Eye Surgery Day 1

Today we began early having to be at the hospital by 5:30 for Jake's 7:00 am surgery. The goal was to operate on the muscles in Jake's eyes to attempt to get them to work together versus independently of one another. As mentioned previously, we were told it was a now or never proposition for Jake. Operate now and have a chance at saving the eye function otherwise the damage would be done and Jake's eyes would never work together. As a parent, it's never great to operate just to have a chance but as we have with all of Jake's medical care, we will do whatever's possible to give him the best shot in life.

Jake was surprisingly happy while we were waiting during admissions and then in the surgical wait room. They give Jake medicine that was designed to make him silly and drowsy so when we turned him over to the medical staff he wouldn't object. Jake acting a little drunk off the medicine was giggling away and entertaining us all in the waiting room. Once they brought Jake in, we went downstairs where we watched a little of the USA v Algeria World Cup match. This only increased the anxiety levels as the US missed what seemed like 20 chances in the box and went to the half tied up. At that point, we continued our wait with Sam's parents who generously joined us for added support. Before long Dr. Friedman gathered Sam and I to discuss the surgery. He did indicate that he found an unusual aberration in one of Jake's eyes where basically there were threads but no real eye muscle for him to work on and bring the eye lower down in an effort to line it up with his other eye. Interesting enough, Dr. Friedman relying on his 30+ years of surgery found that the other eye was pulled very tight by the muscle so he decided to try to loosen that muscle up and bring the lower eye up versus move the higher eye down. He hopes this solution will work and the brain will take over to keep the eyes aligned. We will see if this will work and as we mentioned this is probably a 50% chance that it will work. One other item to note is that prior to Jake's eye surgery he did not have any depth perception. This surgery may be able to fix that but again we are going to just have to wait and see.

Seeing Jake was an emotional roller coaster, our boy was thrashing about as he woke up from the anesthesia and it was tough to calm him down. He was disoriented and kept wanting Mommy then Daddy then Mommy then Daddy. After 15 minutes, Jake calmed down and we were able to relocate outside of the initial recovery area. There Jake fell into a deep slumber to which what we thought would be a few hours turned into an all day affair. Jake would sleep then wake up and throw up and this pattern repeated most of the day. An expected reaction to the drugs and the pain medication but not to the extent we thought. By 4 we decided to push for his release as he kept asking to go home. We made it home only to have Jake throw up some more after we tried to get him to eat a little food. He was lethargic but being home and around his brother and sister helped lift his spirits. We are a bit worried as he threw up again and we will have to take him to the ER if it happens one more time as instructed by his Dr. For now he is in bed sleeping so we hope he can rest it off and we can put this long day behind us.

One other thing to note, when we went to see Jake the USA was in the 88th minute tied up, it was later that I found out the USA found magic in stoppage time at the same juncture we were seeing Jake for the first time. A great moment all the way around.
Thank you all who reached out with their concern about Jake.

Eye Surgery

Today Jake has his pre-op for his upcoming eye surgery on 6/23. The surgery will attempt to strengthen Jake's eye muscles in both eyes to help them work together instead of independently. We were hoping to wait till Jake's midface surgery since they have to move the eyes anyway. We visited two of Jake's eye dr.'s to see if we could wait but both agreed there would be too much damage done and we wouldn't be able to correct the situation. It's been a nice break from the operating room for us as Jake's last surgery was in May 2008. We have some relief that the procedure is an outpatient procedure and Jake should be back to normal after a few days. We'll keep our fingers crossed that they can repair the eye muscles and potentially restore depth perception which they feel Jake may lack in both eyes.

Jake Eye Update

We decided to take Jake to a local eye dr. just to make sure he was doing okay since our last meeting with the eye dr who is part of the craniofacial team. the original diagnosis was that Jake has strabismus (lazy eye) in his left eye but controls it pretty well. The Dr. felt that Jake doesn't need surgery on his eye now as they will have to move and reconstruct the orbital sockets and eyes in his midface surgery down the road. The other dr. takes on a different viewpoint and feels Jake should have surgery to fix it now. We are going to meet with the original dr. to assess which opinion is correct and best course of action for Jake.

Jake is now wearing an eyepatch over his right eye to strengthen the weaker eye and will be getting glasses as he is farsighted. Jake doesn't like the eyepatch but with each day has gotten better accepting that he has to wear it. In order to help with the process, we called on an old friend to make Jake feel good about his new situation.

Children's Hospital Annual

Well, thankfully our trip to the "unhappiest place on earth" is over. I truly believe this place is the antithesis of Disneyland. Seeing other families enduring difficult situations and very sick children can only weigh on the psyche as you sit and wait hour after hour to meet with the overworked underpaid dr.'s who have chosen to help children versus getting rich off being plastic surgeons.
Today went well. we met with an exhaustive number of specialists all part of the craniofacial team. Hearing, Speech, Dentistry, Genetics, Craniofacial, Pediatrics, and Development Psychology. Jake got really good reports and everyone seemed to be very encouraged by Jake and the progress he has made. They can make certain assessments now that he is older and 2.5. We are fortunate that it appears Jake does have a milder form of Apert and his progress is a long way off from the worst case scenario grim reports we got when he was first born.

Now decisions will have to be made if we want to switch to Children's versus Cedars and they both have pro's and cons. The 6 hours there today was draining but if we can keep these to just annual meetings its not so bad.

That's the quick update now but it looks to be a quiet year for Jake in terms of medical needs in 2010, something we welcome with open arms.

Annual Check up

Well, its been a while since the last post and for good reason. Jake is enjoying his time away from Dr.'s and hospitals and just being a little boy. Thursday brings a mininum of 5 hours of meetings with the entire Craniofacial team at Children's. We always develop a little anxiety heading into that hospital as any parent should feel but with the trips come a mixture of emotions. Always hoping there aren't any unforeseen complication or issues that need medical attention and some relief as any trip there reminds us that things could be much much worse. This is an interesting trip for us as we traditionally were seeing the team at Cedars but are starting to think we may switch to Children's. Our biggest apprehension always being the zoo that is Children's Hospital but I think the team and structure is more sound if we can get by the long waits and harder appt scheduling.
Dr. Urata is our lead Dr. and he does service both hospitals but seems to be more integrated at Children's. We'll update status after the long Thursday.