family to yours thank you very much.

Johnathon is still needing blood.  Since surgery we have used roughly 12 units.  I have been informed that several blood drives have been arranged.  As soon as I get the complete schedule I will post time, place, and date for those of you who still want to give.

Thanks again for all of the wishes of support.

Update

We are having some bleeding issues.  The doctor has prescribed factor seven (pretty cool name for a drug) a drug to conteract the heparin from ecmo.  Dr. Hicks is monitoring the volume before going any further.  More updates will follow. . .

Surgery Done

Just finished up and met with Dr. Hicks.  He said it was tougher than expected, as the hole in the diaphragm was larger than expected.  This meant that he had little tissue to work with in attaching the patch to repair the hole (a problem could develop here long term wise as he grows).

Everything has been put in its place, except for the heart.  Because of the placement of the aorta he only moved it slightly, letting the body do the rest as it shifts over (not an item to be concerned on).  He did find development of a left lung a 1/3 of the normal size.  The lung does have upper and lower lobe development.  It's functionalty will not be known for some time.

The risks right now are bleeding, infection, and pulmonary hypertension.  Contact is now being limited to only Becky and I as they will leave his abdomen open so that it can stretch to fit everything inside of it.  They have a patch over it to help with drainage.  We hope to see him soon and will report back as soon as we can.

Surgery Started

We are an hour in.  We are hanging out in the waiting room.

Love Mommy

The moment I found out I was pregnant I knew I would love you no matter what. When we found out about the special way you would come into the world I knew I would love you even more. Now that you are here I can't explain how I feel when I see your little toes move around and when you wrap your little hand around my fingers. I love you even more then I could ever imagine. It breaks my heart that I can not pick you up and hold you close and make you better. I wish I could take all your pain away. Each tear I cry is for you and praying that you get better soon. I know that you have special Angels watching over you and that they will be with you tomorrow during your surgery holding your hand all the way, like they are doing now. You are a strong little boy with a strong will to fight for life. Each time you open your dark blue eyes and look into your daddy's and mine eyes we see how much you love us and you see how much we love you. I thank God for you and for Stephen. Your Dad is a wonderful man and you are much like him. I love him with all my heart, just like I love you. Be strong for Mommy and Daddy tomorrow and remember not matter what happens you will always be our little boy.

Love,
Mommy

Surgery Update

We are scheduled for surgery at 9:30 am tomorrow Friday 11/23.  Unless something major happens tonight or the surgeons see a reason for a change Friday is a firm day.  The time can change if any emergency cases come up.  

A Few Pictures of Things I Give Thanks for This Year

I found these pic's in my camera and thought I would share them with you as they represent some of the people and events that I am thankful for.

Happy Thanksgiving,
The Janis Family

Surgery Update

Our schedule has changed so that we can keep slowly moving off ecmo.  We are shooting for 30% and are at 45% now.  Since he is tolerating the decrease so well they are wanting to move slowly to curtail any issues.  Surgery is now being planned for Friday - Sunday.  A new update will come tomorrow.

Surgery and Blood Update

We are pushing forward with surgery for this Thursday. I am trying to meet with the surgical team in the morning to confirm all of the plans. Ecmo has been slowed to about 65% and nitric oxide is being used again to switch from the high frequency oscillator (a kind of ventilator) to a more traditional ventilator for surgery. Switch over in ventilators shall occur tomorrow.

Several questions have been posted regarding blood and how much is used. On a daily basis we go through 4.5 units of blood or blood products (plasma, platelets, and whole blood). As of the day of surgery (Thursday) we will have used roughly 50 units of blood. Not sure how much blood will be used in surgery or how much will be used afterward (as ecmo will continue for a period after surgery), but it is a consistent need. To put this into perspective consider your donation of whole blood as 1 unit. As of today 29 units of blood have been donated to Johnathon's cause. This is well short of where he will be by Thursday morning. Please continue to contribute as it is your blood that is helping to carry the oxygen across his body.

Becky and I have had some deep discussions over the past few days regarding Johnathon and his hospitalization. We have still a long road ahead as surgery may correct his inside; it will take healing, time, and prayers to help his body function correctly. We love Johnathon very much, but we have always agreed that we will have to keep his long term outlook in perspective when dealing with his health care options. We do not wish a life of suffering upon him and we have some peace that if his life were to end it maybe God saving us from witnessing this.

Thursday we will be holding Thanksgiving at the hospital from 4pm - 8pm. Please feel free to come by and spend some time with Becky and I. Our family has expanded over these last few weeks as too has our friends. No matter what the outcome of surgery may be, we still have much to be thankful for.

Thanks to Laura Miller's co-workers for your blood donations this week. Thanks to Rob and Donna for making the change out of the ecmo pump successful. Thanks to Sunni for helping me out during the change out time period. Thanks to Emily, you brought relief to me when you came to get Johnathon at Parkland and you have taken such great care of him for 6 out of his first 8 days of life. And finally a special thanks to everyone who has offered prayers, help, and a kind ear. As many people will be traveling for Thanksgiving and may not have a chance to read over the next few days, I wish you all a very Happy Thanksgiving.

Ecy II

I have named it Ecy II. Ecy I served us well but was not up to the challenge to last any longer. After the ecmo unit could no longer adaquately manage the various elements of the blood gases and its pressures ran too high we had to bid it adieu.

But now we start fresh. We pray that this does not set us back by very much, but at least we have a new partner that can last longer. We wait and see.

Ecy I for I knew her well,
Many nights I lay and stare.
Even though she fell,
It was a task we had to bare.

A poet I am not. Maybe next time I will try a haiku, that way if I made sense or not you still would not understand me (except for my brother he lives in the odd so he speaks it quite well).

Decision

The decision has been made by Dr. Scheren to go as long as we can with the ecmo circuit and get to surgery.  However a difference of opinion has gathered as some think we may need to change the circuit before we can get to surgery.

My personal opinion is that as much as I have learned sometimes I feel I know too much.  Some people are extremely cautious and some are more adventurous.  I teeter toward the later on some things but go conservative when I see odds are not in my favor.  Doctor's work in a different realm of the world playing percentages, practical theories, and hunches.

There is never a set plan or course of treatment in the ICU.  It is day by day hour by hour.  As I type this I am being informed again that a change maybe occurring shortly with our ecmo circuit.  Which side wins has yet to be determined, but one thing is for sure Johnathon is the only winner or loser in this fight.

