Saturday, December 11, 2010

Phew what a week!!!

This week I have certainly been blessed by my faith. With the birth of a precious miracle, and with amazing friends (thanks Meg!), with all kinds of distressing info about Sam, I am just so thankful that God loves me and is carrying me through all of this stress. I can't imagine this life without God.
I was blessed to witnessed the birth of my beautiful new nephew, and reminded of God's miracle of life. My nephew is GORGEOUS by the way:-)

Sam and I went into Mass General for an appointment in the Coordinated Care Clinic (CCC) . This visit essentially was to review all of the recent events regarding Sam and his healthy. It was a good and bad visit. Health wise as far as multiple issues he is doing very well, except for the respiratory stuff. The CCC provides all types of support for families/children with complicated health issues. They help with insurance, coordinating appointments, making sure all the specialists are on the same page, and answering questions. They also deal with school stuff and making sure the school district provides appropriately for the child. That being said we met with a social worker this time (who we have never met before). She doesn't know Sam or I, and within a couple of minutes of her being in the room, she was suggesting that he have a Neuro-Psych eval to determine if he has any special needs, such as being on the autism spectrum, ADD/ADHD, etc etc. I was kind of put off by this. Feeling like she didn't really know Sam, and I was nervous that he would be labeled with something behaviorally just because he is an active 4 yr old boy. So I have been hesitant. I have spoken with some friends, and the pediatrician in the CCC. Essentially everyone is saying that it is really up to us. They don't see any red flags but it might be goood to have it in place because I guess our school district is difficult to get services if they are needed. My concern is wanting him to not be penalized for missing too much school, and possibly tutoring if needed. Anyone have any thoughts about this evaluation?

Wednesday was pretty normal. I received a call from the pulmonologist on tuesday but being in boston missed the call. When I returned the call the office was closed and he was off today! When I called his office the receptionist said "OH if he called you it must be really important!" Of course that gets the wheels turning in my head, and I start to get fearful about the results. But hopefully tomorrow we will hear the results.

We went into to see Sam's GI doctor today. He is happy with how he has been doing. Although he wishes that I would have been able to tell him that Sam hadn't had any bloody stools since the last time we saw him. Had a great conversation about God and Christmas with him. It seems as though society is trying to make us fearful about wishing others a merry Christmas, but I WILL NOT BE AFRAID! I will wish people a merry Christmas and be proud of my faith:-) I did end up talking to the pulmonolgist on the phone. He stated that Sam had moderate to severe sleep apnea, that he has elevated CO2 levels, and that he has decreased oxygen levels. HE said that this was so concerning. He recommends strongly that we have his tonsils/adenoids removed.

Today we had the much anticipated ENT appointment. Thankfully I was able to bring his sleep study report with us. And although the pulmonologist stated that he had moderate sleep apnea, the ENT is saying that it is severe, and that the study probably doesn't show how bad it really is. In the hours that he was having the sleep study, there were 69 attempts of breathing that were unsuccessful due to obstruction! He said that there were on average 7-10 obstructive events an hour! So he wants to quickly move forward with having the tonsils/adenoids removed. He explained how his oxygen levels were low and his CO2 levels were high and how this can effect his heart and brain, and decrease his drive to breath! Scary stuff! He also noticed fluid in Sam's ears (there is ALWAYS fluid) and wants to place tubes as well if there is fluid when they do the surgery. Due to Sam's bleeding disorder and the risk of bleeding being so great, he will be admitted to the ICU for at least one night after the surgery, and then they will determine how long we stay depending on how he does. We should hear by monday. I am praying that it is like the day after Christmas or something, so that we can get this resolved before he gets another respiratory illness.
We also got to go to our church to decorate cookies and watch a Muppet Christmas Carol. The kids had a blast decorating cookies, but Sophia especially was not impressed with the movie. She liked it for about five minutes and then wanted to play. Oh well it was so fun:-)

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