Friday, January 31, 2014

Slow and Steady Through The Race.

I've never been a runner... I mean NEVER... I have tried and tried and I just cant do it.  I maybe last 1-2 miles and then I'm done.  I do however envy the life of a true runner.  They seem to have learned the lesson of slow and steady finishes the race.  They don't jump out ahead full speed, they take their time, enjoy the build up of momentum, and cross the finish line.  This is my new life motto, SLOW and STEADY.  I won't ever be runner, but I will set our "life pace"... slow and steady.

When Gabe and I learned that we were going to be parents, we talked about the endless possibilities of our future.  We didn't find out the sex of baby, and just sat around nightly talking about all the things we were going to to.  Fishing, hunting, football watching, for him, and manis, pedis, and ballet for me.  We talked about what sports our child would play, what "subject" future baby would excel in, and all the fun stuff that goes with becoming a parent and watching your child grow.  We talked about our future travels together and leaving the baby with grandparents.  The possibilities of a "FUN" life were endless.  But we never talked about the enjoyment of actually hitting milestones.  We didn't think that we would ever have to PFIGHT for those milestones.  And here we are today.  PFIGHTING for every step. Praising him for every milestone.

I'm not going to lie, I do constantly "stalk" my mom friends on facebook to monitor what new "thing" their baby is doing, and then I sit and wonder why Brody isn't at that level.  I pray about it, and then it happens.  He takes that next step.  Its like God has to constantly remind me "slow and steady".  I am coming to terms with the fact that we may never be the best.  As vain as that sounds, I'm sorry.  But what parent doesn't want their child to excel.  The most important thing I can tell myself, is that WE WILL GET THERE.  WE ARE ON OUR WAY.  So with that being said.  I was so excited to hear what the Dr. said yesterday.  BRODY IS THRIVING!! HE IS DOING AWESOME!! She couldn't be happier with his progress.  We do physical, occupational and speech therapy 3 times a week.  And they are doing wonders for him.  He is grabbing his feet, grabbing his toys, smiling, "silently" laughing, knows momma and daddy, laying on his tummy, rolling over from front to back, and he even wiggles around in his crib at night and wakes up turned completely sideways.  His progress is AMAZING.  PRAISE THE LORD.  OUR PRAYERS ARE WORKING, YALL!!  Brody is winning this pfight.

Our past month has been awesome.  Our routine is working.  Gabe and I have our "team Pfight" mind set, and its thriving.  Our nurses have been awesome and a blessing in working with our schedule.  I can't thank them enough for coming in at 530am, so that I can work out and work.  I went to work part time Monday through Friday, so I can contribute to the "family fund" and pay bills.  I feel "normal".  It helps me "mentally" to get out of the house and work on myself.  I learned that I can't help others with out helping myself.  We are all THRIVING.

He turns 5 months in Feb.  February is when we discuss his skull surgeries.  I am trying to NOT think about this.  I don't want to live in the future.  We start his surgeries in march.  But for now... we are working on his milestones, and knocking everyone of them out of the park. Go Brody GO!!!

Gabe, Brody and I can not THANK YOU ENOUGH for all of your prayers, love and support.  It has gotten us through the last 5 months, and I know it will get us through the rest of his months.  I ask that you continue to pray for us and for his growing and success in his milestones. For peace with the up coming meetings about his surgeries, and for guidance in our communication with trachea  specialist in Cincinnati ( something I'll save for another blog when I get more info).

So for now... what ever Pfight you are going through, remember that slow and steady will get you through. Don't rush it. Just PFIGHT through it.

http://www.gofundme.com/58c7p4

love
-S


Sunday, January 5, 2014

Keep Calm and Trach On

Happy New Year!! We officially had our first "adventure"or "misadventure", if you will, of the new year.  Like I mentioned in the first post, this blog is about the adventures or lack there of, in brining up Brody.  Its not always going to be fun, but you just gotta push through.