Special thanks to the members of Calvary Baptist Church and Pastor Eddie for making us feel at home and for being our spiritual leaders.  Also thank you all for your effort in hosting a blood drive for our neighborhood in Johnathon's honor.

The Circuit

In ecmo speak it is known as the circuit.  To you and me its everything (filter, oxygenator, tubes, pump, and the kitchen sink).  When this starts to fail it can go fast.  With the amount of clots ours is showing and the other concerns with its performance a decision is being considered to change it all out to the backup circuit (turning everything off and starting with a new one).

The change out is a 90 second session of controled chaos as one system is primed and readied as another is turned off.  If you ever have the chance to see this occur you would gain great apprecation for the ecmo techs who do this.

For the parents and all others waiting on the change out it is 90 seconds of terror filled with what if's and hopefully's.  As we prepare to make the wait for this to begin our nerves go crazy for the anticipation.

Johnathon may soon have this procedue performed and we hope to report that all went well and that no what if's have occurred.  On a positive note his new pain medicine showed some positive signs and he slept well through the night.  Currently his stats are in a very good range so it is better that a ecmo circuit change out occurs now than if his numbers were down. 

To the ecmo techs I pray that your hands are swift and that everything goes well.  I know this critical moment is one that you step up your performance for and I appreciate that.

We are waiting on the Doctor's to make their final assessment of the situation and to let us know when the change out will occur.   I will keep you updated as soon as I know more.

Over-stimulization

Tonight we stimulated Johnathon too much.  As like any baby touch them too much and they make noise.  Keep them awake too much and they make noise.  This is no different for Johnathon.  The problem is he cannot with a tube down his throat.  So he throws a fit that causes his oxygen to drop, his blood pressure to go up, and his face to turn red.  We finally were ale to control this with some different pain medicines and by limiting his contact.

With this low stimulization policy in effect for now we are trying to wisper in the room and avoid touching him.  Becky and I agree that if this is what we must do to get him to surgery we can do this.

A new problem has developed the ecmo system is developing clots.  This is normal during the operation of the system.  The problem is some of the clots are in the oxygenation filter (the same one that broke on Friday).  If the clots get worse or more appear the oxygenation filter may need to be replaced again.  This is something we do not want to experience again if we don't have to. 

A special thanks to my hockey team the Komets.  We won our first game on Saturday and lost the second game in the shootout.  I even had the chance to take a shot in the shootout (I was unsuccessful but had a good time).  The greatest part of the evening was seeing the gold stickers with "JJ" on all of my teammates helmets.  This special tribute caused me to have some teary eyed moments as it told me how wonderful my hockey family truly is.  Also thanks to the members of the Grave Diggers for keeping us in their thoughts and prayers.

Thanks for everyone that gave blood on Friday.  I have heard of several more drives that are being arranged.  This is so awesome.  So far 19 units have been donated.  Unfortunately we have already exceeded this number in what Johnathon has used.  Please give if you can.

Another thanks to my Mom, Dad, and my Father in-law for taking night duty the past 3 nights so I could sleep in my bed.  Thanks to Erin and Mike for taking the hockey tickets off my hands and bringing the Stars a win.  Finally a special thanks to members of our care team for going the extra mile the past couple of days.  Your patience and understanding of us is so greatly appreciated.

Holding Pattern

Have you ever been stuck on a flight that kept circling waiting to land.  How about one that is dealing with rough weather and turbulence?  That anxiety of being shakened around and the can't wait to land feeling going through your head.  That is how we feel.  We feel secure to know that ecmo is our airplane that can deliverance us by keeping him alive, but can kill him too if all of the turbelence fell just right.  We are waiting for his plane to land and for the surgery to begin.

We have been holding steady with the exception of our turbulence when the ecmo filter sprung a leak Friday causing the machine to be turned off for 1 minute and 10 seconds.  Johnathon was forced to survive on his own.  With the steroids given to help him during this situation, it caused his blood pressure and pulse to go crazy.  This forced a delay in our schedule.

The best we can tell is we lost a day.  On Thursday we were 60-55% on ecmo on Friday it was 85%.  As of today we have krept back down to 60%.  We were hoping that the Doctors strategy of surgery on Monday or Tuesday would hold, but we are in our holding pattern now.  Waiting to land. 

Since it is so late I will continue this post tomorrow.  Tiredness has gotten the best of me after playing hockey tonight.

Progress

Dr. Sheren talked to Becky and informed her of our progress.  He felt we were in a position where we can start to reduce ecmo from 60% to 55%.  If this is successful we maybe looking at surgery on Monday or Tuesday. 

Unfortunately we had a little step back.  Johnathon made it all day at 55%, but by evening they had to move him back up.  They hope to try to move him down by morning to start the process over again.

Tomorrow night I am taking a break, so do not look for a blog entry until Saturday and/or Sunday.  Becky and I will be spending quality time away from the hospital tomorrow night as my Father is taking night duty.

On a side note don't forget the blood drive at my work from 8:30 am to 11:30 am.  I will see you there.

Michelin Man

Ever wonder what happens when your baby retains too much fluid? Yes he does take on the Michelin Man appearance. I am thinking of taking pictures and sending them to the Michelin tire company to get Johnathon a side job. May need it after I heard how expensive it is for some of these items he is receiving in his IV. Thank goodness for health insurance.

When ecmo does its job it causes fluids to build up in the body. Your kidneys can excrete so much before they reach their maximum capacity. This is what has happened to Johnathon. No longer the slim and trim guy he has become puffy. The Doctors had warned us of this situation, so it came as no surprise today when they started him on a dialysis treatment. On ecmo they have filter that the blood passes through that the fluid can be removed from similar to dialysis. To supplement the removal of these fluids they give him electrolytes from a very big bag (picture one of those bags you get at the grocery store filled with a clear fluid). The question I pose is, you must give fluid to get fluid back. In actuality this is correct.

We had some interesting things done by Johnathon today. He opened his eyes on numerous occasion as if to let us know he was doing good and to let us know that he heard what we were saying. He also started to become a frog man by positioning his legs in a weird frog squat style. I guess he thought that was comfortable. He is in a holding pattern as we wait a few days to make sure everything is settled down in his system. If things continue to go well he may have his surgery in about 6 days.

