Friday, November 15, 2019

SDR Surgery-Recap

We are almost 3 weeks home from St. Louis and Baylor's recovery has been amazing.  He is continuing to amaze us each day with the amount of hard work and determination he shows and his relentless ability to bounce back and make progress.  He is nothing short of a miracle.

I tried my best to write a little each day while in the hospital cause three weeks out it already seems a blur.  These were just quick thoughts each day but I wanted to share and keep.

Travel Day/Pre-Op
We left Baton Rouge bright and early on Wednesday around 4:30.  It was extremely difficult for me to say goodbye to Aubrey and Weston that morning and emotions were running high.  It wasn’t as terrible as I envisioned it and both kiddos were amazing.  I was super proud of them.  My father in law drove us to New Orleans and we made it to the airport around 6:30.  We grabbed some coffee and waited to board our flight to St. Louis.  Baylor was excited to see the planes and loved that our plane was blue.  We had uneventful flight and arrived in St. Louis by 10:00.  My aunt and uncle picked us up and we grabbed a few groceries then checked into the hotel.  My baby was tired so he took a quick power nap before heading to the hospital for pre-op.  The pre-op appointment was first with the physical therapist so we spent about an hour and a half doing various exercises and skills to see exactly what he could do before surgery.  All of it was video taped so I’m sure one day other doctors will see our superstar in action.  After the PT appointment we met with Dr. Parks PA and went over day before surgery details.  Once we got the go ahead we headed back to the hotel for a quick, early dinner with MeMe and Papa D. After dinner we bathed Baylor very well and put him down for bed.  We knew the morning would arrive quickly and I wanted to savor all the snuggles.  Overall it was an emotional day but also a fun one.  We had lots of anticipation but enjoyed sharing the new experiences with Baylor.

Surgery Day
Surgery day had us up around 4:30.  We dressed and headed to the hospital for 5:30.  This was a very emotional morning for me and some of the morning is kinda foggy for me already.  We were brought to the 6th floor and were placed in a small holding room where we met with numerous doctors and anesthesiologist.  We gave Baylor a sponge bath to clean him before surgery and then he was given some Vercet to help relax him.  It was so funny because he spit most of it out because it was nasty but he got enough in his system that he was absolutely loopy and he was hilarious.  It was a very emotional moment because I knew we were about to hand him over but the moment was lightened with him being so funny.  You just couldn’t help but laugh at his antics.  They came in and said it was go time.  Tears, tears and more tears.  Christian walked him back and I just lost it.  I cried in my mama’s arms and let it all out.  We were brought down to the Ronald McDonald Room and we waited there for about 3 and a half hours.  I cried the night before wondering how on earth I would survive 3-4 hours of sitting and waiting. I knew it would be torture.  My sweet brother had organized a series of videos that were sent to us at that exact moment surgery started.  Each video was from important people in our lives, people that had invested in our lives and people like our pastor, co-workers, friends and family.  It was so special…we literally watched the videos of people praying for us the entire surgery…it felt like about 15 minutes.  The presence of the Lord was in that room…there was a peace and a calmness.  We were called each hour during surgery for progress reports and finally the last call came from Dr. Park himself.  He said surgery went well and Baylor was in recovery.  We waited a little longer and then were brought up to the recovery room.  We were warned that Baylor would have lots of tubes and wires, maybe a little swollen and just rough in general.  He did look pitiful but it was so amazing to see him…it was like I finally was able to take a deep breath and let some of the stress fade away.  We spent about an hour in recovery with him and then were brought to the 12th floor- Neuro- and settled into our private room with an amazing view!  Baylor was very fussy and disoriented so we spent the rest of the day comforting him and calming him down. He hated being moved or turned in anyway so that was the biggest source of discomfort for him.  We did lots of snuggling that night and praising God that all went well. 

