Caden's New Look~

Today we had an appointment with our plastic surgeon from Saint John's Hospital in Santa Monica. It completely confirmed that we made the right choice going with her. Dr. S and her nurse spent an incredible amount of time with us. They are so easy to talk to and never make you feel rushed for time. They are open to answering all the questions we have, and help bring some hope into this crazy life we are living right now. It is definitely worth the commute.

Caden weighed in at 10 pounds 2 ounces today and they felt that he looked great considering all that he has been through. They said he may have his surgery as soon as February which would be amazing! I can't wait to see how he looks after the lip surgery. We think he is adorable now so I can only imagine!!! Dr. S. put some new taping on Caden's face to help mold his premaxilla (part of the gum and lip) into place prior to surgery. Poor little guy seemed a bit uncomfortable in his new face gear, but it should really help in yielding a nice result for his repair. We have to keep this on him as much as possible, but it is hard to do when he throws up and is having a hard time breathing. I finally had to take it off tonight for a bit because it seemed like he was struggling to breathe through his nostrils. He looked a lot more comfortable, so I know this is going to be a challenge to have him wear this all the time. He is always in so much discomfort because of the reflux that it is tough to add something else to his plate. Tonight he was really having some terrible reflux spells. My heart just breaks to see him throw up and then gasp for air until I can suction enough out. Then he cries and cries until he is so exhausted that he falls asleep. This happens quite a few times throughout the day and I really would like to get to the bottom of why he has such a difficult time with the reflux.

The frustrating thing is that we can not change any of his reflux medications or his feeding regimes until we see the GI doctor again. The even MORE frustrating thing is that the GI doctor said she wants us to come back in a month and when I tried to schedule that appointment the scheduler said that the doctor is completely booked and Caden could be on a waiting list for February. I said that that was completely unacceptable because my son needs to be seen, and if the doctor said it should be in a month then he should be seen then. The scheduler said that this happens all the time. That doctors will say they need to see their patients in a week and they usually can't get them in for a month or two. WHAT??!!! I was so infuriated that I said I would like to speak to the doctor. I was transferred to the nurses line and left a message which has not been returned yet. This GI doctor is through CHOC, but we are considering looking elsewhere because I cannot be put through this waiting game when Caden's health is at risk. It is not okay to make these babies wait to have follow-ups that are so important. Thank goodness we have great health insurance giving us the option to go where we feel is best. We are learning more and more how insane the medical field can be. You really do have to fight to be your child's advocate.

Through all of this Caden still keeps his spirits up. He is smiling more and more every day. He literally will be having a coughing spell and will smile in between each cough. He is one tough little guy, and he has proven this over and over again.

I wanted to thank everyone for their comments on the blog and the emails, and just following along even if you don't comment. It is nice to feel a connection to others when I have been either home or at doctor's appointments. I am so appreciative of everyone's love and support for Caden and us. We love all of you, too!

Mary