Special thanks to Cindy for organizing for Carter Blood Care to come to my work on Friday for a blood drive in Johnathon's honor. I know this brought a tear to both of Becky and my eyes. Thanks to the many new friends we have made while here. So many people have come up to me and said "you don't know me but your blog has taught me so much". It's special to know that our communication through here has inspired, compelled, relieved, and/or comforted others. When I first started this blog it was to help communicate our situation and to keep a log of our feelings for our son to one day read. Now I continue for so much more than that.

Keep fighting the strong fight Johnathon and I will keep letting others know of your battles. Love, Dad.

Staying Level

He has been taken off nitric oxide.  Ecmo has been turned down slighty and they are monitoring his kidneys and other organs to see how they are handling everything. 

Becky was discharged and went home to get some sleep.  Pastor Eddie came by today and said a wonderful prayer that helped to strengthen us and raise our spirits.  Thanks to all of our friends for visiting and meeting our son.  We appreciate the opportunity to share this time of our sons life with you. Though it can be overwhelming, we still appreciate the visit. 

Thanks to the Komets for wearing "JJ" on their helmets on Saturday.  Both Becky and I feel loved by our hockey family.  I heard it was a win, maybe it was the strength of "JJ" at work.

Blood Drive.
Because Johnathon is needing so much blood we are asking that you help out by donating at any Carter Blood Center donation site.  Just let them know you would like to donate for a blood credit to Baby Boy Rebecca Janis at Children's Medical Center of Dallas born on 11/11/07.  This not only could help save Johnathon's life but could help many others.  Right now this is the greatest gift you could give us. 

On Ecmo

At 1:05 today we received a phone call that Johnathon's condition had deteriated.  I rolled Becky in a wheelchair from Parkland to Children's.  When we got their we found out that his stats had dropped down to 48% oxygen in his blood and CO2 was up to 62. The decision had been made to put him on ecmo. 

We spent a few minutes with him, gave him a kiss, and told him we loved him before the surgeons started the operation to hook up the ecmo.  Dr. Hicks performed the procedure.  After about 45 minutes he and Dr. Garcia came in with Dr Sheren to let us know everything went well.  Dr. Sheren was happy that it took 30 hours to reach this level.  He said this showed he has strong development in his right lung.

Now we wait to see how long it will take for Johnathon to start to work off ecmo.  With the blood thinners being needed to use ecmo he needs to be off of it or close to it to have his surgery.

Thank you for all of the prayers.  We stay strong with every word of encouragment.  A special thanks to Kendra for being in the delivery and for staying last night with Becky.  A special thanks for all of the emails and messages.

Early Video From NICU

This was a quick video I was able to snap while his tubes and lines were put in. Shortly after this Becky was able to spend a few minutes with him prior to him being transfered to Children's Medical Center.

Becky is resting fine. She is tired from the 22 hours they worked on her for her inducement. She is in Parkland tonight. We meet with her Doctor in the morning to see if she will be released on Monday.

Johnathon is stable at Children's. I will know more in the morning and will post an update as soon as I can.

I'm off to get some sleep. Thank you to everyone who was with use for the past 22 hours. Thank you to those who were watching online. Thank you to those who sent emails and messages. Thank you to the Hospital staff at Parkland for helping Becky and making Johnathon's transfer to be a smooth one. Thank you to Children's for sending the transport team. Thank you to the Children's ICU staff for coming to help get Johnathon and for taking care of him while we could not be there. Thank you for all of the prayers. Thank you God for watching over it all.

Welcome Johnathon Hampton Janis

8:01 am 11/11/07; 6lbs. 7oz.; 19 in. long

We are Pushing

Real Close

Doctor is on her way to hospital now.  Looking real close.

Get a Mop

Water has broken and contractions are picking up.  Becky feels great!  She highly recommends epidurals.  Fentanyl is now her new friend.  By the way I have a used mop for sale, just don't ask where it has been.  We are placing bets we had to use the window as our tote board.

Epidural

They are starting the epidural now.  Becky is staying strong.  I was presented with my free 'Smurf Outfit',  (blue paper scrubs).  Pictures have been threatened.  We will see . . .

First Good One

We had our first good contraction.  This maybe a trend.  We will wait and see. 

Better Get Some Popcorn

Not going any where for awhile.  Drugs are going in and stats are going good.  Dr. Lo came by to say things are progressing good.  She order some broth and jello for Becky.  I hope she keeps that down, if not I've got $20 for her to projectile vomit on the TV.  Well time for my lunch break.

Starting the Process

They have the "bag of inducement" (pitocin) ready and are about to administer it.  Becky is feeling fine and we are keeping her laughing.  Visiting time is still open if you are coming by.  Thanks to those of you who have come by.

Room #

We are at Parkland.  3rd floor, east wing, room 2. 

Change of Plans

Big change in plans.  Becky spent all day Friday sick and unable to keep anything down.  This caused her to become dehydrated and it pushed JJ's heartbeat to 200 beats per minute.  The Doctors gave her 4 bags of IV fluids to help bring everything back to normal.  Because of the stress on JJ and his overreaction they are going to induce her in the morning (11/10).  Please pass this message along as many people were going to be at the hospital on Wed.  As I know more I will be updating the blog via mobil device.

Less Than One Week and Counting . . .

Well the time has almost arrived for JJ to make his appearance. Lots of happenings this week. We had the official tour of Parkland on Monday. Sometimes you forget how big the place is until you start walking around. Becky will delivering on the 3rd floor on the east wing of labor and delivery. There are 2 waiting areas. We have advised everyone to walk through the main one down the hall to the second one. It is much nicer and has some privacy.

We met with Dr. Sanchez of the NICU at Parkland. We discussed our situation with JJ's diaphragmatic hernia and of the different outcomes. We also discussed our wishes of life saving measures and how far we are wanting to go. We also discussed our intentions to have JJ moved over to Children's Medical Center as soon as possible. Dr. Sanchez agreed to discuss our case with Dr. Thompson at Children's to make sure they were on the same page.

We finally were able to meet Dr. Harrison from UCSF in person. It was great to finally shake his hand and thank him for taking the time to consult with us regarding our case. His lecture was extremely informative. I am still amazed at all of the surgical work that he has pioneered and what they are able to accomplish. It made both Becky and I feel so happy to know that he remembered our case. Dr. Lo informed us that our case to be presented to Dr. Harrison for a further review by the surgical residences at Children. Wish we could have been a fly on the wall for that one.

