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.