Friday Post Op Day 1
Friday was a full day of resting.  Baylor watched Secret Life of Pets about 10 times.  We kept it low key this day and really tried to get Baylor to chill out.  He started having some spasms in his legs so we gave him Valium and instead of it relaxing him, he became a total chatterbox.  Talking non stop!  It was hilarious. Note to self to never give Valium to him at night.

Saturday, Post op day 2
This was probably one of my favorite days, Baylor was in good spirits and didn’t seem so uncomfortable when being rolled from side to side.  We also watched the LSU game in the hospital room and ate Jimmy John’s…doesn’t get much better than that!  My cousin Trey came to visit and it was so nice to see him!

Sunday, Post Op Day 3
Post op day 3 is the most feared day of recovery for SDR. We have been dreading this day.  It was very hard for Baylor to move from side to side, much less to get out of the bed.  Baylor was given some oxycodone before his epidural and catheter were removed and to help with the pain.  He was a little high…lol…enjoying his medicine but he was able to get out of bed with minimal pain and he enjoyed a stroll to the 8th floor library.  We went back to the room and let him eat. We let Baylor rest some and then he had afternoon therapy.  This was by far the hardest hour of the recovery.  Baylor’s pain medicine from the morning had worn off and he was very aware of the transitions and movement.  He screamed the entire way to therapy and during most of the therapy. You could see the pain in his little face as he tried to move and it absolutely broke my heart.  I had to step out just once and take a break cause I just couldn’t handle seeing him struggle so much.  He did do better towards the end and we headed back to the room to let him rest.  Baylor crashed almost instantly and slept about 3 hours.  My sweet uncle surprised us and drove in through St. Louis to see Baylor. He and Baylor have a special bond as they both love music and the Rolling Stones.  It meant the world to us that he came and Baylor tried to stay awake and visit as much as he could!  After Baylor woke up we had to do a suppository to get him regular again and while we waited for that to kick in we took a trip in the stroller to see the train in the lobby.  St. Louis Children’s Hospital has some impressive things for kids to watch and do….it’s all very interactive and impressive.  After the quick stroll we came back and had a successful bowel movement!  Holla!  Overall it wasn’t a horrible day…it was tough but Baylor’s so determined to bring joy to every situation.  He doesn’t let one tough moment stop him from bouncing back with joy. 

Monday Post Op Day 4
Baylor had a much better morning and he seems to be in so much less pain.  We are able to move him easier and we’ve taken a stroll in the stroller around the floor with no tears.  Baylor had therapy this morning and he did amazing.  He is so super weak but he doesn’t give up…he just keeps fighting.  It breaks my heart to see him struggle to do basic things like sitting up and crawling but I know it hurts me much more than him…he just pushes through!  We had my cousins Ryan, Tarah, Riley, Isaiah and Harlow come visit.  It is such a blessing to have amazing family here in St. Louis and we have been showered with love from family.  I think as you get older, the more you cherish and value family…especially the ones you don’t get to see every day.  Baylor had another therapy at 3:00 and he was still uncomfortable but there were no tears!  He even took a few steps with assistance!  We were so thrilled to see him up and moving without pain!  He has a long way to go but I know he will make huge strides each day!

Post Op Day 5 Tuesday
Tuesday is DISCHARGE day!!!  Whoop Whoop!  We met with the physical therapist and went over the protocol for going home, therapy and wound care.  We were told to come back to St. Louis in 4 months for a follow up with Dr. Parks.  Mom and I spent some time in the gift shop and found some goodies for the kiddos.  After that my aunt and uncle picked us up and we went back to our hotel room. Baylor was thrilled to say goodbye to the hospital and get back to the hotel.  We took a little nap and rested then went to Apple Bees with Meme and Papa D.  We headed back to the room to pack and called it an early night so we could be up early for our plane ride back HOME! 