Dr. Lo met with us today and told Becky she is progressing well (1 cm dilated and 50% effaced). We are still on schedule for inducement for Wed. We have to check in at 7am and are not expecting any real action until around noon or after.

A few changes to our pecking list of Surgical Doctors. Dr. Garcia's has a family member that has fallen ill and she will be leaving to take care of them (please keep her and her family in your prayers). Dr. Megison has a large family event planned shortly after delivery which would leave him unavailable to care for JJ for a period of time. So our new Surgical Doctors are Dr. Hicks and/or Dr. Schindel. I have not met them, but I have heard many good things.

Special thanks to Karen and Cindy from my work. They have helped out the past several weeks with several important items and have been there for Becky and I to share some of our thoughts with. Another thanks goes to Julie and Kendra. Both have helped Becky in keeping her sanity while staying at home. Thanks again.

On the Hockey front . . . this Saturday will be my last games for a period of time (how long I do not know). We lost our exhibition game last Friday 4-2. I played center for the whole game and had the an assist on the first goal of the game. I played well enough that the Komets asked me to play center again on Saturday (I was a little slow as this was the 3rd game in 2 days). We lost this game 3-1. On my other team the Grave Diggers we won 3-2 on the early game on Saturday. I played right wing for them, with my concentration on playing defense on the other teams best player (who just happens to be 4 inches taller than me and about 100lbs lighter, but boy can he shoot the puck). Next game is Saturday 11/10 at 6:45pm (Grave Diggers vs. Brewzers) and at 9:15pm (Komets vs. Puckers). I hope you are able to attend at least one game. I think Becky is going to try and attend the first game if her blood pressure is well. See you there.

JJ's Halloween Costume

Not much to report. Becky's Doctors appointment went well. Everything is still moving toward an inducement on the 14th. Her blood pressure has come down some, but the Doctor wants her to continue to stay on her modified bed rest.

Upcoming schedule . . .

11/5 We have a meeting with the Neonatologist at Parkland to discuss the timing and transportation of JJ from Parkland to Children's Medical Center.

11/7 We finally get to meet Dr. Harrison from UCSF. He is in town to deliver the "Grand Rounds" at Children's and we have an invite to attend. Don't worry about Becky's bed rest all of her Doctors will be there (I think there is at least 10 of them involved in our care as of now).

11/8 Last visit with the Doctor before delivery.

11/9 Becky's "House Cleaning Party"

11/14 The big day or as I call it the beginning of Becky's new diet. I can say as of now she would definitely loose 5lbs 15oz. (JJ's weight as of today). I know she can't wait for that load to come off her joints.

For Halloween Becky decided to dress JJ up. I hope you enjoy the picture . . .

PARTY!!

Since Becky is stuck at home and we are foregoing the traditional baby shower at this time, a house cleaning event is being hosted by our friends instead. I hope you can make it. Click on the image above to see the invitation.

That Spark

We all know those moments in life where we have a spark that has pushed us to exceed beyond our normal self. Those times when we were running slow and something or someone pushed us along. For me I have always found inspiration from many things (Mom's smile, the joy of friends, love, and inner desire). Sometimes we reach a point where those normal sparks aren't there and we become lost . . . almost trapped in ourselves.

Ever since we have found out about JJ and diaphragmatic hernia's I have tried to provide the spark for Becky and our families. One of my contribution was through hockey. By providing us something to talk about other than the life and death situation that we are facing with JJ, it kept our minds occupied and fresh. I myself first gathered my inspiration from taking a piece of tape and taping it to the back of my hockey helmet with the letters JJ on it. Every time I would put my helmet on I reminded myself that no matter how bad it gets tonight my fight is nothing compared to my unborn sons future battle. As I would grow fatigued during the game, I would look up from the bench and see my family and friends there rooting me on. Most of all I would see Becky smiling. I would then feel energized ready to go again ready to battle.

This past weekend I faced my toughest battle by playing in 3 back-to-back-to-back games. Something that I saw as a challenge. No matter how strong I felt I knew I could do it. However when my night started off rough I lost myself. My thoughts turned to me and I could not get my head into the game. I would skate to the bench and stare up at the Crossbar looking for a face of anyone I knew. No one was there, no family, no friends. I felt all alone with a tough challenge ahead. With Becky stuck at home on bed rest and unable to attend, I still could not get her out of my mind. I kept searching, hoping to see her. I kept looking for my spark. After 8 years of marriage its good to know that I still need her so much in my life to help provide me with that spark.

After completing my first game, a blowout loss by the Komets to the Patriots, I went to my other teams locker room. I was hoping a cool drink would do something to set me right and get my head into the game for the next game. Just when I felt at one of my lowest with nowhere to turn, something changed. You never know when something else will provide you with a spark but it happens (whether its divine intervention or just part of life sparks can appear). It took two people to do what one of Becky's smiles does to me. My fellow teammates (and friends) Mel and Alex provided that spark to me. They pushed me in the right direction and kept me going. Their words of encouragement gave me the spark I needed. Thanks to them my toughest night became a lot smoother.

Even though we lost our second game, we fought hard and stayed strong to win the third game of the night. Even though my other team the Grave Diggers did good, it was the spark that Mel and Alex gave me that carried me through it all. When I came home and saw Becky I felt that spark grow stronger. I could tell even though she was not there with me, she was there mentally the whole time. Just remember we can't do it all and when that spark is missing from its normal place have faith that something else or someone can provide you that spark. Oh and also remember that after 3 games of playing hockey you will have soreness in places that you would not know muscles existed. We will talk about sparks of pain another time.

The Big "B"

Well today Becky started her vacation early. After a morning of pictures from the MRI, Becky had her appointment with her Doctor. We discovered that her being exceptionally tired the past week and finally suffering through a tougher than normal night of sleep (the previous night) this was Becky's pregnancy moving in another direction. Dr. Lo confirmed that Becky's blood pressure was too high and she needed to reduce her activities. The exact terminology being "modified bed rest".