The thing about having a "medically dependent" child, is that you NEED routine.  Its a MUST to be able to handle everything.  Its a routine to order medical supplies every month, its a routine to organize, its a routine to keep everything clean, its a routine to visit doctors, but most importantly is a routine to do daily care.  But none of the routines are a single person job.  It needs to be done as a team.  Whether its with Gabe, my mom, the nurse, the dr, or anyone I can recruit…it has to be done.  The biggest thing is trach care.  Thats a daily routine.  Everyday.  Clean the area around the trach, change the tie, change the dressing…its a job.  A tedious 2 person job. But its our routine.  Every saturday is trach change day.  One more step added to the daily trach care.  Take the trach out and put a clean and sterile one in.  Yes, Gabe and I do this every saturday.  Every saturday we prepare ourselves for this.  We talk each other through each step, and the we do it. We are a team. I pull the old trach out, and he quickly puts the new one in.  Every saturday I have to see the hole in my sons throat that is keeping him alive.  Its a battle I fight mentally, every saturday. For almost 4 months now, we have been doing this every saturday.  The nurses at Dell MADE Gabe and I do this every saturday.  We needed to be prepared. Trained. Ready.  Our parents watched us, they learned the routine also.  We were all ready for this.  WE GOT THIS.

This weekend we decided to go to San Antonio due to Gabes step father being in the hospital.  He needed to help his mother with some stuff.  Brody and I spent the night with my parents on friday so Gabe could get some stuff done and he would come stay with us saturday night when he was done.  It was no different.  We had to stay in our routine.  But this time, my mom took the place of Gabe.  No biggie, shes done trach care with me before and rocked it each time.  We were ready.  Our morning started off great.  Brody ate, pooped, got a bath and was ready for his routine.  I prepared everything.  A new trach, a new trach tie, a new trach dressing, cleaning supplies…and of course, I mentally prepared.    I walked my mom through it.  We rehearsed.  Ok, on the count of 3, mom, you are going to take it out and Im going to put the new one in…Ready…1..2… WAIT…breath stephanie breath… we got this… OK..1…2…3… go…. BOOM… its done.  Just like that.  He is calm as a clam, and his life support is in place.  Now comes the hard part… securing it.  While my mom holds the trach in place, I quickly clean the are, put the dressing on, and then the tie.  Just like Ive done for the past 4 months….But this time our routine took a different route.

Just as I was about to secure the other side of the tie, Brody coughed, and out came the trach.  His gasp for air was heart wrenching. SHIT… what happened...  We quickly laid him back down, took the tie off and slipped the trach back in.  But I was fighting against his gasp for air… it was a battle between the trach, the open wound, and his gasp for air.  The trach and the open wound had a battle.  And as the trach went back in, it must've hit a piece of tissue, and out poured the blood.  Blood was shooting out of his trach.  His air way was open and he was breathing, but he was coughing and crying at the same time…. blood was shooting out all over my mom… my heart was breaking.  I was in panic mode.  I frooze.  My eyes watered with fear.  I couldn't move.  I dint know what to do.  Everything I had been taught was gone.  My mom tried to calm me down, hold the trach steady and keep her self together.  There was only one thing I could do.  I picked up the phone and called 911.  But I hung up.  I dont know why.  2 seconds later the phone rang and it was 911 asking why I hung up.  I told them to send help.  Send it now.  Blood was still coming out.

4 minutes later, the fire dept showed up. My mom and I were standing there. She was holding the trach in place and I was white as a ghost. Still panicing.  Brody was just about calm by now.  Breathing. Staring at me in the eyes.  It was like he was telling me to "suck it up, get your self together, and finsih this job already".  I told the fire dept, that I do this every saturday.  For 4 months I have been doing this.  Then one guy said this to me "Mom, I hate to say this, but you are more trained in this than we are..you need to just do what you do and finish". "He is breathing, his color is good, he isn't crying, JUST keep calm and finish". So, I did what any mother would do.  I finished.  I cleaned him up, got new dressing, new tie, and I finished.  I made sure it was secure and clean, and it was over. DONE. The bleeding was gone, I suctioned the remaining blood out of his trach and it was done. I picked him up and hugged him.  I hugged him like my life depended on it.  The paramedics checked his oxygen levels and his heart rate and he was breathing like a champ.  Everything was perfect.  The paramedics applauded me for "traching" on and finishing.  After all…. I am more rehearsed in this than they are.

Thats it.  Our routine is complete for the day.  There was a minor step added, but we are done.  I can't thank my mom enough for her help. For her voice. Her strength.

Today, I am mentally stronger than I was yesterday.  Im not saying I don't have a few extra gray hairs, but I am stronger.  We as a pfamily are stonger, and our pfight continues.

Routines are not always going to go as planned.  Sometimes there are a few curve balls that are thrown at you.  It can happen at any time.  But you have to be strong.  Keep Calm.  Pfight on.  It will make you stronger.  So for now….we will Keep Calm and Trach On.


http://www.gofundme.com/58c7p4

Love
Steph