My sweet Uncle and Aunt brought us to the airport bright and early and we caught our plane to Atlanta.  It was by far the worst plane ride I have ever been on. We had no view from our window and we were in the very last row and the guy in front of me leaned his chair back really far so I felt a little cramped! I guess we hit a ton of turbulence or bad weather but it was like riding a bad roller coaster with no way to get off!   Poor Baylor…he isn’t supposed to be jostled or shaken so I felt really bad for him, but he handled it like a champ.  I on the other hand struggled to make it and almost had a panic attack but FINALLY we landed and literally ran to our connecting flight.  The flight to Baton Rouge was much easier and so much smoother.  We landed in Baton Rouge and were greeted by sweet Nana, (who took amazing care of my Aubrey and Weston)!  It was the best feeling ever to set foot back in Louisiana.  We got home to the sweetest welcome sign in our yard from my sweet friend Shauna and it was just the perfect way to come home.  Then inside we realized my sister, Cherith, arranged for our house to be cleaned and let me tell you that was a HUGE blessing.  My house smelled and looked better than it ever has before.  We were just so overwhelmed by the love poured on us. 

We did it!  We made it through and Baylor is doing great!  We have a lot of hard work ahead of us but we know this was for the best.  May God use this journey for Baylor to testify of His faithfulness! 

Tuesday, September 24, 2019

One Month

Well here we are.  Exactly one month out from the day I have been dreading for almost a year now.  Surgery day.  The day that will ultimately change Baylor's life...hopefully only for the better. 

Everyday I feel like I am constantly "on watch" with Baylor.  I watch how he walks that particular day, I watch and monitor how tired he gets, I watch to see if he falls more or less than the previous day, I watch his to see if there is stiffness in his arm, I watch to see if he can take the steps of a curve or not,  I watch how he eats and the list goes on.  I am constantly worrying about my little guy...more than any of my other children.  It is an exhausting job and one that is probably not even necessary but I can't help it.  Baylor has a disability and even though it is considered mild, it affects every single aspect of his life and mine as well. 

I once read an article that said even though we can be thrilled our child's disability is mild, the mildness comes with a whole new set of struggles and worries.  Since the disability is somewhat masked by a normal output, people fail to realize the struggles, people fail to see the daily hardships that go along with being somewhat typical.  For instance, if someone is in a wheelchair, it is obvious that their legs/muscles have a problem.  The disability is right there in the open.  But for someone like Baylor, he looks normal to the average eye and most people probably wouldn't even be able to tell he has Cerebral Palsy.  What they don't see is the endless hours of PT that it takes to keep his legs functioning, they don't see the debilitating fatigue he faces after just an hour or two of normal activity, or the extra effort it takes just to do normal things like eating and chewing.  It's difficult as his parents because we see him want to be like his siblings and at this early age he doesn't really know his limitations, but the older he gets the more the disability will separate him from his peers. The older he gets the harder it will be for his bones and muscles to keep up.  He will continue to decline and face constant struggles within his own body.  As scared as I am for this surgery, I am more scared of watching him parent wants to stand by and watch their child deteriorate...and for that reason alone we will move forward with this surgery.

It will not be an easy will be an intense shock to Baylor's little body. It will require at least 6 months to a year of extremely hard work with daily therapy and still after that a lifetime of weekly therapy to maintain his gains.  He will face weakness and fatigue unlike anything he has known before.  However, it is our hope that he can build real muscle and strength that will keep him mobile for the rest of his life.  Something that would be in question if we just left things the way they are now.   Opening his spinal cord and severing nerves is extreme.  We are well aware that this seems like a lot for someone who is so functional, but the future for Baylor is what is at stake.  We can't stand by and let him have to continue to fight against his own spasticity and tightness.  We can't let this disease continue to wreak havoc on his muscles and joints.