What does "modified" mean in this situation? Well let me tell you I envisioned Becky unable to leave her bed and needing ropes tied from the bed to the bathroom door that she would use to pull herself as she crawls on the floor. Thoughts of all of that rope I had saved up in the garage finally having a usage danced in my head. My "MacGyver" instincts soaring high at this point, the Doctor turned to me and said "she will just need to stay in bed, limit her activity to within the house, and to lite duty". What? No rope? No training Haven our dog to bring her nourishment. Well I guess that fine for now, but I will keep that rope handy and Haven is learning how to use her dew claws as opposable thumbs.

The MRI pictures were not too clear, as JJ let us know that he did not agree with the loud banging noise from the MRI and thus was unwilling to remain still for the pictures. The Radiologist was able to get enough resolution on the pictures to get the measurements needed. The lung growth on the right hand side has continued but the left hand side is still not showing to be present. Our only hope is that at birth some form of lung will inflate from an extreme flattened state allowing him to have 2 functioning lungs. All in all the news was the same, no real change. However we did have a plus as no new complications are forming and no signs of stress on him was present. So I guess you could say we are still in the same boat with the same hole, just now we have a dixie cup to start bailing with.

Ok here is the big announcement . . . We have talked to the Children's Medical Center and to Carter Blood Center. Because of the amount of blood JJ will need on ECMO we are making arrangements that you can donate at your local blood bank and they will credit this to JJ's account. Whether JJ survives or not we know that blood provides the basis for so many people in the hospital. It really is an easy thing to give and only costs you a few minutes of your time. I have contacted some of my co-workers at work and have asked if they could help us in arranging this effort and getting the message out. According to our arrangement with Carter Blood Center, once JJ is admitted into Children's the donations can begin. I hope to have flyer's posted and a notice on this blog when this will begin. Please check back for finalized details on this.

Since Children's is providing us internet access, while we are waiting for the stabilization of JJ in the ICU I will be making posts to the blog during this time period. I will update you on how Becky is doing, how everything is proceeding with JJ, and how the rest of the family is doing. This will give me something to do while I am anxiously waiting in the waiting room. I will post something next week as Becky has a follow up with Dr. Lo and the score of my hockey games.

Tour Day

I completed my tour of the ICU - ECMO unit. Very interesting and educational time. I was able to see the ECMO pump and watch how it operates (boy that is a big tube they pump the blood through, almost as big around as my thumb). The ECMO Specialists recommended the following website to read up on the process in order to have a better understanding of how the pump works http://www.med.umich.edu/ecmo/patient/guides.htm.

A personal thanks goes to Sabra and Tamikia for taking time out of their busy day to show us around. It made both Becky and I feel quite comfortable with the difficult road ahead of us. There were so many people we met (sorry I have too many names running together with everything else to get them all correct at this time), and each and everyone of them greeted us with the same great kindness making us feel safe with the care they will provide. One conclusion that I did draw from our discussions is that no matter what occurs we truly have the best team arranged to handle everything. This makes our previous decision not to go to San Francisco (and have the surgical procedure performed there) the right one.

Big day tomorrow, it's "Picture Day" for JJ. I hope he does ok. According to Becky he is running out of room in there and so this should help him stay still during the MRI. I will post pictures as soon as I have them.

I have received some more requests to help us out. Becky and I are working on something that everyone possibly could do that will only cost them a little of their time. Should know more on this tomorrow to make a formal announcement.

I would like to dispel the rumor that Becky went into labor early. However I would like to complement the ICU team for a very good job in prepping the unit for us even though we did not need it. It's safe to say you past the test! Not sure what caused this to occur over the weekend, but by the response we heard it made both of us amazed at how fast everyone was prepared for everything. I promise no more false alarms, though getting a phone call asking if your in labor when you answer the phone is quite funny. I know Becky likes her cellphone but if she takes it into delivery, I'm cutting her and her BFF off for good (for those of you who do not speak text that means best friend forever).

On the Hockey front, it was a disappointing weekend all around as all my games were canceled because of a scheduling problem with the officials. Everything is fixed and back on track. We hit the ice Saturday 10/27 @ 7:30pm Komets vs. Patriots. I have also been asked to help out with another team (formerly known as the Leftovers) at 8:45pm. Should make for a busy night and some great exercise. Our Heineken Cup game in Grapevine is now scheduled for Friday 11/2 at 9:00pm. Looking forward to that one, as I will use it as an experimental game to try new positions and playing styles (time to see if I can turn into a goal scorer).

Schedule Changes

Just to update some last minute changes. My visit of the ecmo unit has been moved tentatively for next Tuesday (10/23).

The hockey game in Grapevine has been postponed due to a figure skating competition. Tentatively this is being moved to next Friday (10/26).

The first hockey game of the new season is this Saturday (10/20) at 7:30 pm.

Picture Time!!

When you see what appears to be a foot at your baby's face many different thoughts cross your mind. How did that get there, is he ok, is that suppose to happen like that, great now I know what's causing those pains for my wife, and (the best of all) a future NFL kicker (Daddy's got a new retirement plan).

Just in case you had to blink twice I provided both pictures of what I can only term as "my wife's child" as I have always lacked the flexibility to do anything remotely like this. This was probably JJ's most photogenic moment in awhile, so much so that we even witnessed him scratching his nose with his toes.

Busy visit with the Doctor this week and busy schedule coming up. Let me start with thanking Becky's co-worker for arranging a tour of the ECMO treatment area of Children's Medical Center. Becky had a chance to tour this Saturday night and to meet with one of the Specialist. After seeing all of this everything seamed to hit home again with Becky. I think she feels the need to try to be overly cautious with me on the physical state that JJ will be in on ECMO. I have to remind her that I was present for my brother when he was being treated for his burns and I remember seeing some of the worst stuff that I would not want to even describe to this day. All during that time period I kept reminding myself that our loved ones who are in this state must go through these unnatural phases as a means of healing.

Though JJ will be puffy like the Michelin Man with a purple-grey tinge to his body,no matter what he is still our son. My dealing with his physical condition is part of the healing process for me, as he is dealing with the internal healing on his own. Whether he makes it through all of this or not I will still have many wonderful memories, just like the other night when I thought he was going to poke his hand through Becky's belly to shake mine. I am scheduled to take my tour this week, so I hope to give a better report next week of things we may possibly need if and when he gets to the ECMO unit.

Dr. Horsager evaluated Becky and has asked for another MRI to be performed to see where lung development is at. This will provide us with a better gauge of what to expect survival wise, and immediately after delivery. This is to occur on 10/25 (be on the lookout for some more of the really cool pictures).

