Sunday, August 7, 2011

I am okay and Brayden

Yes, I am doing fine.  Last week was not my best week.  A summer that was supposed have only one doctor appointment for Brayden has turned into much more.  I feel overwhelmed at times but cannot even take the time to be overwhelmed because I have to be on my game at all times.

Brayden is going in for Botox in both legs, on Tuesday Wednesday.  He will be sedated.  Since he now has listed on his file, respiratory failure after a procedure (happened back in the spring), they take procedures WAY more seriously.  Although it was my understanding he went into respiratory distress because of having two procedures, being intubated for both, in a matter of a couple of days.  He has been sedated more times than I can actually count and only one time had problems.  Anyway, Brayden had to have a pre-op meeting.  Not over the phone like we have had before, this required a full trip downtown to Children's...a  2+ hour drive in traffic in which Brayden SCREAMED the entire way.  Then at the appointment he went into a big seizure that he could not shake, so we gave him Diastat (emergency seizure med) and we waited.  It lasted about 30 minutes.  We were about to take the elevator straight to the ER and then he came out...we left the hospital knowing that if he went back into the seizure we would pass two other hospitals on the way home.  I had to rush back to get Carter and Luke from camp.

Brayden was also fitted last week for a DMO suit.  This is a full body suit, like a short sleeve and shorts wet suit.  The idea is to provide much more stability to his core and help align his spine.  I cannot even begin to explain it because I have yet to see one (you can check out this link, if you are interested).  It required a lot of little tiny measurements.  It will have snaps at the legs for diaper changing and flaps on his stomach for his two feeding tubes.  The goal is for him to wear this suit all day, only off at bedtime.  It sounds like a big pain but if it helps Brayden, we will certainly use it.

Then the vomiting....honestly I am just going to get him past the Botox procedure and then really talk to the GI doctor.

On top of things, my birthday was last week, which was just another day.  Carter and Luke started their football season (practice every night), my car had big troubles and I spent quality time with the AAA guy because I could not even make it to the car shop...I felt like I was loosing myself in the chaos.  And if I had one more person tell me they were tired, I was going to loose my cool.

Being a mom is a full-time job, any mom knows is not something that ever stops.  On top of that, being a mom to a special needs guy...well, it is all consuming.  I operate at a level of stress that is just always there, sometimes it feels like it is just too heavy or times it is just "normal".


Unknown said...

Vomiting has been an issue for my son over the years. I know every child and family is different... and I really know you don't want unsolicited advice from a stranger so I apologize for any offense.... but I share simply because this is recent news to me, our neurologist recently subscribed Zofran for when those episodes start - because they don't stop - tried it twice and it helped so far. I wish you well getting through the Botox procedure. Please forgive any thing that sounded obnoxious here, I see you as amazing even as exhausted as you are.

Debbie said...

Reading this and "I am tired" I can totally sympathize with times our lives seem so parallel.

So sorry summer has turned this way....we both know seasons, holidays, birthdays, etc don't can feel daunting and exhausting and just plain sad when it feels everyone in the world is enjoying summer fun but you and your kids! Sometimes just venting here helps...I hope it does for you. Praying for the upcoming procedure and that you get a break. Xoxo deb & h

Anonymous said...

There are no words for the compassion I have for you. My best-friend sent me your blog to read. She and I often share our 'rough' spots in our journeys as Moms. But as I sat here and read your notes, I'm deeply humbled. Even though you openly share your deepest sadness and struggles, your love, sacrifice and energy is showing. You remind me of Ruth! God is SO proud of you and you ARE making an amazing impact on those that you love - even on the days you don't feel it. I am going to start praying for Brayden and your family with my little boy at night. These are only words, but they are meant to be much more. God bless you. Shauna

Wherever HE Leads We'll Go said...

Thank you for being so open and honest. The month of July was pretty crazy for us. Therapy and appointments and news we did not want to hear. I felt like I would completely lose it if one more thing came my way (and then one more thing came my way!).

All that to say, you are not alone in feeling this way. It can be overwhelming at times. I just keep reminding myself that God is in control. He is not surprised by the things that happen in our lives. He has the strength, wisdom, energy to tackle it all. He doesn't expect us to handle things on our own. He wants us to rely on Him. Sometimes our circumstances give us no other choice! Praying for you and your family.