In my mind I know we have to do this surgery, but in my heart I am terrified.  Completely and utterly petrified to hand over my angel boy and let them perform a risky surgery.  Maybe it has been done on 4000 children with CP, but this is my little guy, my barely 24 pound little baby! I am having to hand him over and allow them to work on his spinal cord for 3 hours. I picture him laying face down, exposed and vulnerable and I just can't handle it.  My heart can't go there.  It's just too much.    The thought totally sends me into a spiral.  I have had more panic attacks and breakdowns this past year than ever before. I have to stop and refocus my attention to the great things that Baylor will accomplish through this and find the good in the journey. I have to instead change my mindset and proclaim that this will only make us all stronger. I share those vulnerable moments not for sympathy, but to show that this life is not perfect and although our family puts on a brave face and we may look like we have it all together but honestly we don't....we struggle....we fight...we cry...we breakdown and we have our un-Christian like meltdowns...but we do get back up and keep going. If nothing else Baylor has taught us that we have to keep going. We have to keep putting one foot in front of the other.   We put our trust in the Lord and know that matter what He loves Baylor and He will do what is best for him.  Relinquishing control has never come easy for me and this is probably my hardest test to date.

So that is where we month from today we will embark on the SDR journey and pray that we see wonderful results.  Throughout all my doubts, fears and uncertainties, the one thing that I have NEVER once questioned was Baylor's ability to get through this surgery.  I know without a doubt if anyone can overcome the obstacles... it will be him.  He is by far the strongest little person I have ever met and I know he will work harder than anyone to see results.  He will fight day in and day out with a huge smile on his face.  He will charm every nurse, doctor and therapist with his positive outlook and sweet demeanor. He will make us laugh at every tough stage. He is Baylor BRAVE and I am so thankful I get to witness first hand what a true hero looks like. 

"And the LordHe is the One who goes before you. He will be with you, He will not leave you nor forsake you; do not fear nor be dismayed.”

Tuesday, September 10, 2019

Summer and Diet Coke

I am such a slacker when it comes to blogging.  I really think about blogging often, but I never really make the time to sit and write out what I am thinking.  I plan to do better. 

Summer was fabulous and exhausting at the same time.  We filled our days with fun and sun but I can honestly say we were ready for school to start!

We are officially back to school and I am loving it.  I absolutely adore being with my children all summer long, but they really do thrive and do better with a schedule and consistent routine.  I am able to get so much accomplished and done while they are at is very liberating!  My Aubrey Lane started 2nd grade this year and my sweet Weston started K5.  Baylor Boo started a part time pre-school at our local public school and he is thriving!  All three are loving their teachers, friends and school!  I am so pleased that they are settling in and starting to get the hang of the school routine. 

Morning have gone surprisingly smooth.  The life saver for me has been getting up before the kids.  While this is very hard for me, it saves me from having a chaotic morning.  I usually set my alarm for around 6:30 and get some coffee and do my devotional.  Aubrey and Weston are up by 6:45 and both are very needy morning people.  Lots of snuggles and encouragement are needed for both of them.  Weston in particular. We are usually ready to go by 7:40 and dropped off by 8.  I am trying to incorporate some sort of physical activity for myself in the mornings after drop off and I am enjoying that as well.  Usually Baylor and I take a walk or I will run if Christian is home. 

Another huge thing that happened over the summer was I officially got off all Diet Cokes.  This is nothing short of a miracle.  I have drunken a LARGE Diet Coke every single day at lunch for years.  YEARS I tell you.  Our pastor preached a message on strongholds and something really struck a nerve with me and my soda addiction.  I knew it wasn't a sin or anything, I just realized that it wasn't good for my body or mind and I wasn't sure I could let go of it.  It was a real addiction for me.  I had tried weaning down in the past, but it never worked so I knew I had to go cold turkey.  I went for it back in May and haven't looked back since I said goodbye!  I feel a thousand times better and while it was tough at first, I honestly don't really ever crave them now.  I had one a few weeks after quitting and it just wasn't that tasty anymore.  I am so shocked and proud of myself for knocking the habit.  It was a huge step for me. 

Summer for us was a blast, jam packed with tons of swimming, movies, parks, beach time, vacations, library visits and much more.  I cherish every summer with my little guys cause I know soon they won't want to spend their summers with me!  So long was great!