Becky's inducement date is still scheduled for November 14th at Parkland.

****Baby Shower****
Becky and I have received many questions regarding when this will be. We decided that we will forgo the customary baby shower at this point. Since JJ can be in the hospital for several months, it will be best if we hold off and have a coming home shower for him. In lieu of that many of Becky's friends are doing a house cleaning party for us. This will be November 9 from 1pm -5pm. Everyone is more than welcome to attend.

On a side note, I will be participating in the Euless I-League vs. the Grapevine I-League Heineken Cup Hockey game on Friday 19th at 9:00pm at Grapevine Mills mall. I would love to see you there if you have no other plans that night. It should be a real fun time. The new season starts on the 20th back at the Dr. PepperStarCenter in Euless.

False Alarm - It's not just a chili (a satire on our real life event)

We had the false alarm today. A good ‘ol case of Braxton Hicks. Turns out even though Becky had already drank well over 32 oz of water she still needed more fluids. Dextrose! The sugar of life was all that was missing from her H2O. I guess Becky was just not sweet enough. Upon first waking from my restless night of sleep I would have agreed, however since my 4 hours of sleep was trumped by her 2, she won no grief from me.

Let me say that Parkland is a very nice hospital from the outside at 4:00 am. At 9:00 am it is time to run and hide. Going in I made the comment to Becky that walking around outside holding her plastic bag full of clothes would allow me to fit in (boy was I right about that one). I also enlivened the Nurse Practitioner when she asked what had brought us in with my reply of “we had nothing better to do than get up early in the morning and come hang out here”. Fortunately she enjoyed my sense of humor.

Becky stayed strong (and awake) the whole time, not letting the galloping noise of JJ’s heart beat drive her crazy. If you have not heard a fetal heart beat on a monitor before, let me sum the noise up this way. It’s like attending a live performance of Monty Python and The Holly Grail. Cue the coconuts and make a galloping horse noise with them at about 125 – 197 beats per minute. Onward Calvary we are going to bust our way out of here, possibly was the thought JJ was thinking this morning. Sorry to ruin your fun son, but you need to bake longer.

Becky is feeling great no more contractions, though I think the male nurse summed it up the best when he told Becky and I that “the uterus is a crazy thing that no one really understands” (I thought he was going to break out into a performance of “Menopause the Musical”, I saw enough commercials for that in Las Vegas). With that being said whether it is water, dextrose, JJ, or even just the uterus that causes these false alarms I feel sorry for John Braxton Hicks (JBH). This poor man has his name cursed at by many men who wake up in the middle of the night and drive their wives to the hospital to only watch her being monitored and refreshed with fluids.

I have chosen not to curse JBH, instead I will take my grief out on the hospital and health care companies for making me pay so much money for a microphone hooked up to a speaker and a bag of sugar water!

Tonight I sleep (hopefully I am not eating those words).

. . . To all of my enduring hockey fans we lost Saturday night 2-1 in the Stanley Keg Championship. Thank you to David, Christina, Scott, Warren, Laura, WC, Mary Bob, and Becky for being there and showing your support. Thank you also to everyone else who were unable to make it and offered support. Also thanks Becky for being the team nurse and helping Sergio out after he broke his leg (I know she wanted to get back out on the ice, this just was not the way she had in mind). We sure are going to miss Sergio next season. I pray for a speedy recovery for him.

Back to the Championship

A battle of epic proportions will be occurring this Saturday (9/29) at 9:00pm at the Dr. Pepper Star Center in Euless. My hockey team the Komets have qualified again to play for the Stanley Keg. After a long season (some of which I endured on the disabled list) we have accomplished a great feat by finishing with a 6-1-1 record for second best in the league. We will be playing against the Patriots who gave us our lone regulation time loss. It should be a great one.

The best part of all is our Team Captain decided to buy us team logos for the front of our jerseys. Unfortunately it will take 10 days to get them put on and to get our jerseys back. We are now all going to wear different jerseys to play in the game. I guess that will make a statement of my rag jersey team against your professional looking jersey team. Go Rags!!

If you are able to come we would love to see you there. Please call Becky or me on our cell phones and we will arrange for some seats to be saved for you. Just remember if the game goes bad their is a pretty nice bar upstairs. You never know I might actually join you for one.

See you there!! and GO KOMETS!!

Things are Starting to take Face

I thought I would give Stephen a rest and make a post. Well back for another appointment and JJ did very good today for us. Stephen could not make it to this visit, but I had 2 very special people with me to see our little one in his womb. He kicked, moved around, and tried to hide from the sonogram tech like always. However this could have been caused by the glucose drink I had to take. Everything looked good with him. He is growing and now currently weighs 2lbs 15oz. Each sonogram I have closer to my due date makes my heart break even more. With today's sonogram we got to see my little boy moving his mouth and acting like he was smiling at the camera. He was also practicing his breathing with what little lung he has on his right side. Seeing his little chest move up and down made tears come to my eyes. It hurts to know that he is fine while inside of me and once he is born he will have to fight for his life. With each kick and move I feel it hurts even more that he has to go through all of this; I wish I could take away all the pain and hurt that he will have to go through. This all really sucks and the emotions that I feel range from anger to pure heartache. I know God will continue to make me stronger for when JJ gets here. Each tear I cry is for him and for him to continue to be strong like his Dad. I know it is hard for Stephen at times to understand what I am feeling and what I am going through for our little one. He has been a great husband and I know he will be a great Dad for JJ. I wish at times Stephen could feel him move and kick all day and have the bond that has already grown between us. I wish Stephen could have seem him today trying to be a big boy taking those little breaths and smiling at us, but just don't tell JJ there will be more picture once again in 4 weeks. I know he can't wait. The love we have for this little boy grows everyday and with each time we see him it grows even more. Mark your calenders, November 14 will be the day I get induced. My real due date is November 25. We had to work around the Thanksgiving Holidays. At this point I am not ready yet for what else is to come, but I do know that JJ will be Thanksgiving this year and I am looking forward to the chance to see his face in person and not on the screen.

Back At It Again

It's official. I have been cleared to resume my hockey play. It's been 4 weeks since my shoulder surgery and I have been cleared to play this Saturday. I have been performing my physical therapy exercises everyday (sometime 2 - 3 times a day) working toward this day.

Today was the toughest test yet. It started with a 6:00 am hockey practice followed by an ice down session and then a midday physical therapy session. This put the shoulder to a strong test, with remarkable very little soreness. I have been asked to take it easy in my first game back, and I have agreed to this. My focus will be on a more skillful game and not the banging type I am becoming known for.

With the start of the football season it is time to start spending Sundays watching the Cowboys games. I need Becky to go to a school that has a football team so that I can start supporting a collegiate team. This maybe something I should consider when I decide to go back to school. I do however look forward to TCU playing Texas (I am rooting for TCU). Just 11 more days until the Dallas Stars first pre-season game. Too more sports starting at the same time.

I found one great thing about having a son in the house, control to watch the football games. Becky enjoys the Super Bowl and a couple of Bowl games, however everything else is not her cup of tea (she always changes the channel). Even if JJ does not know what a TV is, I still think he needs the positive influence of sports on him at any age. Well that's my excuse and I am sticking to it.

I had a great time catching up with my old friends Lewis and Doug (down in Austin). Glad to see both of them are doing well. I miss not having them around in the area, but I try to catch-up with them every few months. When I got home I was able to spend some time with David. Sounds like he is working on some major food projects, hopefully we may see them in the stores soon (I hope he invites me to be on the test panel for some of them).

I hope everyone else is doing well. Look forward to seeing you soon.

Protest

Today JJ went for his normal sonogram. However our normal sonogram turned into being a 3D snapshot. The only way to explain this picture is by JJ telling the story . . .

Today my Mommy took me back to that place again. It all started with me resting comfortably in my womb. I can tell we were driving as the hum of the engine puts me to sleep. I think Daddy was driving for the first time in a long time, because Mommy seemed relaxed. She walked a little bit and then stopped. I started to fall back to sleep. I could feel Mommy stretching out, then all of sudden it happened! That thing starts pushing on me!! It was light at first and then a little harder. My gosh Mommy tell them to stop, I kicked. This did not work so I pushed back. Still they kept pushing on me. Then to make matters worse when I get comfortable they start thumping on me. That was it. The very last straw. So I said I hope you see this out there you "Losers"!

Sorry JJ. How about Mommy and I take you back for more pictures in 3 weeks (better not say that too loud).

Decision

Today we were faced with making a decision on where we go with the UCSF procedure. Originally we thought we would have longer, but after a 45 minute conference call with Dr. Harrison we found that time was of the essence. The plan presented was for us Becky to go to UCSF Monday, have testing performed, meet with the 20 other Doctors on Tuesday, receive a prognosis for success, and have surgery performed on Thurs @ 1pm.

After reviewing our notes from all of our Doctors, we have come to the conclusion that we will not have the UCSF procedure done. Though this decision by far was the hardest we have ever made, it was not made without shedding many tears. The decision to go or stay is one that is terrible either way.

If we go we risk pre-term labor. If this operation led to JJ being born early then it would not prove effective in giving him the best chance. Every premature baby has some issue that requires some extra handling. In JJ's case the best situation is the least amount of handling. We also risk Becky using more than the amount of time she can be off from work under FMLA. Becky and I would like to be present when JJ has surgery or if his outcome is bleak we would like to be there till the end. To run the risk of losing her position or income could substantially hurt us in the long run with JJ's care. Becky does not need anymore added stress than what she is already experiencing. Becky has arranged for the best possible care that is available (confirmed by Dr. Harrison). The surgical procedure would only act to improve the length of time JJ would need ECMO and other treatments. It had no true effect on survivability. JJ could be born in San Francisco and Becky would have a limited support system.
Our 30 day stay could turn into months.

If we stay we may have not given JJ every effort to make his life start off better. We run the risk of always looking back on this decision and saying we made the wrong choice. JJ could end up being on life supportive measures so long that he would develop brain, lung, or heart damage. Proper care from the beginning becomes imperative as every second will matter.

We live in a world of "what ifs". Though it is natural for us to always question "what if", sometimes too many "what ifs" become more overwhelming than what one can handle. Going to San Fran would be a radical and aggressive move full of its "what ifs". Staying here is a more conservative treatment filled with its own "what ifs". Sometimes having the fewest number of "what ifs" brings you more comfort. This proved to be one of those times.

Though we still have a window to change our mind. I will say that tonight we go to bed with much on our mind, maybe a good nights sleep could bring a different perspective. But I leave that "what if" till another day. Please keep us in your prayers as they have delivered us to where we are today, and they will be needed to deliver us to better days.

Fast Developments

Everything has started to move at a fast pace. We have met the criteria to participate in the surgical procedure being performed at UCSF. Dr. Harrison, the head of the program, has contacted us and has requested that we come to San Francisco next week for final testing and prep for surgery next week. Even though this news is great we still have a couple of large hurdles that must be crossed.

First we are working with the health insurance and the Doctor's staff to find our out of pocket expenses for this procedure. We hope to have this finalized by Friday. If the insurance will cover the procedure and all of the testing involved then this improves our chance of having the procedure performed

The second hurdle is that we still have questions on the ability of the procedure to provide an overall improvement in the survivability of JJ. We are scheduled to have a conference call with Dr Harrison to discuss the impact of the surgery and the positive/negative outcomes from the procedure.

We have already started to make preliminary arrangements in case this is the path we are to go down. To really complicate matters, we are scheduled to travel to Las Vegas to spend the weekend there with our neighbors. A fun trip, we would hate to miss out on this bit of rest and relaxation time. We are really needing it with everything that has been going on.

Just an update I started physical therapy yesterday and the physical therapist said my range of motion is ahead of schedule. I will continue my rehab and should be released from restrictions by next week. A big thanks to my co-worker Cindy who was nice enough to pick me up and give me a ride to work today for a meeting. Working from home has helped me get caught up, but I do miss the office interaction.

In My Defense

In my defense that picture was taken less than 5 hours after surgery. At that moment I had already received15 mg of morphine, fentanyl, and demerol. I guess next time I will try to hold my "narcotics" better.

Regarding the comment from my brother . . . he is disowned.

Just an update I am feeling good. Dr. Kwong removed a large bone spur that was cutting into the muscle and drained my bursa. The bone spur proved to be larger than expected. On the final x-ray after surgery it looked as if easily 1 cm of the bone was removed. I am still on ice packs and will start my physical therapy on Tues. I have already started to gain some movement back.

Good news Becky has been accepted on the first round evaluation by UCSF. We have sent in the files/reports and are awaiting the Doctors to review it. The Doctors are scheduled to meet on Tuesday so we may know something soon. I will post something by the end of the week on what we hear.

Blackmail Picture

You should have been there when he fell asleep in mid sentence. It's priceless and scary at the same time. Stephen it's time to lay off the pain medicine.

-From the ones who love you the most.

Still Kick'n

Stephen made it through surgery just fine. Two bone spurs (larger than expected) were removed. The spurs were actually found to be cutting into the muscle causing a large portion of his pain. His bursa had to be drained as it to was enlarged from irritation. Rotator cuff was fine, but the labrum did show slight fraying from his baseball days (no repairs needed).

After waking from anesthesia Stephen was nice enough to tell Becky how beautiful she was and asked her if she would marry him. Her response was to let him know that they were already married, of which he acknowledged that it was good to know that.

He's home resting now and "blackmail" picture should be posted soon . . . .

Komet's WIN!!

A tough hockey battled ensued Saturday night as the Komets went toe-to-toe with the Warriors. In the end it took extra time to decide a winner as the game went to a shootout. Led by our Asst. Captain Rich ("No Brakes"), he was able to lift a wrister above the outstretched glove of the opposing teams goalie. This gave the Komets a 3-2 win. My game was nowhere near my expected level as the aggressiveness (from the other team and on my part) kept me laying on the ice. At the end it was tough to walk away from the locker room (due to dehydration and emotions) as it was possibly my last game of the season.

Wed. morning I will have an arthroscopic procedure performed on my left shoulder to remove years of abuse from baseball and other sports. Though I should be fully rehabbed in 3 weeks, we may be heading off to San Francisco at that time period (thus ending my hockey season). Becky has been diligently acquiring all of the documents and pictures that UCSF needs to make a rule on our candidacy. Our local Doctors feel good about our chances and have all stated that if we can do the surgery to go for it.

Today we met with the surgeon who we are requesting to handle JJ's care after birth. Dr. Garcia is a very strong surgeon who has experienced dealing with these situations before. She is very aggressive in her approach but did carry a good point. Children born with the high complexity of JJ's case have limited amount of time to make all of the right moves. By acting swiftly we are improving what odds he does have. Dr. Garcia did explain to us what ECMO really is.

ECMO is a life sustaining measure done on infants in dire needs. Essentially they cut into the right side of the baby's neck and hook a machine to it's carotid artery. This will help oxygenate the blood (while thinning it at the same time) to reduce the pulmonary hypertension. Side effects range from hearing loss to death. Once ECMO is not needed they simply detach it and close off the carotid artery on that side of the neck, essentially leaving the child with active arteries only on the left side.

Again ECMO is reserved for the worst of the worst. However it will probably be JJ's only hope. Regardless if we have the procedure done at UCSF JJ''s life will begin with him gasping for air to fill his undersized lungs. Every breath will push the sides of the lungs against his heart causing a risk of damage to it. His stomach will be flattened (see any old picture of Arnold Swartznegger posing during his muscle days to with his chest wide and stomach sunk in to get an idea). Doctors and nurses will try to get him to breathe nitrous oxide (because of the ease of the gas to access the lungs) as a means to facilitate breathing. Once a semi-stabilized state is occurred he will be rushed to surgery to remove the organs from his chest and/or to attach ECMO (if his lungs are developed enough ECMO may not be needed). After some recovery JJ will undergo more surgery to clean-up or take care of what has not been done in the previous surgery's. If he can survive all of this after about 2 - 3 months he would be in a better position. By month 4 he will start to normalize into his actions, however he will have a tendency toward being slow to develop due to all of the medical procedures and treatments. Once past 1 year of age life for him will be normal. Though long term problems from ECMO may or may not be present he would be considered a survivor.

I hope to have Becky post on Wed. after my surgery to let you know how I am doing. Until I post again thank you for your support. As you pray for my family I pray for yours as I am reminded daily how wonderful everyone is who has come into Becky's and my life.

No More Pictures

After 3 consecutive weeks of pictures JJ said enough is enough. He crossed his hands in front of his face in disagreement with the sonogram. I am sure he is really mad at us if he heard we will be having more pictures taken every week for the next 3 weeks.

Good news . . . decisions are now being made for us. Finally the burden of decision making is in the hands of the Doctors (at least for now). Bad news . . . the procedures are not easy. After a lengthy conversation with Dr. Horsager we learned that we do present with certain criteria that make us a partial candidate for a surgical procedure at the University of California at San Francisco Medical Center (UCSF). The procedure requires them doing a laparoscopy then inserting a balloon catheter into the baby's trachea. They then inflate the balloon and leave it in for up to 4 weeks. This allows for the amniotic fluid to be pressured into the lungs more and push for greater development. After 4 weeks the catheter is removed and after a few more days in the hospital Becky would be free to return home and hopefully enjoy a normal delivery. This would reduce some of the major breathing risks that JJ currently has and give him a better chance of survival.

Dr. Horsager was concerned with the right lungs volume as it has decreased slightly from the other organs growing around it. She did mention that the left lung could be flat and thus not showing up on the scans. We are waiting to see if the UCSF procedure will help improve this lungs development as well.

Dr. Horsager is going to get in contact with UCSF and find out where we stand on matching to all of their criteria. We should know more in the next 3 weeks on this procedure. If we are not candidates we will start to make plans for a lengthy list of surgical procedures that will follow immediately after delivery. As it stands now the risk for survival without the UCSF procedure is still 10 - 20%. We hope to know what percentage we have with the procedure in the upcoming weeks.

Becky has scheduled to see a new Doctor (Dr. Lo) who will handle the delivery. Dr. Lo is a UT Southwestern professor and a specialist on high risk type pregnancies. This makes it official that the delivery will be at Parkland Hospital (I hope our good friend Kendra is working that day).

We will begin looking into the logistics of living in San Francisco for the month of Sept. Fortunately my work does have a property that is less than 1 mile from the hospital. We also have an area office out there which would allow me to work without having to take too much time off, while still being nearby if Becky needs me. It sounds like she would have lots of bed rest. I will do some more investigation into this procedure and put some more info. on the blog this weekend.

Thanks for so many of the prayers.